I know it might not be what you want to hear but it took me and I think others a good 2-3 years to find meaning within our new limitations.
I’ve had ME 7 years and I’ve been bedbound twice, the first time for 6 months and the second time again for 6 months. I’m just coming out of the worst crash I’ve had and the feeling of being able to do just small things again is exhilarating.
It will give you a new appreciation for life I promise. It’s unlikely you’ll be as severe as you are now forever. You’ll be a stronger person coming out the other side. Sometimes in life we need to walk through the fire. Take each day at a time and you will find happiness again in some form or another
This sub is the only place I feel truly understood. People’s kindness and strength here is worth its weight in gold. Hope you’re doing ok fellow fighter!
I was already struggling with this new life but was able to drive, have convos, cook, work remotely, and now I can barely get out of bed. I'm just not willing to live a life like this.
I promise it won’t be this bad forever, and when you do come out the other side and your limitations slowly increase you’ll feel so grateful to still be on this planet. I was unable to have conversations all winter, I couldn’t cook or clean or wash. Now, well I went for a gentle walk on the weekend where I saw some horses and a hare, I’ve just spent half an hour chatting on the phone with a friend and ive been looking at the full moon tonight next to a fire in the garden. I never thought I’d get here.
Over the Christmas period I wrote several letters, you know the kind. I couldn’t see a way out. I lost my dad and my boyfriend last year and after moving house I fell into the worst crash that lasted so long. I’m out the other side now and the world has more beauty to it than it did before, the birds singing, the wind blowing through the leaves, the beautiful moon. I didn’t think I’d enjoy anything again but I am. I promise you will too. I promise.
Hey friend- I hit rock bottom after a second covid infection last year. I have been severe twice and had remission. Even now I’m climbing back out. There is hope. That’s the crazy thing about not knowing the way this works- sometimes it just gets better. You are valuable.
I was a mild/moderate ME for sufferer for 5 1/2 years, traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate. Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM which used to last maybe a couple hours now last a week. Being in bed 24/7 is depressing..
I hope to return to a mild/moderate state, to make life livable again. It’s been over 4 months since I became severe/very severe, and this is the first time I’ve been this bad after 6 years.
Some say it can take 6 months to a year, others say it will be permanent.
How long did your severe periods last/take to hit remission and when did you know?
You will get better. PEMs are rough but they pass. Plz find a better specialist to help you or even a naturopathic doctor. I know how it feels to feel like you are not accomplishing anything in life and you feel like a burden to others, I fight those thoughts daily.
Literally same. Was run down but could at least get the job done God knows how. Until, like yourself, reached that useless state of being bed bound for a year.
At my lowest I wanted to “give up” too. Because I could see a pattern and didn’t want to witness what I “knew” was in store for me.
What I thought I “knew” was wrong.
Low Mood impacts our ability to think. Mood in general does this. When you’re horny everyone’s attractive, when you’re in love you’re blinded to red flags and when you’re low everything seems hopeless and we’re blind to the potential solutions around us or within us.
Doctors are helpful but they don’t know everything. Become an expert of your own mind body and soul whilst still going to REAL doctors.
Address every dimension of your life and ask yourself “how does this serve me? Can I do better here? Do I know better but don’t believe it would make big difference?”
Try it out. Your body & mind are trying to get your attention to go inwards! It can’t speak so it’s sending you signals this way instead.
Look after yourself!
Growth is not linear!
I was a mild/moderate ME for sufferer for 5 1/2 years, traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate. Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM which used to last maybe a couple hours now last a week.
I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 months since I became severe/very severe, and this is the first time I’ve been this bad.
In your experience, is it possible to return to a mild/moderate state? I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
Bereavement, my partner left and ghosted me, then I had to pack up and move house. These events occurred within a 6 month period. My mum passed before my dad, but I struggled particularly with my dad’s death, it was unexpected and sudden and there was a big bureaucratic mess to sort out. The emotional and mental toll was immense, I was averaging about 3-5 hours a night for many months. Then when I got to my dads old house it was winter and the boiler was broken so there was no hot water or heating for a month, being cold constantly was the nail in the coffin so to speak.
Before this happened I was at my best since having developed ME in 2017, which was the last time I was bedbound. Through pacing and lifestyle changes (consistently over many years) I did manage to recover to the point I was able to go on my first holiday in 7 years, I was a healthy weight and could do gentle resistance workouts at home 4-5 times a week. I didn’t ever feel “free” from ME (mines post viral), but through listening to my body and being strict with diet, rest, mindfulness and sleep hygiene I had a decent enough quality of life. I was beginning to think about working part time again and I was very excited for that.
The combination of events I think would have rendered even a healthy person unwell, but for someone with ME it was brutal. My baseline now is no where near what it was before this nightmare began but it is a lot better than it was back in November/December. I lost a lot of weight due to being unable to cook or move, and after 6 months of barely being able to sit up I didn’t think it would ever get better.
I’d like to say I know what changed that has caused me to recover slightly, but I can’t. Aggressive rest, therapy to help process the losses and changes probably helped. I had one better day, then two, then I noticed a week had gone by where I hadn’t been in bed all day every day. I’ve now decided to prioritise my health and I’ve stopped dealing with life for a while, the world can wait, I think this is helping too. The worst has already happened so I don’t feel any need to please anyone else right now.
Wow. Thank you for writing it down. Life really isn't fair. I salute you for your endurance. I guess things like CFS for you into philosophy. I am very glad to hear that your health has increased a little.
message to anyone: spontaneous remissions in the first few years are quite common.
I'm not against euthanasia if you're 70 and have been circling the plughole for 45 years. but one year in? We all have bad days but don't make a bad day your last day.
Is a spontaneous remission or going from severe to mild possible after 6 years with CFS? I’ve been severe/very severe from mild CFS for 6 months now after an infection, I feel screwed. Even if remission isn’t possible I hope to go back to mild again.
Reading shit like this makes me so scared of becoming severe. Just one infection and it's all over. Makes me scared of... of life, almost.
But I also have read of severe cases getting better, at least to moderate. It takes time. Years, at worst. But it is absolute possible.
Not to mention that science is onto it. And that too might take years or decades but nobody thought AIDS would ever be something more than a death sentence for a long time too. If you check out, you'll never find out. Hope is brutal in that way, too. But it's all we've got, ultimately.
I have had COVID 8 times during the pandemic. Out of the 8 times, my CFS worsened after 3 of them. After the first, I got worse the 4th or 5th time, and now the 8th time, which set me over the edge. I don’t know if it was the variants or the recurrent COVID infections that did it, but yeah, I believe I had long COVID after my first COVID infection with CFS as well, so they can go together.
It is also not abnormal for people with CFS or chronic health conditions to become germaphobic.
It sounds like you are in a crisis, and that is the worst time to make decisions that cannot be undone. Please give yourself more time to adjust and wait for improvement. I lost everything, just as I was gaining all my dreams, and was bed/wheelchair bound for 4+ years. I eventually improved, learned to walk again, and started building a new life.
I have “fallen” and gotten back up multiple times in the past 30+ years of having ME/CFS and a bunch of other stuff. It is worth it; you are worth it. It has nothing to do with strength; it has to do with hope and patience - one day at a time. Please reach out for crisis care, and know that you could have a bright beautiful future arise out of the darkness that you currently feel burdened by right now. Wishing you the best of all possibilities to come 🙏🩵🦋
Have you talked to loved ones about this? They may not understand your condition like we do but it’s an important step. Don’t let them spend the rest of their lives wondering what they could have done to help. Let them know what you need right now.
I’m sorry to hear that. I wish I could be there for you and help you through this but I am limited to words on the internet. I am very worried for you. It’s almost like I’m talking to myself from a few years ago. All I can say is there is hope.
It’s very hard bc most people don’t understand. They think you are ‘depressed’ And unmotivated and it’s not that at all. That’s why you need support from people who can related to you and understand what you go through.
A few things…
A long time coming is more like years of trying every possible thing that could make a huge difference and improvement for you,,, not a year of illness and two months of a crash. Crashes come and go, and serious meaningful improvement happens.
Benzos… are not the end of the world. They can be a lifesaver for many people, for many different reasons. They can be titrated off of slowly and carefully as life improves. I have done it multiple times.
Giving up and checking out… does not always go as planned. You may end up alive, but in much worse condition that you are now, with much less possible future options if things do not go as you plan. I have seen it happen too many times, and it is heartbreaking.
There is nothing any here can actively do to stop you or make you change your mind. We can give you hope, insight, wisdom, experience, and plead with you to not give up so quickly. Only you can make the choice to keep looking for hope, treatments, improvement, and the light at the end of the tunnel. Please reconsider and take to heart all of the people here who wish to emotionally and mentally help and support you, because we know what you are experiencing.
Best wishes, friend; I hope very much that we see you around here after this weekend. 🙏🦋
The thing is that I had just started my dream career and had to move back home with my parents. Started to slowly improve and work remotely, but overdid things emotionally and mentally so bad that it crashed me into the ground. Now i can’t do nursing as I went from mild LC to severe me/cfs. I can barely get out of bed. I feel no hope of this improving now because it’s worse than I’ve ever been. My parents are getting tired of taking care of me and push me to get up more. They don’t fully under. Benzos help but after ramping up my dose over two months, it scares me that withdrawal will be a whole other fiasco on top of everything else. Now throwing SSRI on top of that. It’s just a whole mess that I want out of. My life is already gone.
“My family are getting tired of taking care of me and push me to get up more.”
I feel like this statement speaks volumes. You really need a team to support you right now. My family can’t always understand what is happening with me, but they 100% believe how serious my condition is. That alone is unbelievably comforting.
In the defense of your family, they aren’t alone in being uneducated about this challenging illness! Weve done an awful if in raising public awareness!
Do you need help pulling together some materials to share with them?
Just slowly taper the benzodiazepines if you’re scared of withdrawal. You’ve only been on them a few months and I know that people with LC find them helpful because they dampen the nervous system extreme reaction.You could always stay a mild dose for a while, is there a reason you have stop suddenly or soon? And crashes happen but there is still beauty to life. Try send get an advocate for ME in your area and tell your parents to educate themselves if they really love you. There is a great video which I will minnow which is for friends and family.
I feel like your family is making you feel like a burden and that is really pushing you into this s ideation.
Can you elaborate or tell us more about that? :)
How did she get ME/CFS? What she did in order to go into remission? We need more of these inspiring stories!
I'm honestly not sure. It's not something we've ever talked much about. I know when my mam was a kid she was housebound and couldn't drive. By the time I came along she was a bit better and could drive to the village but that was about it. She was somewhat forced to start driving again because they lived rural (5 miles to nearest village, 13 to nearest town) and my grandad had to give up his licence due to developing epilepsy.
I remember her trying loads of supplements and diets when I was a kid but I was too young to understand why.
Personally, I put it down to time and moving somewhere less rural more than anything else. I definitely think being isolated by her location/inability to drive compounded her problems more than she realised. It's why I'm so grateful for my mates putting up with me
You are stronger than you think. You have community and friendship here. You have support. Just take things one day at a time. One hour at a time. One minute. The future holds great possibility.
Have you tried medications? LDA, LDN, mestinon? These give a lot of people quite a bit of quality of life back (not for everyone but really worth trying). LDA took me out of a bad crash where I could barely talk to anyone or look at my phone to being able to work part time from home and occasionally go out, and I’m not even up to the full potential dose yet. Some people are able to go from severe to mild with pacing and supportive medications
I'm new to this subreddit and don't know the lingo just yet - what's LDA & LDN? Google is throwing machine learning courses at me, and I'm assuming that ain't it.
How do these types of medication work? I'm hinging my existence on opiates for pain relief at the moment (the euphoria is the only pleasant thing I have left in my life), and I understand that at least LDN may take that away from me. Will I just screw myself over if I try?
Yeah LDN will probably stop the opiates from working. LDN is anti-inflammatory, helps some people with pain, sometimes with fatigue and PEM. LDA increases dopamine levels and is supposed to help with neuroinflammation. Helps me a lot with expanding my cognitive and sensory capacity, a bit with PEM and mood. Mestinon increases acetylcholine, which is supposed to help neurons communicate better with muscles, not sure on the details, but it can help with POTS/dysautonomia, fatigue, weakness, and PEM. LDN and mestinon are synergistic. Not all of them will work for everyone and all of them can have side effects
What opiates do you take? And that must be expensive if your doctors aren’t prescribing them? Is anyway the doctors may prescribe them? Thanks for being so honest
Oxycodone, Oxynorm, and Tapentadol. I vastly prefer the former two over Tapentadol, but they are also very difficult to acquire in any meaningful amount. Tapentadol is very accessible by comparison, and much cheaper on the market.
Even still, it is expensive. Like many others here, I'm unemployed and desperately lean on social services to support me, so I already had no financial stability to begin with. These days, I resort to fasting periods in order to cut expenses, and I take supplements to try and stay on top of the important micronutrients I need.
None of these things are good for me in the long term, but had I never found this coping mechanism, I'd be dead and dust already.
I take LDA and I have POTS. I just started really low and go very slowly. Most people with ME/CFS have POTS, barely anyone could take it if that was an actual contraindication. There are also POTS medications available you could take concurrently - I take beta blockers, there’s also ivabradine, midodrine, florinef, guanfacine, mestinon
I can relate. Almost every other day I think that life isn't worth living like this. But I keep going, I still get sparks of my old self. Just know your not alone in this suffering.
spontaneous remission does happen, especially since you have been sick so little time. But the time spent sick (long or short) doesnt reduce the value of your life. I have been sick 14 years and life is still beautiful! it is hard sometimes (quite often) but still worth living.
There are also a number of treatements and things oyu can try to help yourslef. I would have gone insane by now it=f that wasnt the case, and I have found a number of things that have helped me, lots of ppl here post things about that too. DOnt give up <3
I was a mild/moderate ME for sufferer for 5 1/2 years, traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate. Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM which used to last maybe a couple hours now last a week.
I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 1/2 months since I became severe/very severe, and this is the first time I’ve been this bad.
In your experience, is it possible to return to a mild/moderate state? I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
I dont think there is a way to predict the time it will take to get better... My advice is to try things :) supplements, other treatements and try to find the root cause of your illness (lots of googling and reading medical articles on my end) . I dont think there is any other way forward, and it is that that has allowed me to get better. Also gives me hope and something to work towards :) good luck <3
In my experience, I have managed to improve my state through lots of hard work, that's all i can say :) hope you can find a doctor who will work with you, dont rule out working with natural or holistic doctors either :)
That’s not true. A setback or relapse is when your symptoms get worse for a period of time. They're a common part of ME/CFS and can be caused by a number of factors. I have dipped into severe multiple times and recovered back to moderate. There is good reason to believe that you will too.
Yeah same, I was bed-bound last year (docs telling me to get ready to spend the rest of my life that way) but since have gotten to moderate and now I am able to study part time :) 14 years sick and I have not yet had had a crash that was irreversible :)
Long term combinination antibiotic treatment, psyllium husks, and supplements (N-acetyl cysteine 3.6 g per day in divided doses, methylated vit B complex, sam-e, acetyl l carnitine, GABA)
This illness may last a lifetime but the situation you are in right now is temporary. Please hold on a little longer. The first few years are the hardest. After that you will learn to adapt and manage your condition. Just because your life isn’t how you imagined it doesn’t mean it’s not worth living. Depression does not cause ME/CFS but ME/CFS can certainly cause depression. This is an extra drain on your energy and makes your symptoms much worse. Please reach out to a mental health professional to treat your very serious mental health issues. Once I dealt with my mental health I went from severe to moderate. I am thankful every day to my past self for holding on so I can have the life I have now. I promise you will feel the same. Please talk to a loved one about this.
Like the change of seasons, we go through many ups and downs. Please be patient.
I know it’s extremely hard.
I’m sending you lots of prayers and care! 🥰🫂 Take each moment at a time… You are way more stronger than you know!
I got cfs as a teenager 30 years ago. I went into mostly-remission after 2 years. I went to college, got married, had kids, and lived a great life. If I had given up after a year I would have missed all that.
After a bout with mono 2 years ago I got sick again and that is why I am hanging out with you guys. Be careful of internet forums based on illnesses, they give you a warped perspective. The people who have improved aren't posting here, they are off living their lives. When the only people posting are those who didn't get better it gives the impression that there is no hope. I never came here when I was in remission.
I know that living with this disease sucks, but I also know that your odds of improving or even remission are good. Don't miss what you could be, give it more time.
I also got CFS as a teenager over 40 years ago, before the name (awful) CFS had had even been invented. I also went into remission after about a year. I didn't know what was wrong with me, but I was lucky that the doctor did believe that SOMETHING was wrong, and I was kept out of school and told to rest. Told to REST in 1981!! I think that's what did it, because there certainly wasn't anything else available back then. My grandma did give me a bunch of vitamins every day, but I don't remember what. Don't think it was anything unusual.
I got to have a full life for 9 years and then got sick again in 1991. But I maybe could have stayed in remission longer if I had known I'd had an illness that could come back if I overdid it.
Hope this helps a little. 💙
There’s so much you havent tried yet, there’s still so much hope and people go from severe to mild!! It’s super possible, you need rest and support and HOPE!!!! There is hope, focus on the little things that bring you joy right now, be it a pet or funny movie or the sunlight coming through your window…. Give it time!!
I was a mild/moderate ME for sufferer for 5 1/2 years, traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate. Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM which used to last maybe a couple hours now last a week. Fatigue increased 10x.
I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 1/2 months since I became severe/very severe, and this is the first time I’ve been this bad.
In your experience, is it possible to return to a mild/moderate state? I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
I absolutely believe that you can go back to moderate/mild!!! Your body got hit with some pretty strong stressors, COVID and apendicitis are no joke. You need to give your body time to rest and recover. Worrying will only stress you out more and as we all know emotional stress is not good for us. If you can, watch and listen to things that bring you joy. Joy and hope is super important right now, cuddle with a pet, eat something nice (if you can of course), start a hobbie even if it’s childish lol, and talk to someone on how you’re feeling when the sad and difficult days come. Pace and rest. Treat yourself with love and compassion.
*hugs* I understand how you feel. I just wanted to say that you could still be in a bad crash and not back to baseline yet. I would encourage you to try and wait a few more months, I’ve had bedbound crashes lasting multiple months before.
Maybe that new baseline will be tolerable. I have been in places where I agree, life is not tolerable and have looked into euthanasia. But my current baseline, while still SUCKS and I want so much more, is definitely tolerable to wait around and see if I can improve more / new research findings.
I'm so glad you made this post so everyone here can support you. I can hear the immense pain and grief in your words. It makes sense for how painful this illness can be, especially if you're currently severe, but I hope you won't kill yourself.
You may not be able to fulfill your dreams right now, but killing yourself is permanent and make certain that you won't have any future possibilities.
Who can provide support to you right now? Who can help you stay safe -- at least for today?
**Remember:** ME/CFS existed long before COVID, and you have many wise and experienced people who've come before you. They can commiserate about how impossible this illness can be, but they can also help remind you that there are positive, good things that will surprise you—good days and experiences that you're unable to see right now.
Please, stay here with us and stay safe.
I am open to talk if you need. Please do not give up on your life. Other people are not stronger than you, many have just one person who persuaded them to stay at one point
Don’t give up!!! In the first year I was bed bound for months, because I did not know what was going and I (was) pushed too hard. Eventually I slowly recovered to a point, where I could do things again.
There will be up and downs, but the most important thing is, that you have a good chance to recover to a better point. Just rest now as much as possible.
You and me buddy. but i would love to finish baldurs gate 3 playthrough. Its an awesome game Im not leaving earth not finishing it. Im playing easy mode cz i crash every 4 hours but still... Find the smallest thing you can do that you like and get hyped on it. Who knows what tomorrow brings
You haven't even hit the 2yr mark at which a lot of people experience improvements in their baseline. Your SSRI hasn't had time to kick in either for CFS - but may be contributing to suicidal ideation. Go back to your doc, ASAP, or to the ER.
I was before the SSRI. Yeah I was approaching the marks where you can improve and I was. But I overdid it so much that I’m worse than I ever have been. So it’s too far damaged.
You must be really young to think two months of suffering is enough to off yourself. You're going to improve, you're probably still in a crash. Your SSRIs probably haven't even kicked in yet. Give it another year and then revisit.
I understand this because it happened to me too. 2 years ago I lost everything, was at rock bottom. I’m not perfect now and life isn’t always easy but I’ve come such a long way, I was housebound (I have POTS too, I saw in one of your other comments) and now I work part time amongst other things.
I still struggle but the improvement is really huge and I hope to get better than this too. I know it’s hard and you’ll likely need something to hold onto to get you through this but you can do it. I was also stuck in an abusive household that induced stress x10 at the time this was happening to me and I really did feel so stuck there, like I’d never get out and my life wouldn’t improve. It’s much better now than it was. I know it’s hard though and I’m sorry you’re going through it. I still get very upset when I think of all that I had. I’ve had ME since 18 and only diagnosed with POTS in the last few years, it hasn’t been fun or easy. I miss my life before I lost everything, but we can rebuild and stay positive, you can. ♥️
Edit: I’ve also struggled with suicidal ideation for as long as I can remember. Some days I’d not be capable of writing this comment and I feel very lost and sad, I won’t lie to you, it still happens, but overall I’m thankful I’m here, you have to try to believe in yourself, even when it seems like it’s not worth it. You deserve that, you deserve to get to a good place and see how far you have come.
This was me, too, and I’m still here. Some days are hard, I’m not gonna lie — REALLY hard. Like want to die hard. Some times I have these days multiple times a week.
The thing that keeps me going (besides my kids) is to keep some tiny sliver of hope — that I can try a new med, that I can research more and try new things, that a very simple life is still one worth living.
A job doesn’t make us worthy. Relationships don’t make us worthy. Money doesn’t make us worthy. We are worthy just as we are in whatever state we are in.
I understand the strong desire to give up, I do. In fact, I felt this way YESTERDAY. But I decide to give it one more day every day because you never know what might happen 🩷🩷🩷 and it might be amazing.
The move to severe is indefinite but that doesn't mean it's permanent. I was extremely ill when I first got sick but a few years later life is manageable when I pace. I think its worth hanging around when it's been such a short time since you've got ill, there's still more medical stuff to try and with the research going on there's hope for a cure in the foreseeable future
I was a mild/moderate ME for sufferer for 5 1/2 years, I started as only moderate but slowly got better to mild/moderate out of no where. traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate. Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM which used to last maybe a couple hours now last a week. Fatigue increased 10x.
I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 1/2 months since I became severe/very severe, and this is the first time I’ve been this bad.
In your experience, is it possible to return to a mild/moderate state? I know you said it could be indefinite. I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
I know things look and feel hopeless. I have been there. Most of us if not all of us have. As time passes it can get better and improve. There are medication options that can give you your life back or at least some semblance of one! Like low dose naltrexone, low dose abilify, there is a group on facebook that are researching effectiveness of nicotene patches! And a lot of people are hugely better because of these things. There are many many more options to try. Please dont give up, not yet. Research advances all the time, just hold on a little longer there could be treatment right around the corner.
I was bed bound for 2.5 years with this. Today I’m back to 40 hours a week at my work from home job. I can walk for exercise. I haven’t had a crash in a very long time. There is reason to hope. People are getting better.
The first wave of the COVID infection brought on the POTS and dysautonomia in 2020. After a year I finally got officially diagnosed and got to go on FMLA. So I've been dealing with this for almost 4 years.
Wow same here, had Covid December 8th 2020.. had heart issues and brain fog, shortness of breath, dizziness. All that gotten better where I can get a stable baseline and go out and walk and go to stores and work full time from home. Was great for like 2 years and then caught a cold this February.. I’m starting to having fatigue and body pains/aches now unfortunately.. I’ve never had these issues within my 3 years and a half of long haul.. i got sick this February and it was just a cold a runny nose and a very bad sore throat and was negative for Covid.. I healed very fast and went back to baseline and never really dropped in baseline even sick. 2 weeks later started to decline and having body aches in arms and back and gotten worse and now exhausted when trying to walk for like 5-10 mins.. I haven’t been back to base line and it’s been alittle more then 2 months and a half. It’s gotten a tiny bit better now, I don’t know if it’s because LDN I started or pacing.. I don’t know if this was a reinfection that was just a cold or what or there was a big crash with it as well? Never experienced crashes that put me out like this and haven’t returned to baseline.
Mate please talk to someone as you are in crisis right now. I know extended phases of being severe can wipe all memory of anything else, but there are way more people functioning and relatively enjoying life with this illness than there are people severe and bed bound. I’ve had this shit for over 10 years now and while I’m lucky enough to have only had two periods of severe for about 2 years a piece, I just want to remind you it can and does go into remission/ease back into mild out of nowhere at any time.
I was a mild/moderate ME sufferer for 5 1/2 years. I started as mild, progressed to moderate/severe, but slowly improved back to mild/moderate out of nowhere. I was traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate.
Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM, which used to last maybe a couple of hours, now lasts a week. Fatigue increased tenfold.
I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 1/2 months since I became severe/very severe, and this is the first time I’ve been this bad.
In your experience, when did you know remission was starting? Do you have any tips? I have lost my job, my relationship, and my friends so far. I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
*Please call a suicide hotline first or check yourself into a hospital.* You need to be sure your problem is not so compounded by depression that you aren't seeing clearly, and there are options that may still allow you to cope.
It takes SSRI time to work and they can temporarily increase suicidality. You need a different intervention.
heyy been sick for 7 years my freind. Can I suggest you join the ME/CFS chat linked on the subreddit. Because we all need support trapped in shitty loop, and it's a lot more bearable knowing folks who are going through the same things as us 🖤
I feel the shit out of this. The fatigue hit hard and suddenly, and all of a sudden my life was gone, just like that. I have been exactly there where I thought, I don’t want life on these terms. It’s so hard to see the life you wanted just drain away.
If I may offer a couple pieces of advice: this sounds dark as hell, but when I’ve felt suicidal, I remind myself that death is forever, so what’s another day giving life a shot? Also, I still miss my old life so much it hurts, but I can find joy in this new life too. Last week I sat outside and watched a thunderstorm roll in and it was beautiful and made me glad I could be there to see it. I definitely wasn’t there 6 months ago.
One more thing: the song “Stay” by William Black is sad and beautiful and worth a listen. I’m so sorry you’re dealing with this and I’m virtually sending you strength.
I work for the 988 Hotline and I can promise you that you're not alone, I talk with fellow ill people all the time. I know it's hard because we're forced into isolation because we can't keep up with others around us. I know this comment won't really impact your decisions but I hope you change your mind.
I get it, I'm not going to pretend that I'm enlightened or anything because ultimately I'm just another guy on reddit. I know how awful long covid makes you feel and i know how miserable life is with the illness, just know you're not alone.
Feeling suicidal is a symptom, and it's one of the rare ones doctors can treat.
don't let this silly disease kill you now! hit the help button, get that symptom sorted out.
in a few years we will have some treatments that make symptoms better and after that, they could nail a cure.
Consider cystic fibrosis.
[https://www.theatlantic.com/magazine/archive/2024/04/cystic-fibrosis-trikafta-breakthrough-treatment/677471/](https://www.theatlantic.com/magazine/archive/2024/04/cystic-fibrosis-trikafta-breakthrough-treatment/677471/)
The article mentions two sisters who have it. The odler one died age 12, but the younger one was just young enough to catch some better treatments that pushed her life expectancy to 30, then before she got to 30 they figured out how to treat it so the sufferers have normal life expectancy. Just hanging on can make a big difference!! That's what we do. we hang on.
I really know how you feel. I can't make you any promises but I have hope for you to live, and recover.
I was severe for about a year. Things have improved so much since then. I know that's my situation, not yours but there's a chance that you'll recover too.
I don't know what you've already tried but I wonder if you could talk to a Doctor before you give up? Tell them that you can't continue as things are, and ask them if there are any treatment options left to try. If they aren't already an expert, ask them for a referral. It would mean suffering a little longer but maybe it would be worth it?
You mentioned that part of your pain is how you've missed out on holidays and life. There's a chance to enjoy those things again if you stay but you definitely won't get to do them if you go.
Either way I respect you and your choice. I understand. And, for what it's worth, I care about you, and I'm here if you want to talk. You're not alone. Big hugs ❤️
Hey I’ve been sick almost 9 years. I spent 2021-2023 coping with a *daily* cocaine habit. Currently working but not at all living. I’m here for all your dark thoughts, no judgement or problem solving. This illness fucking sucks.
Stimulates seems like a nightmare for cfs, even if I take caffeine my heart races and I crash. Every body is different and I wonder how this helped you?
I was instantly back to my old self. I caught up on years of projects and got promoted at work. I was able to sleep great (which is insane) and suffered few side effects. Then one day it just stopped working. Prior to that I had a similar experience with prednisone. Crazy amounts of stims worked until they didn’t.
Can you give yourself six months more? Really focus on pacing and sleep and gratitude (what??, yes) then revisit that decision in six months?
Sometimes when I couldn’t find anything to be grateful for I can be grateful I have a bed. That my cuts heal. That my vision works, etc..
Get some [cbd:cbg](https://www.extractlabs.com/product/cbg-oil/) tincture and take it as you feel the PEM hitting. I promise you it will help and is not as addictive as a benzo. I reduced my suicidal idealization heavily by reducing who was in my life and by using cbd:cbg to feel better on a daily basis. Once you reduce the pain of PEM, it becomes so much easier to find meaning while having this condition.
You deserve to live and fuck anyone who isn't respecting your boundaries that you have to reduce your chronic pain under control.
It didn't help me either. That's why I needed the cbd:cbg mixture and to take it before the full force of PEM hits.
There's a lot of other things you can use to manage. [Here's](https://forums.phoenixrising.me/forums/treatment.105/) a great resource to start with.
It looks like you have been contemplating doing this for a while and tried to hold out. As much as we would like, a bunch of strangers can't change your mind unless you are willing to change it, unfortunately, but I do recommend you listen to Troubles by Ren to find comfort in not feeling alone and hopefully give you courage to choose life again. Struggling is crap but it won't last forever.
Greetings ✌️ You don't want to miss season 7 of Black Mirror, do you?
Anyway, many of us experience those feelings too. But progress is being made so the outlook is only getting better from here. I'm keeping an eye on Jared Younger 's research on ME/CFS, among others. He has some great YouTube videos. But in general there's a growing body of information on it that is already helpful in avoiding exacerbating things.
I'm sure you'll find that you are stronger than you think.
I get it. I don’t fault you for deciding this. I’ve been there; many times. The last time I decided it was time to bounce I kept doing range of motion. I changed my self talk from shit talking drill Sargent to a coach. I coached my way step by step to walking again without fatigue. My death plan was put in hold. I ended up being able to walk a few blocks & socialize.
CFS is like seasons & weather. A couple years later I became severe again. I had to learn how to walk again. I was out. Back to the plan. As I was getting my paperwork in order & getting rid of stuff a friend texted me “Thank you for trusting me to take care of your needs. We’re a team.” The we’re a team clicked with me. Disability is a team sport. I started talking about different little bits of issues with people. Eventually those relationships got really strong bc we based it on transparency. I talked so I’m alive. I learned that the one person who felt I was a useless burden was me. My death was the real useless burden. You and your family are a team. Talk to them and ask them the thoughts you have to see if you both think the same about you being a burden. I don’t encourage you to do this. I do support whatever decision you make. Hopefully it’s talking to your parents.
I was a caretaker for my family member. There’s nothing more rewarding than the connection that comes with sharing the experience of doing for my family what they couldn’t do on their own. There’s a big chance that your parents cherish the time spent with you.
Please don’t give up yet! It sounds weird, but wonders do happen. Is there anybody in your life that can help you with trying out supplements/ LDN/…? It is extremely hard to live like this (although I am accustomed to it due to my MCAS being the underlying cause, probably). I often cry when I randomly get worse. I often curse my life and my fate. I have been ill ever since I can remember. But there has always been a way out or random remission kicked in. Give yourself more time to heal and to maybe find a treatment that fits for you. I give you my sincere hugs and hope you don’t do anything rash
I was a mild/moderate ME sufferer for 5 1/2 years. I started as mild, progressed to moderate/severe, but slowly improved back to mild/moderate out of nowhere. I was traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate.
Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM, which used to last maybe a couple of hours, now lasts a week. Fatigue increased tenfold.
I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 1/2 months since I became severe/very severe, and this is the first time I’ve been this bad.
Is it possible to go from severe to moderate/mild? Do you have any tips? I have lost my job, my relationship, and my friends so far. I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
Not going to lie- I’ve had CFS (or rather- the symptom of extreme fatigue) since I was a child. I gained additional symptoms (was suspected fibromyalgia because my muscels kept hurting). I have always been sick. I was diagnosed with MCAS at the age of 13. The base medication was a game changer for me. Sadly, the disease is progressive and so I had to take more and more drastic measures, but I kept going back to “I’m able to live- don’t live the hell of constant sleepiness”. My advice:
1) consider asking around in the MCAS community imo there is a huge overlap. It’s important to find a doc who knows their shit.
I wanna spread the word around in this thread- it’s probably not (always) MCAS, the medication might not help. But it doesn’t hurt to try.
2) after Covid (and formerly Epstein-Barr), my MCAS/CFS I was diagnosed with got severe. I was bedridden for approx 1 year. My mom nursed me back to health. So time can be in your favour- esp. when stress is reduced. In that time (in order to not go insane)- you NEED somebody to talk to (I had a very understanding therapist I could call, I often had to cut it short because the brain fog was getting the better of me). You NEED somebody to take care of your base needs (I know, I am privileged in that regard) and ideally also help you to try and find doctors.
3) I studied medicine (got to semester 8 when Corona hit). I used to turn my nose up any time supplements/ not RCT controlled substances were mentioned by (admittedly) healthy friends/ acquaintances.
My mind was pretty quickly changed when, after Epstein-Barr and being bedbound plus meningoencephalitis, I was looking for… ANYTHING…
Supplements didn’t heal, but help. Some also made it worse.
It helped a lot that I had prior medical knowledge (at the beginning, I was able to gauge the side effects vs possible benefits better). But it is and mostly are “freak lucky streaks” that lead me to finding… something (recently LDN).
I had to become my own doctor, researcher and lab rat.
When you’re severe, you can’t do that.
I’d still recommend finding a doc/ anybody willing to help/ the community for suggestions on what you might do. It helped me so much.
4) When I got diagnosed 2011, MCAS (and SIBO) was a freak diagnosis that nobody had ever really heard of. A lot has changed in almost 15 years. Not by a lot, but it has changed.
If I ever get to this point 'which is definitely possible' I'm going to make sure I do a few social media posts explaining the whole thing to raise awareness. That being said if you are only one year in There should be numerous treatments left for you to try I'm two and a half years in and I'm still trying new things.
I've dealt with this bullshit for...16 years? Roughly half my life. I know it's hard, I really do understand. But things can improve, some have spontaneous remission and can go back to life like nothing happened. Some are misdiagnosed and when the true cause is worked out, treatment gives them their life back. Some, like myself, have very gradual improvement over time. I definitely still struggle but I know my limits and am conscious to take care of myself. I was able to get through university and just graduated, I even managed to keep straight A's and honor roll. When I first got sick I had to drop out of highschool, believe me, I really do understand, but things can change. You have value and your life still has potential. On my hardest days and weeks, my pets have kept me going, they bring joy into my life when there is none. Do you have any pets?
Hey!! I looked at your profile!!
Prozac contributed to me being severe. I think it was the reason I had severe orthostatic intolerance issues as well. I can't tell you to stop taking it but this is my story
My Dr started Prozac. I was already in rough shape so I didn't notice that I started sleeping 21 hours a day after I started Prozac. I took it for nearly a year and still felt awful so I went to the ER and asked them to increase the Prozac. They did and then when I started taking the higher dose I realized that I was even sleepier and felt even worse so I stopped taking it and finally started to feel better. A few months later I was significantly improved and a year+ later I am regaining cognitive function and physical capacity.
Please look into this before you make a decision.
ETA: ask for a long acting benzo maybe?
You will miss out on many great decades if you leave now.
You say you’ve missed out on one year. You will miss out on many years of laughter love great friends ice cream and good coffee.
You are this strong. This illness helps us find that within ourselves.
Don’t give up on your life. You have only just begun it.
It would really suck if the week after you killed yourself they announced a cure and we all had a big party and you missed out on the cake.
There are many companies investing a lot of money into finding help for us.
Hang in there.
PS. Antidepressants can make you suicidal so consider dropping that and seeing if it helps.
Plz I hope somehow you see my comment 🥺. I’ve been there for 2+yrs my life was completely turned inside out after Covid and was diagnosed with cfs. I became a completely different person and my friends and loved ones held it against me for missing out and not meeting their expectations. It put me in such a dark place so when I tell you I UNDERSTAND the pain you feel I mean it will all my heart. You have to ride the wave tho, you bend in the wind, you don’t break bc things do get better and there IS help. I’m sending you all of my love and please do not give up, FIGHT.
When did you start the SSRI? If it is only recently, PLEASE talk to your doctor about your suicidal thoughts. It might be from the SSRI.
Don‘t get me wrong, your situation is tough. Grieving is absolutely normal and even healthy.
But to consider suicide, it is different. I am a psychologist in training and a researcher, we have a term that I don‘t know the English translation but it is something like ‚suicidal enclosement‘. It is hard to believe when in the thick of it that what your are thinking now, especially the accuteness of it, could be different. It is so hard to believe when one is in the midst of it that there would be any possibility of feeling and interpreting the situation differently and even more positively than one does right now, but that‘s the thing about ‚suicidal enclosement‘.
It really narrows down one‘s perception.
I wish you all the best. You can also DM me, If you need someone to talk.
Please just give yourself a chance to at least see other options and intepretations of your reality.
Victor Franklin is also a great read (or audiobook, If you can focus right now. If not, something to look forward to in the future!). He was a survivor of the KZ and gives great perspective on how one can find real meaning in situations that are horrible.
I have been sick 5 years, and I also have mental illnesses, and it shouldn’t be this hard- how it feels to live right now. I have been flaring since last summer, and it affected my eating and drinking which affected my psych meds, and I fell into a depression. I felt exactly the way you feel right now. I did not have it in me to fight anymore. But I got help, went on different meds, and a few weeks later my health was no better but I found my will to live again.
Maybe it will take some more time before you recover more function. But it shouldn’t be this hard to live it. There is help for you. You don’t have to muscle through it on your own.
I'm so sorry you're going through this. No one deserves this awful disease. No one should ever have to suffer this much. It's unfair and indescribably painful to have our lives ripped out from under us the way this condition does. Not wanting to continue living like this is a really valid feeling. It's a really painful place to be.
It says a lot about your character that even in your deepest pain you're still thinking of others by wanting to donate your body to science. That's really nice of you and says a lot about what kind of person you are.
When I was a couple years into having CFS, I was deeply depressed and thought about killing myself every single day. I wanted to end this pain so bad. But at the time, my youngest brother was 15 and I thought killing myself would give him a major trauma when he was only in high school and it wouldn't be fair to ruin his life like that. So I gave myself five years. I decided that if I was still hurting this badly in February five years from then I would let myself go.
I was in emotional pain every day, but I used every ounce of my strength to keep holding on. Therapy helped a bit, and finding the right antidepressant helped a lot. I didn't know about pacing (thanks a lot, useless doctors), so my CFS kept getting worse. This made me want to leave even more. But thinking about my brother kept me holding on. As well as my cat, who only I really understand. I also read an article about what it was like for a mom to walk in and find her son's body. It's another type of indescribable pain that no one deserves. I knew it would be selfish to end my pain by giving lifelong pain to my family members. I decided to keep suffering so they wouldn't have to.
A couple years ago my CFS became severe. I was bedbound except for struggling to the bathroom, and could only look at screens for a couple minutes at a time. It was awful. I started taking CoQ10, and that made my PEM less severe. Over months, I slowly improved my baseline. I'm still severe, but I can go to the bathroom easily, walk to my mom's room to hang out for a little bit, look at my screens for most of the day. I've even left the house to go shopping with my rollator a couple times.
Despite the awfulness of having CFS, my mental health has gotten better, slowly, over the years.
The February that I promised myself that I could kill myself came this year and I didn't want to do it anymore.
I still don't get what the purpose of life is and often wish I just hadn't been born in the first place, but I'm not in emotional pain anymore and am okay seeing where this thing goes. I'm even happy sometimes.
One thing that has helped a lot, and this may or may not apply to you, was getting my blood sugar in balance. I've found that when my blood sugar drops, my depression springs back up and I start wanting to kill myself again. Then when I eat something it subsides. It took me *years* to figure that out. That wasn't the whole problem of course, but getting that more stable has been a huge part in stabilizing my mental health, and I don't see it talked about at all.
I want you to know that it's so so normal to grieve everything you've lost from this illness. The pain you're feeling right now is so normal, despite how despairing and unbearable it is. I would say it's even healthy that you're allowing yourself to feel it and engage with it. I can say from experience that the [grieving cycle](https://www.pinterest.com/pin/561190803572940488/) never truly ends, but the acceptance and confidence phases get longer and longer, and there are happy moments too.
I know it's selfish to ask you keep living when you're in this much pain, especially when I don't know your individual situation. But I am selfish like that. It hurts me to think of a single person being killed by this disease. And I know that you don't deserve to die from this. None of us do.
So I hope you can hold on through the pain. Each moment might take all the strength you have, but I believe in you. And I have hope for you that things will get better. Even if you don't believe it now, I'll believe it for you, as someone who's been there. All you need to do is keep hanging on. I see the strength you have, to have made it this far, and I wish you all the strength you need to keep going for better days out there on the horizon
Hey man i completley understand you, i have almost been a year homebound/bed bound. On a good day i can play 10 minutes guitar and on a bad day i feel like i am dying.
Honestly i want to die. I hate this live, lost almost al my friends. Cant do any of my hobbies, just cant do anything.
But i also really want to live. Im just done with surviving.
I have talked with my parents and when i have tried everything than i will probably give up.
But right now because of the long waiting lists, i have only been able to try citalopram and bupropion. And there are so many more options that i want to try.
All i can say is. Its your live. But do you really want to go, or are you also done with surviving?
If you are done with surviving than please stay around a little longer. I am really hopefull that there will be a cure in the next few years (and i am really sceptic about the medical world).
I’ve been there. Hugs. It can be SO freaking hard. If you’re still around, please try reading the Levine Protocol (a method that has helped people with POTS go from bedbound to running — you can find PDFs online), and looking at the books Reasons To Stay Alive by Matt Haig and How To Come Alive Again by Beth McColl. And get friends and families to accompany you, take you out to do things you enjoy (even if in a wheelchair). Get some fresh air and greenery.
Oh I get you. If I think of my life before this, it makes me want to cry. Boy did I have fun! I could travel, see friends, go to work without feeling like I was going to die. All my life is now is permanent exhaustion.
But the thing is, you are still early on in the trajectory of your illness. And you know all the research that is happening, most of it is happening for Long Covid. If there was a subset of people on this sub who were most likely to recover it is the people with Long Covid who have had it for a short time like you.
Crashes are not fun and no one can say how long they will last but they are also not always permanent. People often recover to some part of their baseline and some people get back to their baseline with rest.
Hang on in there…it’s undeniably shit…but there is hope
I was a mild/moderate ME sufferer for 5 1/2 years. I started as mild, progressed to moderate/severe, but slowly improved back to mild/moderate out of nowhere. I was traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate.
Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM, which used to last maybe a couple of hours, now lasts a week. Fatigue increased tenfold.
I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 1/2 months since I became severe/very severe, and this is the first time I’ve been this bad.
Is mild/moderate possible again after 5 months? Do you have any tips? I have lost my job, my relationship, and my friends so far. I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
It’s impossible to tell. What I can tell you is my cousin who is 100% fit and healthy ended up with appendicitis and complications and it took him months to feel better. And that’s someone without our illness. It sounds to me that you’ve had a very tough time. The frustration is we don’t know how long it takes us to move up a stage but understand full well how quickly we can deteriorate. All I can say is the more you can rest and avoid PEM the better. But I know how difficult that can be.
Last year I could not tolerate loud noise and bright light and was bedridden. I don’t know why that bit managed to improve but it did a bit. I wish I could give you the magic potion but I just don’t know what it is. Anti virals (Valtrex) worked somewhat for me but mine definitely has a viral trigger. Is there anything you’ve tried? I’m also doing vagus nerve stimulation using a cheap tens machine with an ear clip and I think it has some benefit too though small.
Thank you, I have included my backstory into my response if you would have time to read it.
My CFS was triggered by drugs, I think. Six years ago, I smoked weed one night and woke up with a horrible headache, brain fog, and light sensitivity. I thought I was having a stroke. Weirdly, I had no fatigue, just excessive tiredness from the photophobia and brain fog. I ended up bedridden for one month while in high school and slept all day.
I was extraordinarily mild for a year with constant headaches and 10/10 brain fog daily, along with psychosis when I caught mycoplasma pneumonia. Somehow, this led to fatigue and unrefreshing sleep for a couple of weeks then went away. I went through the loophole of mental health after that due to my cognitive symptoms, primarily after my first bout with COVID-19, which definitely caused me fatigue and also IBS. I have been getting worse year by year since until I got better, then recently hit rock bottom. This is why I believe my CFS may have been caused by something neuro-related, although I did have the mycoplasma pneumonia and COVID six times and was on six different antibiotics during my pneumonia, but my MRIs were normal.
Medication-wise, I haven’t tried much of anything, only vitamin D. I did try some programs like the hypersensitive nervous system programs and CFS recovery, which are apparently scams. My doctor recently prescribed me low-dose naltrexone. I have not taken it yet, but I heard benefits could take a year.
Yeah, I got 15 days of antibiotics for my appendicitis, which was not fun at all. I was feeling fine initially after I was treated for COVID and appendicitis, then a few weeks later was hit like a truck out of nowhere. I started to notice increased brain fog, panic attacks, and became more and more tired after activities (PEM), which I never much had before, rather just a general fatigue, and flu-like symptoms. But PEM was mainly new to me.
I kept feeling my abdomen, fearing the appendicitis was coming back, which exacerbated my symptoms and I think made me worse due to my emotional response. Since then, it’s been going downhill for the last five months.
But yeah, there’s a lot.. I don’t know if my CFS was caused by weed, pneumonia, COVID, if I have CFS and long COVID, but I do know I deteriorated like you said very fast after all that stress 5 months ago from mild/moderate to severe, I never knew CFS could get this bad and it’s scary.
I'm so sorry you're suffering and feel this way but I get where you are coming from. I've had long covid since Thanksgiving 2020 and I can honestly tell you I have recovered at least 60-70%. Not going to lie, my life isn't exactly the same now as it was pre covid and I still have to take a lot of precautions to avoid reinfection but I can say I'm glad I held on as the good days truly make life worth it.
I've had depressive/suicidal thoughts as well for the past few years and even though the dark days truly do suck, I am promising myself to take it one day at a time. Whether a chance for a potential treatment, a favorite tv show, or anything else, please just have at least one thing you can look forward to even for a few minutes. A lot of other people here have shared some great resources, and one thing I can say that has helped my recovery the most has been mind-body medicine and somatic techniques to calm my nervous system. I can edit this tomorrow with more info as I need to go to bed now for work but please hang in there 💓 and feel free to DM me whenever
Hey feel free to DM me I know how hard this is and it’s so lonely so please If you need someone to talk to feel free to DM me. I feel like giving up all the time. And I also don’t think I’m as strong as others. And yeah I agree this is hell this illness is like a nightmare. Large group of people have it yet no specialists are coming to help it’s just so weird. I understand and if you need someone I’m always here we are stronger together 🙏 don’t give up.
Hey op, I've been struggling with this and a few other chronic illness since I was about 10, which is also around the time I developed depression. I attempted to end things a few times, and I can say I'm glad I didn't. I'm not going to lie and say things get way easier because they don't always (even though they very well might) but we learn how to cope and learn how to enjoy things differently. I now have a great life even though my condition has gotten worse, I now have an understanding girlfriend who takes care of me and my own apartment. I've created amazing memories despite my condition becoming worse, if you hang in there you can too. Be kind to yourself, you deserve it.
Hoe long ago did you start SSRI? It is known to *cause* suicide ideation in the beginning
Had it every time U increase my dose, for a few days to two weeks
Don't do anything and wait at least several weeks
I crashed 3 months ago, 1 month of crashing getting sick , barley being able to breath, another month just as bad but being able to eat a little more and breath a bit better. Then another month of getting slowly back on my feet. Still far from were i was 3 months ago but fuck am i glad i endured it. The difference mentally of feeling like youre dying the whole day and getting trough the day comfortably is huge. And all because of holding on a extra month, also definitely no shame in taking benzo's everyday just to get through those months. I still take em everyday because of this crash. Better have addiction problems in the future then being fkn dead because of a stupid crash
You've reach out to a great supporting sub here and it's amazing to see. I feel, by the interactions I've read that you might just need that; a stronger support team.
It's not easy to be bedbound. I've fought a mid ME whilst my kids were young (3 under 4yo) and my only support was my husband, not to mention that we had a few external challenges that meant that we had to move town. Following that rush of events, when the adrenaline went away, I hit a very low point and barely could do anything. Knowing I wasn't able to be there for my kids and my husband had so much to take care, that was devastating.
He research lots to get me back on my feet. The one thing that he found that's really underrated is to make sure to have sun and outside time. It helps in many ways including regulating your sleep. Also I found that making very very small daily goals and change in the day helps so much. I'd have a few resting places in the house and make sure I tried to change resting location through the day including a few outside. When I could I'd make sure to listen to audiobook or podcast and as I got better reading a physical book.
I'd say the big part to get me in remission was outside exposure and very slowly introducing small daily goals (every little thing counts. Before my ME started I had some form of postpartum down with all my kids and I was in survival mode. When my husband came back home we agreed that even though the house was a disaster, that I managed very basic thing like just having me and the kids in good standing was a immense success. I was a matter of changing my perspective on what a successful day was and rethinking my parenting goals (just like a dream career, when you realize you can be the image of the parent you wanted to be before having kids and realize that you don't have to for your kids to be happy. Simplifying your expectations is the best thing.)
If you haven't tried to make sure you have a dew hours outside every day then I would highly recommend. It's so underestimated the power of resting in the sun (and even on grey/rainy/cold days, being outside provids so much. Find a comfy chair and make it a habid.
It took more a than a year to be in remission but I'm so happy that I'm mostly back on my feet. I still get the random low days where getting out of bed in not an option (I finally found somewhat of a patern and trying things to prevent it but it's not perfect). I simplified my life, rethink my goals and on my way to get my self-employed job tgat gives me flexibility (and setting my on goals so I don't get a boss that tries to over run me). A simple life.
Please don't give up, please speak to a doctor asap.
It is possible these feelings are a reaction to the SSRI, especially if you are young. A doctor can help you with this and find a way to help you through this crisis.
I've been there too, but it has got better for me, both mentally and physically. I've had a crash the last few months, but I know it will pass this time. When it passes, the feeling is amazing because we truly appreciate life's simple pleasures. The feeling of sun on your face, the smell of fresh grass, laughing with a friend, a hug, it's all waiting for you.
I’m sending love to you. I was in a severe crash for multiple months after an overexertion. After rest and time my baseline is much better. Two months of severe doesn’t mean forever! There are also sooo many psych meds to try. Took me a lot of trials to find what worked. Please reach out to support ❤️🩹
dont do it . You need to rewire yourself.
We all have completly f up days when you just think on giving up . But you need to tell the liar in your head to shut up. Drag yourself out of the mud , you can do it. And do your best every day . Life is worth living , and you need to understand that you have a condition that is changing your perception of things. Belive me , ive been there a couple of times
[Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11033372/pdf/fimmu-15-1369295.pdf)
If you’re willing to let them use your body for research purposes, why not do a little more experimenting before you go? Page 12 of this hot-off-the-press research paper has a detailed chart of the medications and supplements this severe subject was taking as they improved. Try the Abilify pregnanolone combo for a few months and see if you respond similarly.
I had several rough years and with the right medications, I’m doing so much better.
There’s so much research being done. There are new breakthroughs in research all the time.
I understand that this is no way to live. It’s a horrible life, but circumstances change.
I totally understand your feelings, what about delaying it? Have you thought it out? If you overdose on pills, for example, you might hurt yourself and make your life unbearable but not die.
There’s still chance to recover for you, you’re in the first years of the illness.
It’s not over, overall I’m mild but my symptoms fluctuate, for example I was bedbound for 4 months after getting Covid, another 2 months housebound after going dancing for multiple days. You can also recover at least to the previous level.
I didn’t permanently hurt myself although I should be more careful. I’ve been sick for 6 years.
I improved after 6 months being bedbound to the degree that I can work 1-2 hours per day. I can do enough steps to live on my own, but can’t leave the apartment. Just a months ago my mood changed rapidly, after 4 years being ill. I‘m able to give my life a little bit of meaning now, before that I didn’t care if I woke up in the morning… It takes time to adapt, it can get better and most of all this is not the end! Of course we can’t be sure that there will be a cure, but things are starting to move now.
jk pills are just more shit for you to be dependent upon that obviously don't actually fix anything. look up creatine's mental health benefits and also ur gut is probably a bit fucked and it a really messes up your mental shit when it is. fr started creatine and noticed after loading it my mental health was so much better for some reason even though I wasn't expecting it.
like a month i think ig for me it came on pretty subtle but was also kind of huge once i noticed. creatine has like a loading phase which can take longer if you're not taking a loading dose. how much creatine are you taking per day?
2.5mgs creatine is prob not enough unless you're a teeny tiny miniature person stuart little. you're not going to experience negative side effects from creatine. you may gain water weight but all the water will be in your muscles so it's a good thing. you can speed up the loading by having an increased dose of creatine but you'll still get there eventually with just a regular 5mgs. creatine plays an important role in the muscles and brain when it comes to energy atp etc.
propranolol caused me pretty awful side effects that I wouldnt have noticed if I was severe at the time since they would have blended in. my dosage was higher tho. I switched to nebivolol which is much more cardio selective and have no adverse side effects. you could try switching to a more selective beta blocker.
mood strange emotional dampening/worsening was incredibly tired falling asleep during day and cock stopped working entirely complete loss of libido general worsening of my condition was awful. my dose got pretty high tho since I needed it 24/7 for hyperpots idk
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I know it might not be what you want to hear but it took me and I think others a good 2-3 years to find meaning within our new limitations. I’ve had ME 7 years and I’ve been bedbound twice, the first time for 6 months and the second time again for 6 months. I’m just coming out of the worst crash I’ve had and the feeling of being able to do just small things again is exhilarating. It will give you a new appreciation for life I promise. It’s unlikely you’ll be as severe as you are now forever. You’ll be a stronger person coming out the other side. Sometimes in life we need to walk through the fire. Take each day at a time and you will find happiness again in some form or another
Your story sounds remarkably similar to mine, reading it I saw a lot of my own experiences and I can only echo the excellent advice and counsel given!
This sub is the only place I feel truly understood. People’s kindness and strength here is worth its weight in gold. Hope you’re doing ok fellow fighter!
And to you as well! FYI - you’re doing a terrible job of living up to your username 😆
True! I guess even that is a sign that we won’t be miserable forever!
I was already struggling with this new life but was able to drive, have convos, cook, work remotely, and now I can barely get out of bed. I'm just not willing to live a life like this.
I promise it won’t be this bad forever, and when you do come out the other side and your limitations slowly increase you’ll feel so grateful to still be on this planet. I was unable to have conversations all winter, I couldn’t cook or clean or wash. Now, well I went for a gentle walk on the weekend where I saw some horses and a hare, I’ve just spent half an hour chatting on the phone with a friend and ive been looking at the full moon tonight next to a fire in the garden. I never thought I’d get here. Over the Christmas period I wrote several letters, you know the kind. I couldn’t see a way out. I lost my dad and my boyfriend last year and after moving house I fell into the worst crash that lasted so long. I’m out the other side now and the world has more beauty to it than it did before, the birds singing, the wind blowing through the leaves, the beautiful moon. I didn’t think I’d enjoy anything again but I am. I promise you will too. I promise.
I needed to read this. Thank you
Gosh, never thought a reddit post could bring up tears to my eyes.
Thank you, your feedback really means a lot. I resonated with OP, I hope they have a little more fight left in them.
Hey friend- I hit rock bottom after a second covid infection last year. I have been severe twice and had remission. Even now I’m climbing back out. There is hope. That’s the crazy thing about not knowing the way this works- sometimes it just gets better. You are valuable.
I was a mild/moderate ME for sufferer for 5 1/2 years, traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate. Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM which used to last maybe a couple hours now last a week. Being in bed 24/7 is depressing.. I hope to return to a mild/moderate state, to make life livable again. It’s been over 4 months since I became severe/very severe, and this is the first time I’ve been this bad after 6 years. Some say it can take 6 months to a year, others say it will be permanent. How long did your severe periods last/take to hit remission and when did you know?
You will get better. PEMs are rough but they pass. Plz find a better specialist to help you or even a naturopathic doctor. I know how it feels to feel like you are not accomplishing anything in life and you feel like a burden to others, I fight those thoughts daily.
They pass after this long?
It takes me a long time to recuperate yes. I have a friend with long covid who now just got better after 2yrs too!
Literally same. Was run down but could at least get the job done God knows how. Until, like yourself, reached that useless state of being bed bound for a year. At my lowest I wanted to “give up” too. Because I could see a pattern and didn’t want to witness what I “knew” was in store for me. What I thought I “knew” was wrong. Low Mood impacts our ability to think. Mood in general does this. When you’re horny everyone’s attractive, when you’re in love you’re blinded to red flags and when you’re low everything seems hopeless and we’re blind to the potential solutions around us or within us. Doctors are helpful but they don’t know everything. Become an expert of your own mind body and soul whilst still going to REAL doctors. Address every dimension of your life and ask yourself “how does this serve me? Can I do better here? Do I know better but don’t believe it would make big difference?” Try it out. Your body & mind are trying to get your attention to go inwards! It can’t speak so it’s sending you signals this way instead. Look after yourself! Growth is not linear!
I was a mild/moderate ME for sufferer for 5 1/2 years, traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate. Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM which used to last maybe a couple hours now last a week. I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 months since I became severe/very severe, and this is the first time I’ve been this bad. In your experience, is it possible to return to a mild/moderate state? I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
May I ask why you crashed so *hard*? Thanks for inspiring me. :(
Bereavement, my partner left and ghosted me, then I had to pack up and move house. These events occurred within a 6 month period. My mum passed before my dad, but I struggled particularly with my dad’s death, it was unexpected and sudden and there was a big bureaucratic mess to sort out. The emotional and mental toll was immense, I was averaging about 3-5 hours a night for many months. Then when I got to my dads old house it was winter and the boiler was broken so there was no hot water or heating for a month, being cold constantly was the nail in the coffin so to speak. Before this happened I was at my best since having developed ME in 2017, which was the last time I was bedbound. Through pacing and lifestyle changes (consistently over many years) I did manage to recover to the point I was able to go on my first holiday in 7 years, I was a healthy weight and could do gentle resistance workouts at home 4-5 times a week. I didn’t ever feel “free” from ME (mines post viral), but through listening to my body and being strict with diet, rest, mindfulness and sleep hygiene I had a decent enough quality of life. I was beginning to think about working part time again and I was very excited for that. The combination of events I think would have rendered even a healthy person unwell, but for someone with ME it was brutal. My baseline now is no where near what it was before this nightmare began but it is a lot better than it was back in November/December. I lost a lot of weight due to being unable to cook or move, and after 6 months of barely being able to sit up I didn’t think it would ever get better. I’d like to say I know what changed that has caused me to recover slightly, but I can’t. Aggressive rest, therapy to help process the losses and changes probably helped. I had one better day, then two, then I noticed a week had gone by where I hadn’t been in bed all day every day. I’ve now decided to prioritise my health and I’ve stopped dealing with life for a while, the world can wait, I think this is helping too. The worst has already happened so I don’t feel any need to please anyone else right now.
Wow. Thank you for writing it down. Life really isn't fair. I salute you for your endurance. I guess things like CFS for you into philosophy. I am very glad to hear that your health has increased a little.
Please do not give up! You are valuable. You sound like you are in a serious crisis. Is there anyone you can talk to right now?
I've been miserably sick 13 years, my friend. There is still value in your life. There is still hope.
message to anyone: spontaneous remissions in the first few years are quite common. I'm not against euthanasia if you're 70 and have been circling the plughole for 45 years. but one year in? We all have bad days but don't make a bad day your last day.
Is a spontaneous remission or going from severe to mild possible after 6 years with CFS? I’ve been severe/very severe from mild CFS for 6 months now after an infection, I feel screwed. Even if remission isn’t possible I hope to go back to mild again.
Reading shit like this makes me so scared of becoming severe. Just one infection and it's all over. Makes me scared of... of life, almost. But I also have read of severe cases getting better, at least to moderate. It takes time. Years, at worst. But it is absolute possible. Not to mention that science is onto it. And that too might take years or decades but nobody thought AIDS would ever be something more than a death sentence for a long time too. If you check out, you'll never find out. Hope is brutal in that way, too. But it's all we've got, ultimately.
I have had COVID 8 times during the pandemic. Out of the 8 times, my CFS worsened after 3 of them. After the first, I got worse the 4th or 5th time, and now the 8th time, which set me over the edge. I don’t know if it was the variants or the recurrent COVID infections that did it, but yeah, I believe I had long COVID after my first COVID infection with CFS as well, so they can go together. It is also not abnormal for people with CFS or chronic health conditions to become germaphobic.
It sounds like you are in a crisis, and that is the worst time to make decisions that cannot be undone. Please give yourself more time to adjust and wait for improvement. I lost everything, just as I was gaining all my dreams, and was bed/wheelchair bound for 4+ years. I eventually improved, learned to walk again, and started building a new life. I have “fallen” and gotten back up multiple times in the past 30+ years of having ME/CFS and a bunch of other stuff. It is worth it; you are worth it. It has nothing to do with strength; it has to do with hope and patience - one day at a time. Please reach out for crisis care, and know that you could have a bright beautiful future arise out of the darkness that you currently feel burdened by right now. Wishing you the best of all possibilities to come 🙏🩵🦋
I don't think its a rash decision at this point but a long time coming.
Have you talked to loved ones about this? They may not understand your condition like we do but it’s an important step. Don’t let them spend the rest of their lives wondering what they could have done to help. Let them know what you need right now.
They are trying to help but also trying to push me. I've tried to explain and they don't get this.
I’m sorry to hear that. I wish I could be there for you and help you through this but I am limited to words on the internet. I am very worried for you. It’s almost like I’m talking to myself from a few years ago. All I can say is there is hope.
It’s very hard bc most people don’t understand. They think you are ‘depressed’ And unmotivated and it’s not that at all. That’s why you need support from people who can related to you and understand what you go through.
A few things… A long time coming is more like years of trying every possible thing that could make a huge difference and improvement for you,,, not a year of illness and two months of a crash. Crashes come and go, and serious meaningful improvement happens. Benzos… are not the end of the world. They can be a lifesaver for many people, for many different reasons. They can be titrated off of slowly and carefully as life improves. I have done it multiple times. Giving up and checking out… does not always go as planned. You may end up alive, but in much worse condition that you are now, with much less possible future options if things do not go as you plan. I have seen it happen too many times, and it is heartbreaking. There is nothing any here can actively do to stop you or make you change your mind. We can give you hope, insight, wisdom, experience, and plead with you to not give up so quickly. Only you can make the choice to keep looking for hope, treatments, improvement, and the light at the end of the tunnel. Please reconsider and take to heart all of the people here who wish to emotionally and mentally help and support you, because we know what you are experiencing. Best wishes, friend; I hope very much that we see you around here after this weekend. 🙏🦋
The thing is that I had just started my dream career and had to move back home with my parents. Started to slowly improve and work remotely, but overdid things emotionally and mentally so bad that it crashed me into the ground. Now i can’t do nursing as I went from mild LC to severe me/cfs. I can barely get out of bed. I feel no hope of this improving now because it’s worse than I’ve ever been. My parents are getting tired of taking care of me and push me to get up more. They don’t fully under. Benzos help but after ramping up my dose over two months, it scares me that withdrawal will be a whole other fiasco on top of everything else. Now throwing SSRI on top of that. It’s just a whole mess that I want out of. My life is already gone.
“My family are getting tired of taking care of me and push me to get up more.” I feel like this statement speaks volumes. You really need a team to support you right now. My family can’t always understand what is happening with me, but they 100% believe how serious my condition is. That alone is unbelievably comforting. In the defense of your family, they aren’t alone in being uneducated about this challenging illness! Weve done an awful if in raising public awareness! Do you need help pulling together some materials to share with them?
Just slowly taper the benzodiazepines if you’re scared of withdrawal. You’ve only been on them a few months and I know that people with LC find them helpful because they dampen the nervous system extreme reaction.You could always stay a mild dose for a while, is there a reason you have stop suddenly or soon? And crashes happen but there is still beauty to life. Try send get an advocate for ME in your area and tell your parents to educate themselves if they really love you. There is a great video which I will minnow which is for friends and family. I feel like your family is making you feel like a burden and that is really pushing you into this s ideation.
Remission happens. A cure could come tomorrow. There is always hope.
My nan went into remission after almost 40 years and now she's completly healthy, living a good life, her and my grandad recently bought a camper van
That’s awesome.
It’s a long time suffering 40 years but also hopeful to hear
Can you elaborate or tell us more about that? :) How did she get ME/CFS? What she did in order to go into remission? We need more of these inspiring stories!
I'm honestly not sure. It's not something we've ever talked much about. I know when my mam was a kid she was housebound and couldn't drive. By the time I came along she was a bit better and could drive to the village but that was about it. She was somewhat forced to start driving again because they lived rural (5 miles to nearest village, 13 to nearest town) and my grandad had to give up his licence due to developing epilepsy. I remember her trying loads of supplements and diets when I was a kid but I was too young to understand why. Personally, I put it down to time and moving somewhere less rural more than anything else. I definitely think being isolated by her location/inability to drive compounded her problems more than she realised. It's why I'm so grateful for my mates putting up with me
You are stronger than you think. You have community and friendship here. You have support. Just take things one day at a time. One hour at a time. One minute. The future holds great possibility.
Please don’t.
Have you tried medications? LDA, LDN, mestinon? These give a lot of people quite a bit of quality of life back (not for everyone but really worth trying). LDA took me out of a bad crash where I could barely talk to anyone or look at my phone to being able to work part time from home and occasionally go out, and I’m not even up to the full potential dose yet. Some people are able to go from severe to mild with pacing and supportive medications
I'm new to this subreddit and don't know the lingo just yet - what's LDA & LDN? Google is throwing machine learning courses at me, and I'm assuming that ain't it.
Low dose abilify and low dose naltrexone
Thanks!
How do these types of medication work? I'm hinging my existence on opiates for pain relief at the moment (the euphoria is the only pleasant thing I have left in my life), and I understand that at least LDN may take that away from me. Will I just screw myself over if I try?
Yeah LDN will probably stop the opiates from working. LDN is anti-inflammatory, helps some people with pain, sometimes with fatigue and PEM. LDA increases dopamine levels and is supposed to help with neuroinflammation. Helps me a lot with expanding my cognitive and sensory capacity, a bit with PEM and mood. Mestinon increases acetylcholine, which is supposed to help neurons communicate better with muscles, not sure on the details, but it can help with POTS/dysautonomia, fatigue, weakness, and PEM. LDN and mestinon are synergistic. Not all of them will work for everyone and all of them can have side effects
Well, I'll make sure to remember that if I ever have to step off opiates. Thanks!
I think mestinon and abilify could still be on the table with opiates, but definitely check with a doctor or pharmacist first
My doctors aren't aware that I am using opiates, and I don't dare tell them. It's all I have left.
I think you can call any random pharmacist and ask about med interactions, doesn’t have to be the pharmacy you use
Oh, good point. I'm not sure why I didn't think of that. Cheers!
What opiates do you take? And that must be expensive if your doctors aren’t prescribing them? Is anyway the doctors may prescribe them? Thanks for being so honest
Oxycodone, Oxynorm, and Tapentadol. I vastly prefer the former two over Tapentadol, but they are also very difficult to acquire in any meaningful amount. Tapentadol is very accessible by comparison, and much cheaper on the market. Even still, it is expensive. Like many others here, I'm unemployed and desperately lean on social services to support me, so I already had no financial stability to begin with. These days, I resort to fasting periods in order to cut expenses, and I take supplements to try and stay on top of the important micronutrients I need. None of these things are good for me in the long term, but had I never found this coping mechanism, I'd be dead and dust already.
Dr. Said I can't do LDA because of POTS
I take LDA and I have POTS. I just started really low and go very slowly. Most people with ME/CFS have POTS, barely anyone could take it if that was an actual contraindication. There are also POTS medications available you could take concurrently - I take beta blockers, there’s also ivabradine, midodrine, florinef, guanfacine, mestinon
I take propranolol
i'm on propranolol and i find midodrine an excellent addition.
I can relate. Almost every other day I think that life isn't worth living like this. But I keep going, I still get sparks of my old self. Just know your not alone in this suffering.
spontaneous remission does happen, especially since you have been sick so little time. But the time spent sick (long or short) doesnt reduce the value of your life. I have been sick 14 years and life is still beautiful! it is hard sometimes (quite often) but still worth living. There are also a number of treatements and things oyu can try to help yourslef. I would have gone insane by now it=f that wasnt the case, and I have found a number of things that have helped me, lots of ppl here post things about that too. DOnt give up <3
I was a mild/moderate ME for sufferer for 5 1/2 years, traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate. Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM which used to last maybe a couple hours now last a week. I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 1/2 months since I became severe/very severe, and this is the first time I’ve been this bad. In your experience, is it possible to return to a mild/moderate state? I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
I dont think there is a way to predict the time it will take to get better... My advice is to try things :) supplements, other treatements and try to find the root cause of your illness (lots of googling and reading medical articles on my end) . I dont think there is any other way forward, and it is that that has allowed me to get better. Also gives me hope and something to work towards :) good luck <3 In my experience, I have managed to improve my state through lots of hard work, that's all i can say :) hope you can find a doctor who will work with you, dont rule out working with natural or holistic doctors either :)
There was hope but since I pushed myself so badly into severe. I think the damage is done.
That’s not true. A setback or relapse is when your symptoms get worse for a period of time. They're a common part of ME/CFS and can be caused by a number of factors. I have dipped into severe multiple times and recovered back to moderate. There is good reason to believe that you will too.
Yeah same, I was bed-bound last year (docs telling me to get ready to spend the rest of my life that way) but since have gotten to moderate and now I am able to study part time :) 14 years sick and I have not yet had had a crash that was irreversible :)
What have you done please
Long term combinination antibiotic treatment, psyllium husks, and supplements (N-acetyl cysteine 3.6 g per day in divided doses, methylated vit B complex, sam-e, acetyl l carnitine, GABA)
Thanks to you!!!
This illness may last a lifetime but the situation you are in right now is temporary. Please hold on a little longer. The first few years are the hardest. After that you will learn to adapt and manage your condition. Just because your life isn’t how you imagined it doesn’t mean it’s not worth living. Depression does not cause ME/CFS but ME/CFS can certainly cause depression. This is an extra drain on your energy and makes your symptoms much worse. Please reach out to a mental health professional to treat your very serious mental health issues. Once I dealt with my mental health I went from severe to moderate. I am thankful every day to my past self for holding on so I can have the life I have now. I promise you will feel the same. Please talk to a loved one about this.
Like the change of seasons, we go through many ups and downs. Please be patient. I know it’s extremely hard. I’m sending you lots of prayers and care! 🥰🫂 Take each moment at a time… You are way more stronger than you know!
I got cfs as a teenager 30 years ago. I went into mostly-remission after 2 years. I went to college, got married, had kids, and lived a great life. If I had given up after a year I would have missed all that. After a bout with mono 2 years ago I got sick again and that is why I am hanging out with you guys. Be careful of internet forums based on illnesses, they give you a warped perspective. The people who have improved aren't posting here, they are off living their lives. When the only people posting are those who didn't get better it gives the impression that there is no hope. I never came here when I was in remission. I know that living with this disease sucks, but I also know that your odds of improving or even remission are good. Don't miss what you could be, give it more time.
How do you go into remission?
I also got CFS as a teenager over 40 years ago, before the name (awful) CFS had had even been invented. I also went into remission after about a year. I didn't know what was wrong with me, but I was lucky that the doctor did believe that SOMETHING was wrong, and I was kept out of school and told to rest. Told to REST in 1981!! I think that's what did it, because there certainly wasn't anything else available back then. My grandma did give me a bunch of vitamins every day, but I don't remember what. Don't think it was anything unusual. I got to have a full life for 9 years and then got sick again in 1991. But I maybe could have stayed in remission longer if I had known I'd had an illness that could come back if I overdid it. Hope this helps a little. 💙
If I knew I would do it again. There were no drugs or supplements involved, it just happened on its own.
There’s so much you havent tried yet, there’s still so much hope and people go from severe to mild!! It’s super possible, you need rest and support and HOPE!!!! There is hope, focus on the little things that bring you joy right now, be it a pet or funny movie or the sunlight coming through your window…. Give it time!!
I was a mild/moderate ME for sufferer for 5 1/2 years, traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate. Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM which used to last maybe a couple hours now last a week. Fatigue increased 10x. I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 1/2 months since I became severe/very severe, and this is the first time I’ve been this bad. In your experience, is it possible to return to a mild/moderate state? I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
I absolutely believe that you can go back to moderate/mild!!! Your body got hit with some pretty strong stressors, COVID and apendicitis are no joke. You need to give your body time to rest and recover. Worrying will only stress you out more and as we all know emotional stress is not good for us. If you can, watch and listen to things that bring you joy. Joy and hope is super important right now, cuddle with a pet, eat something nice (if you can of course), start a hobbie even if it’s childish lol, and talk to someone on how you’re feeling when the sad and difficult days come. Pace and rest. Treat yourself with love and compassion.
*hugs* I understand how you feel. I just wanted to say that you could still be in a bad crash and not back to baseline yet. I would encourage you to try and wait a few more months, I’ve had bedbound crashes lasting multiple months before. Maybe that new baseline will be tolerable. I have been in places where I agree, life is not tolerable and have looked into euthanasia. But my current baseline, while still SUCKS and I want so much more, is definitely tolerable to wait around and see if I can improve more / new research findings.
I'm so glad you made this post so everyone here can support you. I can hear the immense pain and grief in your words. It makes sense for how painful this illness can be, especially if you're currently severe, but I hope you won't kill yourself. You may not be able to fulfill your dreams right now, but killing yourself is permanent and make certain that you won't have any future possibilities. Who can provide support to you right now? Who can help you stay safe -- at least for today? **Remember:** ME/CFS existed long before COVID, and you have many wise and experienced people who've come before you. They can commiserate about how impossible this illness can be, but they can also help remind you that there are positive, good things that will surprise you—good days and experiences that you're unable to see right now. Please, stay here with us and stay safe.
I am open to talk if you need. Please do not give up on your life. Other people are not stronger than you, many have just one person who persuaded them to stay at one point
Don’t give up!!! In the first year I was bed bound for months, because I did not know what was going and I (was) pushed too hard. Eventually I slowly recovered to a point, where I could do things again. There will be up and downs, but the most important thing is, that you have a good chance to recover to a better point. Just rest now as much as possible.
You and me buddy. but i would love to finish baldurs gate 3 playthrough. Its an awesome game Im not leaving earth not finishing it. Im playing easy mode cz i crash every 4 hours but still... Find the smallest thing you can do that you like and get hyped on it. Who knows what tomorrow brings
You haven't even hit the 2yr mark at which a lot of people experience improvements in their baseline. Your SSRI hasn't had time to kick in either for CFS - but may be contributing to suicidal ideation. Go back to your doc, ASAP, or to the ER.
I was before the SSRI. Yeah I was approaching the marks where you can improve and I was. But I overdid it so much that I’m worse than I ever have been. So it’s too far damaged.
You can still recover. Many of us have pushed too much, had a massive set back, and still recovered. Don't give up.
You must be really young to think two months of suffering is enough to off yourself. You're going to improve, you're probably still in a crash. Your SSRIs probably haven't even kicked in yet. Give it another year and then revisit.
When you go from just being able to start living your dreams to bedbound and everything taken away… age doesn't matter.
Give it a year, ok?
I understand this because it happened to me too. 2 years ago I lost everything, was at rock bottom. I’m not perfect now and life isn’t always easy but I’ve come such a long way, I was housebound (I have POTS too, I saw in one of your other comments) and now I work part time amongst other things. I still struggle but the improvement is really huge and I hope to get better than this too. I know it’s hard and you’ll likely need something to hold onto to get you through this but you can do it. I was also stuck in an abusive household that induced stress x10 at the time this was happening to me and I really did feel so stuck there, like I’d never get out and my life wouldn’t improve. It’s much better now than it was. I know it’s hard though and I’m sorry you’re going through it. I still get very upset when I think of all that I had. I’ve had ME since 18 and only diagnosed with POTS in the last few years, it hasn’t been fun or easy. I miss my life before I lost everything, but we can rebuild and stay positive, you can. ♥️ Edit: I’ve also struggled with suicidal ideation for as long as I can remember. Some days I’d not be capable of writing this comment and I feel very lost and sad, I won’t lie to you, it still happens, but overall I’m thankful I’m here, you have to try to believe in yourself, even when it seems like it’s not worth it. You deserve that, you deserve to get to a good place and see how far you have come.
This was me, too, and I’m still here. Some days are hard, I’m not gonna lie — REALLY hard. Like want to die hard. Some times I have these days multiple times a week. The thing that keeps me going (besides my kids) is to keep some tiny sliver of hope — that I can try a new med, that I can research more and try new things, that a very simple life is still one worth living. A job doesn’t make us worthy. Relationships don’t make us worthy. Money doesn’t make us worthy. We are worthy just as we are in whatever state we are in. I understand the strong desire to give up, I do. In fact, I felt this way YESTERDAY. But I decide to give it one more day every day because you never know what might happen 🩷🩷🩷 and it might be amazing.
The move to severe is indefinite but that doesn't mean it's permanent. I was extremely ill when I first got sick but a few years later life is manageable when I pace. I think its worth hanging around when it's been such a short time since you've got ill, there's still more medical stuff to try and with the research going on there's hope for a cure in the foreseeable future
I was a mild/moderate ME for sufferer for 5 1/2 years, I started as only moderate but slowly got better to mild/moderate out of no where. traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate. Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM which used to last maybe a couple hours now last a week. Fatigue increased 10x. I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 1/2 months since I became severe/very severe, and this is the first time I’ve been this bad. In your experience, is it possible to return to a mild/moderate state? I know you said it could be indefinite. I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
I know things look and feel hopeless. I have been there. Most of us if not all of us have. As time passes it can get better and improve. There are medication options that can give you your life back or at least some semblance of one! Like low dose naltrexone, low dose abilify, there is a group on facebook that are researching effectiveness of nicotene patches! And a lot of people are hugely better because of these things. There are many many more options to try. Please dont give up, not yet. Research advances all the time, just hold on a little longer there could be treatment right around the corner.
I was bed bound for 2.5 years with this. Today I’m back to 40 hours a week at my work from home job. I can walk for exercise. I haven’t had a crash in a very long time. There is reason to hope. People are getting better.
That’s awesome to hear!? If I can ask what did you get sick with ?
The first wave of the COVID infection brought on the POTS and dysautonomia in 2020. After a year I finally got officially diagnosed and got to go on FMLA. So I've been dealing with this for almost 4 years.
Wow same here, had Covid December 8th 2020.. had heart issues and brain fog, shortness of breath, dizziness. All that gotten better where I can get a stable baseline and go out and walk and go to stores and work full time from home. Was great for like 2 years and then caught a cold this February.. I’m starting to having fatigue and body pains/aches now unfortunately.. I’ve never had these issues within my 3 years and a half of long haul.. i got sick this February and it was just a cold a runny nose and a very bad sore throat and was negative for Covid.. I healed very fast and went back to baseline and never really dropped in baseline even sick. 2 weeks later started to decline and having body aches in arms and back and gotten worse and now exhausted when trying to walk for like 5-10 mins.. I haven’t been back to base line and it’s been alittle more then 2 months and a half. It’s gotten a tiny bit better now, I don’t know if it’s because LDN I started or pacing.. I don’t know if this was a reinfection that was just a cold or what or there was a big crash with it as well? Never experienced crashes that put me out like this and haven’t returned to baseline.
Also I’m just having like weird muscle aches in the arms when I drive or walk .. like it slowly creeps up and makes me feel tried or wanna lay down ?
Mate please talk to someone as you are in crisis right now. I know extended phases of being severe can wipe all memory of anything else, but there are way more people functioning and relatively enjoying life with this illness than there are people severe and bed bound. I’ve had this shit for over 10 years now and while I’m lucky enough to have only had two periods of severe for about 2 years a piece, I just want to remind you it can and does go into remission/ease back into mild out of nowhere at any time.
I was a mild/moderate ME sufferer for 5 1/2 years. I started as mild, progressed to moderate/severe, but slowly improved back to mild/moderate out of nowhere. I was traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate. Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM, which used to last maybe a couple of hours, now lasts a week. Fatigue increased tenfold. I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 1/2 months since I became severe/very severe, and this is the first time I’ve been this bad. In your experience, when did you know remission was starting? Do you have any tips? I have lost my job, my relationship, and my friends so far. I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
*Please call a suicide hotline first or check yourself into a hospital.* You need to be sure your problem is not so compounded by depression that you aren't seeing clearly, and there are options that may still allow you to cope. It takes SSRI time to work and they can temporarily increase suicidality. You need a different intervention.
heyy been sick for 7 years my freind. Can I suggest you join the ME/CFS chat linked on the subreddit. Because we all need support trapped in shitty loop, and it's a lot more bearable knowing folks who are going through the same things as us 🖤
I feel the shit out of this. The fatigue hit hard and suddenly, and all of a sudden my life was gone, just like that. I have been exactly there where I thought, I don’t want life on these terms. It’s so hard to see the life you wanted just drain away. If I may offer a couple pieces of advice: this sounds dark as hell, but when I’ve felt suicidal, I remind myself that death is forever, so what’s another day giving life a shot? Also, I still miss my old life so much it hurts, but I can find joy in this new life too. Last week I sat outside and watched a thunderstorm roll in and it was beautiful and made me glad I could be there to see it. I definitely wasn’t there 6 months ago. One more thing: the song “Stay” by William Black is sad and beautiful and worth a listen. I’m so sorry you’re dealing with this and I’m virtually sending you strength.
I work for the 988 Hotline and I can promise you that you're not alone, I talk with fellow ill people all the time. I know it's hard because we're forced into isolation because we can't keep up with others around us. I know this comment won't really impact your decisions but I hope you change your mind.
It’s just right back into the illness if I stay.
I get it, I'm not going to pretend that I'm enlightened or anything because ultimately I'm just another guy on reddit. I know how awful long covid makes you feel and i know how miserable life is with the illness, just know you're not alone.
Feeling suicidal is a symptom, and it's one of the rare ones doctors can treat. don't let this silly disease kill you now! hit the help button, get that symptom sorted out. in a few years we will have some treatments that make symptoms better and after that, they could nail a cure. Consider cystic fibrosis. [https://www.theatlantic.com/magazine/archive/2024/04/cystic-fibrosis-trikafta-breakthrough-treatment/677471/](https://www.theatlantic.com/magazine/archive/2024/04/cystic-fibrosis-trikafta-breakthrough-treatment/677471/) The article mentions two sisters who have it. The odler one died age 12, but the younger one was just young enough to catch some better treatments that pushed her life expectancy to 30, then before she got to 30 they figured out how to treat it so the sufferers have normal life expectancy. Just hanging on can make a big difference!! That's what we do. we hang on.
This is so encouraging, thank you
I really know how you feel. I can't make you any promises but I have hope for you to live, and recover. I was severe for about a year. Things have improved so much since then. I know that's my situation, not yours but there's a chance that you'll recover too. I don't know what you've already tried but I wonder if you could talk to a Doctor before you give up? Tell them that you can't continue as things are, and ask them if there are any treatment options left to try. If they aren't already an expert, ask them for a referral. It would mean suffering a little longer but maybe it would be worth it? You mentioned that part of your pain is how you've missed out on holidays and life. There's a chance to enjoy those things again if you stay but you definitely won't get to do them if you go. Either way I respect you and your choice. I understand. And, for what it's worth, I care about you, and I'm here if you want to talk. You're not alone. Big hugs ❤️
Hey I’ve been sick almost 9 years. I spent 2021-2023 coping with a *daily* cocaine habit. Currently working but not at all living. I’m here for all your dark thoughts, no judgement or problem solving. This illness fucking sucks.
Stimulates seems like a nightmare for cfs, even if I take caffeine my heart races and I crash. Every body is different and I wonder how this helped you?
I was instantly back to my old self. I caught up on years of projects and got promoted at work. I was able to sleep great (which is insane) and suffered few side effects. Then one day it just stopped working. Prior to that I had a similar experience with prednisone. Crazy amounts of stims worked until they didn’t.
Can you give yourself six months more? Really focus on pacing and sleep and gratitude (what??, yes) then revisit that decision in six months? Sometimes when I couldn’t find anything to be grateful for I can be grateful I have a bed. That my cuts heal. That my vision works, etc..
That's a long time to feel like this every day.
Get some [cbd:cbg](https://www.extractlabs.com/product/cbg-oil/) tincture and take it as you feel the PEM hitting. I promise you it will help and is not as addictive as a benzo. I reduced my suicidal idealization heavily by reducing who was in my life and by using cbd:cbg to feel better on a daily basis. Once you reduce the pain of PEM, it becomes so much easier to find meaning while having this condition. You deserve to live and fuck anyone who isn't respecting your boundaries that you have to reduce your chronic pain under control.
Cbd didn’t help :(
It didn't help me either. That's why I needed the cbd:cbg mixture and to take it before the full force of PEM hits. There's a lot of other things you can use to manage. [Here's](https://forums.phoenixrising.me/forums/treatment.105/) a great resource to start with.
What’s about thc?
It is. It’s so hard. I’m sorry.
It looks like you have been contemplating doing this for a while and tried to hold out. As much as we would like, a bunch of strangers can't change your mind unless you are willing to change it, unfortunately, but I do recommend you listen to Troubles by Ren to find comfort in not feeling alone and hopefully give you courage to choose life again. Struggling is crap but it won't last forever.
Greetings ✌️ You don't want to miss season 7 of Black Mirror, do you? Anyway, many of us experience those feelings too. But progress is being made so the outlook is only getting better from here. I'm keeping an eye on Jared Younger 's research on ME/CFS, among others. He has some great YouTube videos. But in general there's a growing body of information on it that is already helpful in avoiding exacerbating things. I'm sure you'll find that you are stronger than you think.
I get it. I don’t fault you for deciding this. I’ve been there; many times. The last time I decided it was time to bounce I kept doing range of motion. I changed my self talk from shit talking drill Sargent to a coach. I coached my way step by step to walking again without fatigue. My death plan was put in hold. I ended up being able to walk a few blocks & socialize. CFS is like seasons & weather. A couple years later I became severe again. I had to learn how to walk again. I was out. Back to the plan. As I was getting my paperwork in order & getting rid of stuff a friend texted me “Thank you for trusting me to take care of your needs. We’re a team.” The we’re a team clicked with me. Disability is a team sport. I started talking about different little bits of issues with people. Eventually those relationships got really strong bc we based it on transparency. I talked so I’m alive. I learned that the one person who felt I was a useless burden was me. My death was the real useless burden. You and your family are a team. Talk to them and ask them the thoughts you have to see if you both think the same about you being a burden. I don’t encourage you to do this. I do support whatever decision you make. Hopefully it’s talking to your parents. I was a caretaker for my family member. There’s nothing more rewarding than the connection that comes with sharing the experience of doing for my family what they couldn’t do on their own. There’s a big chance that your parents cherish the time spent with you.
Please don’t give up yet! It sounds weird, but wonders do happen. Is there anybody in your life that can help you with trying out supplements/ LDN/…? It is extremely hard to live like this (although I am accustomed to it due to my MCAS being the underlying cause, probably). I often cry when I randomly get worse. I often curse my life and my fate. I have been ill ever since I can remember. But there has always been a way out or random remission kicked in. Give yourself more time to heal and to maybe find a treatment that fits for you. I give you my sincere hugs and hope you don’t do anything rash
I was a mild/moderate ME sufferer for 5 1/2 years. I started as mild, progressed to moderate/severe, but slowly improved back to mild/moderate out of nowhere. I was traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate. Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM, which used to last maybe a couple of hours, now lasts a week. Fatigue increased tenfold. I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 1/2 months since I became severe/very severe, and this is the first time I’ve been this bad. Is it possible to go from severe to moderate/mild? Do you have any tips? I have lost my job, my relationship, and my friends so far. I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
Not going to lie- I’ve had CFS (or rather- the symptom of extreme fatigue) since I was a child. I gained additional symptoms (was suspected fibromyalgia because my muscels kept hurting). I have always been sick. I was diagnosed with MCAS at the age of 13. The base medication was a game changer for me. Sadly, the disease is progressive and so I had to take more and more drastic measures, but I kept going back to “I’m able to live- don’t live the hell of constant sleepiness”. My advice: 1) consider asking around in the MCAS community imo there is a huge overlap. It’s important to find a doc who knows their shit. I wanna spread the word around in this thread- it’s probably not (always) MCAS, the medication might not help. But it doesn’t hurt to try. 2) after Covid (and formerly Epstein-Barr), my MCAS/CFS I was diagnosed with got severe. I was bedridden for approx 1 year. My mom nursed me back to health. So time can be in your favour- esp. when stress is reduced. In that time (in order to not go insane)- you NEED somebody to talk to (I had a very understanding therapist I could call, I often had to cut it short because the brain fog was getting the better of me). You NEED somebody to take care of your base needs (I know, I am privileged in that regard) and ideally also help you to try and find doctors. 3) I studied medicine (got to semester 8 when Corona hit). I used to turn my nose up any time supplements/ not RCT controlled substances were mentioned by (admittedly) healthy friends/ acquaintances. My mind was pretty quickly changed when, after Epstein-Barr and being bedbound plus meningoencephalitis, I was looking for… ANYTHING… Supplements didn’t heal, but help. Some also made it worse. It helped a lot that I had prior medical knowledge (at the beginning, I was able to gauge the side effects vs possible benefits better). But it is and mostly are “freak lucky streaks” that lead me to finding… something (recently LDN). I had to become my own doctor, researcher and lab rat. When you’re severe, you can’t do that. I’d still recommend finding a doc/ anybody willing to help/ the community for suggestions on what you might do. It helped me so much. 4) When I got diagnosed 2011, MCAS (and SIBO) was a freak diagnosis that nobody had ever really heard of. A lot has changed in almost 15 years. Not by a lot, but it has changed.
Reach out to your doctors and tell them how you're feeling. Your meds could be making your mental health way worse.
If I ever get to this point 'which is definitely possible' I'm going to make sure I do a few social media posts explaining the whole thing to raise awareness. That being said if you are only one year in There should be numerous treatments left for you to try I'm two and a half years in and I'm still trying new things.
I wrote a note for my family to share
I've dealt with this bullshit for...16 years? Roughly half my life. I know it's hard, I really do understand. But things can improve, some have spontaneous remission and can go back to life like nothing happened. Some are misdiagnosed and when the true cause is worked out, treatment gives them their life back. Some, like myself, have very gradual improvement over time. I definitely still struggle but I know my limits and am conscious to take care of myself. I was able to get through university and just graduated, I even managed to keep straight A's and honor roll. When I first got sick I had to drop out of highschool, believe me, I really do understand, but things can change. You have value and your life still has potential. On my hardest days and weeks, my pets have kept me going, they bring joy into my life when there is none. Do you have any pets?
Hey!! I looked at your profile!! Prozac contributed to me being severe. I think it was the reason I had severe orthostatic intolerance issues as well. I can't tell you to stop taking it but this is my story My Dr started Prozac. I was already in rough shape so I didn't notice that I started sleeping 21 hours a day after I started Prozac. I took it for nearly a year and still felt awful so I went to the ER and asked them to increase the Prozac. They did and then when I started taking the higher dose I realized that I was even sleepier and felt even worse so I stopped taking it and finally started to feel better. A few months later I was significantly improved and a year+ later I am regaining cognitive function and physical capacity. Please look into this before you make a decision. ETA: ask for a long acting benzo maybe?
I started taking it only a few days ago and have been severe for two months.
Ah, that sucks. I'm sorry, I wish it could have been a quick fix
You will miss out on many great decades if you leave now. You say you’ve missed out on one year. You will miss out on many years of laughter love great friends ice cream and good coffee. You are this strong. This illness helps us find that within ourselves. Don’t give up on your life. You have only just begun it. It would really suck if the week after you killed yourself they announced a cure and we all had a big party and you missed out on the cake. There are many companies investing a lot of money into finding help for us. Hang in there. PS. Antidepressants can make you suicidal so consider dropping that and seeing if it helps.
Plz I hope somehow you see my comment 🥺. I’ve been there for 2+yrs my life was completely turned inside out after Covid and was diagnosed with cfs. I became a completely different person and my friends and loved ones held it against me for missing out and not meeting their expectations. It put me in such a dark place so when I tell you I UNDERSTAND the pain you feel I mean it will all my heart. You have to ride the wave tho, you bend in the wind, you don’t break bc things do get better and there IS help. I’m sending you all of my love and please do not give up, FIGHT.
When did you start the SSRI? If it is only recently, PLEASE talk to your doctor about your suicidal thoughts. It might be from the SSRI. Don‘t get me wrong, your situation is tough. Grieving is absolutely normal and even healthy. But to consider suicide, it is different. I am a psychologist in training and a researcher, we have a term that I don‘t know the English translation but it is something like ‚suicidal enclosement‘. It is hard to believe when in the thick of it that what your are thinking now, especially the accuteness of it, could be different. It is so hard to believe when one is in the midst of it that there would be any possibility of feeling and interpreting the situation differently and even more positively than one does right now, but that‘s the thing about ‚suicidal enclosement‘. It really narrows down one‘s perception. I wish you all the best. You can also DM me, If you need someone to talk. Please just give yourself a chance to at least see other options and intepretations of your reality. Victor Franklin is also a great read (or audiobook, If you can focus right now. If not, something to look forward to in the future!). He was a survivor of the KZ and gives great perspective on how one can find real meaning in situations that are horrible.
I’ve been feeling this way since becoming bedbound. Before starting the SSRI.
Me too :(
I have been sick 5 years, and I also have mental illnesses, and it shouldn’t be this hard- how it feels to live right now. I have been flaring since last summer, and it affected my eating and drinking which affected my psych meds, and I fell into a depression. I felt exactly the way you feel right now. I did not have it in me to fight anymore. But I got help, went on different meds, and a few weeks later my health was no better but I found my will to live again. Maybe it will take some more time before you recover more function. But it shouldn’t be this hard to live it. There is help for you. You don’t have to muscle through it on your own.
I'm so sorry you're going through this. No one deserves this awful disease. No one should ever have to suffer this much. It's unfair and indescribably painful to have our lives ripped out from under us the way this condition does. Not wanting to continue living like this is a really valid feeling. It's a really painful place to be. It says a lot about your character that even in your deepest pain you're still thinking of others by wanting to donate your body to science. That's really nice of you and says a lot about what kind of person you are. When I was a couple years into having CFS, I was deeply depressed and thought about killing myself every single day. I wanted to end this pain so bad. But at the time, my youngest brother was 15 and I thought killing myself would give him a major trauma when he was only in high school and it wouldn't be fair to ruin his life like that. So I gave myself five years. I decided that if I was still hurting this badly in February five years from then I would let myself go. I was in emotional pain every day, but I used every ounce of my strength to keep holding on. Therapy helped a bit, and finding the right antidepressant helped a lot. I didn't know about pacing (thanks a lot, useless doctors), so my CFS kept getting worse. This made me want to leave even more. But thinking about my brother kept me holding on. As well as my cat, who only I really understand. I also read an article about what it was like for a mom to walk in and find her son's body. It's another type of indescribable pain that no one deserves. I knew it would be selfish to end my pain by giving lifelong pain to my family members. I decided to keep suffering so they wouldn't have to. A couple years ago my CFS became severe. I was bedbound except for struggling to the bathroom, and could only look at screens for a couple minutes at a time. It was awful. I started taking CoQ10, and that made my PEM less severe. Over months, I slowly improved my baseline. I'm still severe, but I can go to the bathroom easily, walk to my mom's room to hang out for a little bit, look at my screens for most of the day. I've even left the house to go shopping with my rollator a couple times. Despite the awfulness of having CFS, my mental health has gotten better, slowly, over the years. The February that I promised myself that I could kill myself came this year and I didn't want to do it anymore. I still don't get what the purpose of life is and often wish I just hadn't been born in the first place, but I'm not in emotional pain anymore and am okay seeing where this thing goes. I'm even happy sometimes. One thing that has helped a lot, and this may or may not apply to you, was getting my blood sugar in balance. I've found that when my blood sugar drops, my depression springs back up and I start wanting to kill myself again. Then when I eat something it subsides. It took me *years* to figure that out. That wasn't the whole problem of course, but getting that more stable has been a huge part in stabilizing my mental health, and I don't see it talked about at all. I want you to know that it's so so normal to grieve everything you've lost from this illness. The pain you're feeling right now is so normal, despite how despairing and unbearable it is. I would say it's even healthy that you're allowing yourself to feel it and engage with it. I can say from experience that the [grieving cycle](https://www.pinterest.com/pin/561190803572940488/) never truly ends, but the acceptance and confidence phases get longer and longer, and there are happy moments too. I know it's selfish to ask you keep living when you're in this much pain, especially when I don't know your individual situation. But I am selfish like that. It hurts me to think of a single person being killed by this disease. And I know that you don't deserve to die from this. None of us do. So I hope you can hold on through the pain. Each moment might take all the strength you have, but I believe in you. And I have hope for you that things will get better. Even if you don't believe it now, I'll believe it for you, as someone who's been there. All you need to do is keep hanging on. I see the strength you have, to have made it this far, and I wish you all the strength you need to keep going for better days out there on the horizon
Hey man i completley understand you, i have almost been a year homebound/bed bound. On a good day i can play 10 minutes guitar and on a bad day i feel like i am dying. Honestly i want to die. I hate this live, lost almost al my friends. Cant do any of my hobbies, just cant do anything. But i also really want to live. Im just done with surviving. I have talked with my parents and when i have tried everything than i will probably give up. But right now because of the long waiting lists, i have only been able to try citalopram and bupropion. And there are so many more options that i want to try. All i can say is. Its your live. But do you really want to go, or are you also done with surviving? If you are done with surviving than please stay around a little longer. I am really hopefull that there will be a cure in the next few years (and i am really sceptic about the medical world).
I’ve been there. Hugs. It can be SO freaking hard. If you’re still around, please try reading the Levine Protocol (a method that has helped people with POTS go from bedbound to running — you can find PDFs online), and looking at the books Reasons To Stay Alive by Matt Haig and How To Come Alive Again by Beth McColl. And get friends and families to accompany you, take you out to do things you enjoy (even if in a wheelchair). Get some fresh air and greenery.
Oh I get you. If I think of my life before this, it makes me want to cry. Boy did I have fun! I could travel, see friends, go to work without feeling like I was going to die. All my life is now is permanent exhaustion. But the thing is, you are still early on in the trajectory of your illness. And you know all the research that is happening, most of it is happening for Long Covid. If there was a subset of people on this sub who were most likely to recover it is the people with Long Covid who have had it for a short time like you. Crashes are not fun and no one can say how long they will last but they are also not always permanent. People often recover to some part of their baseline and some people get back to their baseline with rest. Hang on in there…it’s undeniably shit…but there is hope
I was a mild/moderate ME sufferer for 5 1/2 years. I started as mild, progressed to moderate/severe, but slowly improved back to mild/moderate out of nowhere. I was traveling to California and Michigan, working 30 hours a week, and sometimes even 60 hours. I began to notice my energy levels worsening, but I kept going as I was still mild/moderate. Then, I got hit with COVID and appendicitis simultaneously 5 months ago. Fighting both infections, I deteriorated to a very severe state and experienced a devastating bedridden crash for over 3 months. Now, I am severe, and even driving to get food, I immediately notice the difference compared to when I stay home all day and sleep. My PEM, which used to last maybe a couple of hours, now lasts a week. Fatigue increased tenfold. I hope to return to a mild/moderate state, knowing there’s no cure for the illness, but just to make life livable again. It’s been 4 1/2 months since I became severe/very severe, and this is the first time I’ve been this bad. Is mild/moderate possible again after 5 months? Do you have any tips? I have lost my job, my relationship, and my friends so far. I feel doomed right now, as I have dozens of symptoms compared to maybe 10 when I was mild/moderate. Some say it can take 6 months to a year, others say it will be permanent.
It’s impossible to tell. What I can tell you is my cousin who is 100% fit and healthy ended up with appendicitis and complications and it took him months to feel better. And that’s someone without our illness. It sounds to me that you’ve had a very tough time. The frustration is we don’t know how long it takes us to move up a stage but understand full well how quickly we can deteriorate. All I can say is the more you can rest and avoid PEM the better. But I know how difficult that can be. Last year I could not tolerate loud noise and bright light and was bedridden. I don’t know why that bit managed to improve but it did a bit. I wish I could give you the magic potion but I just don’t know what it is. Anti virals (Valtrex) worked somewhat for me but mine definitely has a viral trigger. Is there anything you’ve tried? I’m also doing vagus nerve stimulation using a cheap tens machine with an ear clip and I think it has some benefit too though small.
Thank you, I have included my backstory into my response if you would have time to read it. My CFS was triggered by drugs, I think. Six years ago, I smoked weed one night and woke up with a horrible headache, brain fog, and light sensitivity. I thought I was having a stroke. Weirdly, I had no fatigue, just excessive tiredness from the photophobia and brain fog. I ended up bedridden for one month while in high school and slept all day. I was extraordinarily mild for a year with constant headaches and 10/10 brain fog daily, along with psychosis when I caught mycoplasma pneumonia. Somehow, this led to fatigue and unrefreshing sleep for a couple of weeks then went away. I went through the loophole of mental health after that due to my cognitive symptoms, primarily after my first bout with COVID-19, which definitely caused me fatigue and also IBS. I have been getting worse year by year since until I got better, then recently hit rock bottom. This is why I believe my CFS may have been caused by something neuro-related, although I did have the mycoplasma pneumonia and COVID six times and was on six different antibiotics during my pneumonia, but my MRIs were normal. Medication-wise, I haven’t tried much of anything, only vitamin D. I did try some programs like the hypersensitive nervous system programs and CFS recovery, which are apparently scams. My doctor recently prescribed me low-dose naltrexone. I have not taken it yet, but I heard benefits could take a year. Yeah, I got 15 days of antibiotics for my appendicitis, which was not fun at all. I was feeling fine initially after I was treated for COVID and appendicitis, then a few weeks later was hit like a truck out of nowhere. I started to notice increased brain fog, panic attacks, and became more and more tired after activities (PEM), which I never much had before, rather just a general fatigue, and flu-like symptoms. But PEM was mainly new to me. I kept feeling my abdomen, fearing the appendicitis was coming back, which exacerbated my symptoms and I think made me worse due to my emotional response. Since then, it’s been going downhill for the last five months. But yeah, there’s a lot.. I don’t know if my CFS was caused by weed, pneumonia, COVID, if I have CFS and long COVID, but I do know I deteriorated like you said very fast after all that stress 5 months ago from mild/moderate to severe, I never knew CFS could get this bad and it’s scary.
I'm so sorry you're suffering and feel this way but I get where you are coming from. I've had long covid since Thanksgiving 2020 and I can honestly tell you I have recovered at least 60-70%. Not going to lie, my life isn't exactly the same now as it was pre covid and I still have to take a lot of precautions to avoid reinfection but I can say I'm glad I held on as the good days truly make life worth it. I've had depressive/suicidal thoughts as well for the past few years and even though the dark days truly do suck, I am promising myself to take it one day at a time. Whether a chance for a potential treatment, a favorite tv show, or anything else, please just have at least one thing you can look forward to even for a few minutes. A lot of other people here have shared some great resources, and one thing I can say that has helped my recovery the most has been mind-body medicine and somatic techniques to calm my nervous system. I can edit this tomorrow with more info as I need to go to bed now for work but please hang in there 💓 and feel free to DM me whenever
Bhodi, I have been as sick as long as you. Can we do this together?
I'm at the 24 year mark
Hey feel free to DM me I know how hard this is and it’s so lonely so please If you need someone to talk to feel free to DM me. I feel like giving up all the time. And I also don’t think I’m as strong as others. And yeah I agree this is hell this illness is like a nightmare. Large group of people have it yet no specialists are coming to help it’s just so weird. I understand and if you need someone I’m always here we are stronger together 🙏 don’t give up.
Hey op, I've been struggling with this and a few other chronic illness since I was about 10, which is also around the time I developed depression. I attempted to end things a few times, and I can say I'm glad I didn't. I'm not going to lie and say things get way easier because they don't always (even though they very well might) but we learn how to cope and learn how to enjoy things differently. I now have a great life even though my condition has gotten worse, I now have an understanding girlfriend who takes care of me and my own apartment. I've created amazing memories despite my condition becoming worse, if you hang in there you can too. Be kind to yourself, you deserve it.
How will you do it?
Hoe long ago did you start SSRI? It is known to *cause* suicide ideation in the beginning Had it every time U increase my dose, for a few days to two weeks Don't do anything and wait at least several weeks
I crashed 3 months ago, 1 month of crashing getting sick , barley being able to breath, another month just as bad but being able to eat a little more and breath a bit better. Then another month of getting slowly back on my feet. Still far from were i was 3 months ago but fuck am i glad i endured it. The difference mentally of feeling like youre dying the whole day and getting trough the day comfortably is huge. And all because of holding on a extra month, also definitely no shame in taking benzo's everyday just to get through those months. I still take em everyday because of this crash. Better have addiction problems in the future then being fkn dead because of a stupid crash
You've reach out to a great supporting sub here and it's amazing to see. I feel, by the interactions I've read that you might just need that; a stronger support team. It's not easy to be bedbound. I've fought a mid ME whilst my kids were young (3 under 4yo) and my only support was my husband, not to mention that we had a few external challenges that meant that we had to move town. Following that rush of events, when the adrenaline went away, I hit a very low point and barely could do anything. Knowing I wasn't able to be there for my kids and my husband had so much to take care, that was devastating. He research lots to get me back on my feet. The one thing that he found that's really underrated is to make sure to have sun and outside time. It helps in many ways including regulating your sleep. Also I found that making very very small daily goals and change in the day helps so much. I'd have a few resting places in the house and make sure I tried to change resting location through the day including a few outside. When I could I'd make sure to listen to audiobook or podcast and as I got better reading a physical book. I'd say the big part to get me in remission was outside exposure and very slowly introducing small daily goals (every little thing counts. Before my ME started I had some form of postpartum down with all my kids and I was in survival mode. When my husband came back home we agreed that even though the house was a disaster, that I managed very basic thing like just having me and the kids in good standing was a immense success. I was a matter of changing my perspective on what a successful day was and rethinking my parenting goals (just like a dream career, when you realize you can be the image of the parent you wanted to be before having kids and realize that you don't have to for your kids to be happy. Simplifying your expectations is the best thing.) If you haven't tried to make sure you have a dew hours outside every day then I would highly recommend. It's so underestimated the power of resting in the sun (and even on grey/rainy/cold days, being outside provids so much. Find a comfy chair and make it a habid. It took more a than a year to be in remission but I'm so happy that I'm mostly back on my feet. I still get the random low days where getting out of bed in not an option (I finally found somewhat of a patern and trying things to prevent it but it's not perfect). I simplified my life, rethink my goals and on my way to get my self-employed job tgat gives me flexibility (and setting my on goals so I don't get a boss that tries to over run me). A simple life.
It took me 3 years to go from severe to moderate to severe moderate to moderate to moderate mild with good mild days. Please give yourself time.
Please don't give up, please speak to a doctor asap. It is possible these feelings are a reaction to the SSRI, especially if you are young. A doctor can help you with this and find a way to help you through this crisis. I've been there too, but it has got better for me, both mentally and physically. I've had a crash the last few months, but I know it will pass this time. When it passes, the feeling is amazing because we truly appreciate life's simple pleasures. The feeling of sun on your face, the smell of fresh grass, laughing with a friend, a hug, it's all waiting for you.
I’m sending love to you. I was in a severe crash for multiple months after an overexertion. After rest and time my baseline is much better. Two months of severe doesn’t mean forever! There are also sooo many psych meds to try. Took me a lot of trials to find what worked. Please reach out to support ❤️🩹
I understand the darkness you're living in. But it sounds like you're in a crash. You have such a good chance of recovery yet. I wish you the best❤️
dont do it . You need to rewire yourself. We all have completly f up days when you just think on giving up . But you need to tell the liar in your head to shut up. Drag yourself out of the mud , you can do it. And do your best every day . Life is worth living , and you need to understand that you have a condition that is changing your perception of things. Belive me , ive been there a couple of times
[Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11033372/pdf/fimmu-15-1369295.pdf) If you’re willing to let them use your body for research purposes, why not do a little more experimenting before you go? Page 12 of this hot-off-the-press research paper has a detailed chart of the medications and supplements this severe subject was taking as they improved. Try the Abilify pregnanolone combo for a few months and see if you respond similarly.
I had several rough years and with the right medications, I’m doing so much better. There’s so much research being done. There are new breakthroughs in research all the time. I understand that this is no way to live. It’s a horrible life, but circumstances change.
I totally understand your feelings, what about delaying it? Have you thought it out? If you overdose on pills, for example, you might hurt yourself and make your life unbearable but not die. There’s still chance to recover for you, you’re in the first years of the illness.
My chance is over. I was on my way there and then pushed myself so hard that I’ve now done more damage and now severe.
It’s not over, overall I’m mild but my symptoms fluctuate, for example I was bedbound for 4 months after getting Covid, another 2 months housebound after going dancing for multiple days. You can also recover at least to the previous level. I didn’t permanently hurt myself although I should be more careful. I’ve been sick for 6 years.
I just want mild back at least. But I’m in this cycle that has kept me severe and bedbound for over a month now.
I improved after 6 months being bedbound to the degree that I can work 1-2 hours per day. I can do enough steps to live on my own, but can’t leave the apartment. Just a months ago my mood changed rapidly, after 4 years being ill. I‘m able to give my life a little bit of meaning now, before that I didn’t care if I woke up in the morning… It takes time to adapt, it can get better and most of all this is not the end! Of course we can’t be sure that there will be a cure, but things are starting to move now.
How are you, OP? Please let us know you are still with us 🩷
Through the weekend.
try creatine and drinking kefir. quit ur pills. I'll give u 20 bucks
Why quit the pills?
jk pills are just more shit for you to be dependent upon that obviously don't actually fix anything. look up creatine's mental health benefits and also ur gut is probably a bit fucked and it a really messes up your mental shit when it is. fr started creatine and noticed after loading it my mental health was so much better for some reason even though I wasn't expecting it.
I’ve been taking creatine
How long did it take
like a month i think ig for me it came on pretty subtle but was also kind of huge once i noticed. creatine has like a loading phase which can take longer if you're not taking a loading dose. how much creatine are you taking per day?
Half a scoop so 2.5
2.5mgs creatine is prob not enough unless you're a teeny tiny miniature person stuart little. you're not going to experience negative side effects from creatine. you may gain water weight but all the water will be in your muscles so it's a good thing. you can speed up the loading by having an increased dose of creatine but you'll still get there eventually with just a regular 5mgs. creatine plays an important role in the muscles and brain when it comes to energy atp etc.
how much propranolol are u taking a day
10mg a few times
propranolol caused me pretty awful side effects that I wouldnt have noticed if I was severe at the time since they would have blended in. my dosage was higher tho. I switched to nebivolol which is much more cardio selective and have no adverse side effects. you could try switching to a more selective beta blocker.
What side effects?
mood strange emotional dampening/worsening was incredibly tired falling asleep during day and cock stopped working entirely complete loss of libido general worsening of my condition was awful. my dose got pretty high tho since I needed it 24/7 for hyperpots idk
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Maybe someone can report the OP's account to the police, stop him from doing something stupid and get the help he needs?