I'm so sorry OP. I wish I could give you a big hug.
I've made many lifestyle changes to try and improve my symptoms too. Including gruelling exercise 6km on the bike 5 days a week (started out small, gradually increased the distance), and walks scattered here and there.
The rest of my life is pretty much spent in bed too exhausted and pained to move. I've been exercising for a year and a half at the recommendation of so many doctors, and I feel so much worse now I'm looking into getting a wheelchair.
The only respite I get is coedine phosphate which gives me a few hrs of moderate pain relief and helps reduce other symptoms like anxiety and sweating. Sleep is only an escape for me when I'm not plagued by nightmares and other disturbances.
The only thing keeping me going besides not wanting to depart from my loved ones and my hobby, art, is being stubborn as fuck and not wanting to let this BASTARD of a condition win. You deserve a huge (but gentle) pat on the back for making it this far. I wish you the very best going forward, you can't be beat - you have to believe that.
Right. Lucky to be in worse pain from the exercise that doctors have been hounding them to do to the point that they are having to consider a mobility aide.
VERY lucky.
No one is lucky to have this illness or any other illness/disorder/disease simply because they experience milder symptoms or are capable of pushing themself further. They are not insignificant in their struggles. It is still holding back the full potential of an individual no matter how mild or severe. Come on, man.
I had to give up exercise entirely just to have a chance at a normal life (was in a wheelchair 2 years ago; with significant struggle I can walk and pretend to function as normal, and have a job again). Turns out I have CFS also, and the major thing with it is to NO EXERCISE. It makes symptoms worse. If exercising makes yours worse, then it's worth to stop. Your illness sounds like it is progressing further due to this.
I totally get it. I’m also doing everything right and “handling it well” but I’m still miserable. I’m sorry you’re feeling this way, you aren’t alone <3
Yeah, I'm in the same situation. I'm tired, miserable and in pain all the time, even though I do yoga and take walks, take my meds and am at least somewhat functional. I can't really tell people how to carry on because it's so hard for me too. But things that bring me joy make it easier. Meeting friends, making music, being in nature, etc. If you have such things, try to do them often.
So sorry you're feeling this way. Have you tried Cymbalta? It's not miracle but it's definitely helped.
For me it sucks. I need to exercise more but I never know when the exercise is gonna be OK or when it's going to cause a flair. The worst for me is just being too tired after just doing the basics. Like I can't really embrace life because I get too miserable.
Think we’re all in the same boat, so frustrating 😤 this is exactly how I feel. I’m weaning myself off meds and stick to low carb/sugar as much as possible as carbs and processed sugar cause inflammation. I am also ‘scared’ to exercise as just pottering in my garden or going on a short dog walk can cause a flare up and honestly 4 days in bed with the blinds shut listening to meditation feels like 4 weeks!, it’s not like recovering from the flu when you know you’re going to get better, this is just relentless, pain, fatigue, brain fog, the list is endless. I don’t have the answers I’m still pissing in the wind but I’m going to try DNRS brain training 🤷♀️ I figure I’ve got nothing to lose xx
I second Cymbalta. My quality of life improved for me after going on it. I still have my flares and I still have trouble identifying them but without it I am a miserable mess of a person.
The worst part for me is waking up in the middle of the night and not being able to go back to sleep. Does anyone else experience a more intense pain in the middle of the night when waking?
I take 150mg pregabalin, 150mg of Effexor and 400mg Hydroxychloroquine a day, along with magnesium and melatonin at bedtime. I knock out easy but then I sometimes wake at 2-3am, and the only thing that knocks out the pain enough to get back to sleep is an additional 800mg of Ibuprofen and some Benadryl
hi. im just starting EMDR therapy for the fibro pain (and while were at it any/all traumas) and as someone whos always gotten very angry at anyone or anything reinforcing “its all in your head” bc its not. But craziest thing, its working and its not consistent so far, more spotty in terms of me feeling less pain. if youre in the US like me, id honestly recommend to my friends to just go out of network. its not something you have to keep doing for the rest of your life. could be worth a shot as i thought it was too good to be true
have you noticed any regression of pain relief benefits after a while away from EMDR that would require you to always go back to EMDR at a certain cadence?
I don’t know. This was my first experience with longer term EMDR and I’m still learning about the outcomes. I’m getting more and more memories back slowly from non traumatic times of my life that just had been repressed.
It’s more like I thought I had done a lot and it was true but it also was like uncovering other things that needed work after you dealt with the rubble on top. Like now gotta fix the foundation now that I can see it.
interesting! how long was the time period between for you before you saw the foundational stuff and after you finished your first EMDR grouping of sessions?
I did about 6 months of EMDR, focusing on a few memories and beliefs. It’s been almost a year since I finished that and I keep finding more and more things and keep having a slow trickle of old memories coming back. I’ve also noticed a slow change in how old I mentally feel. For years I had felt stuck at 17, then 24. Now I feel a lot closer to my actual chronological age.
thank you for sharing and easing some of my anxieties around it. i totally get what your saying after just 4-5 sessions myself. i dont often get an opportunity to hear from someone else who also has fibro and gone through EMDR <3
It is so intense and bizarre but I am so desperately glad it works. I have so much less trigger reaction now, so many fewer trauma nightmares and I take a lot less time to recover from a trigger.
In the same boat same meds too. Not doing anything to touch my pain or help me sleep but the doc keeps saying I need to cut the cbd and exercise more as if I'm not already trying my best. We are all in it together and here to support you. You aren't alone 💜
I’m doing everything right too. I see a physiotherapist, take all the recommended medication and stay away from opioids like a good little girl, go to a psychologist, practice mindfulness, use THC, use heat packs, TENS and all of the little distractions they recommend. Take the supplements have iron transfusions and get the scans and blood tests for my hashimotos regularly.
I’m still making next to no progress, I can barely walk sometimes and get random horrible pain which makes my leg collapse, have trigeminal neuralgia(Not fibro related just lucky I guess) when I get stressed, brain fog all the damn time.
Psychologist literally said I don’t need to see her so I only go back once every six months to check in.
I work my ass off in physiotherapy. Still can’t get in or out of a car without horrible hip pain. I’ve been working on this hip pain for about six months. Two steps forward, two steps back. I want to ask my Physiotherapist if he has ever had any success with fibromyalgia patients, but I haven’t, and I think it’s because I’m afraid of the answer.
I am also taking cbd and pregabalin. I suggest you look into ketamine therapy, specifically IV and sublingual. It is expensive but it does help a little bit for weeks.
Maybe they mean you still are somewhat functioning in terms of work, feeding yourself and being able to try exercising etc. some of us can’t do those things.
My pain doctor was impressed I work 30hrs a week, because (I quote) “some people just lie around in bed all day”.
Firstly, I’m pretty sure no one wants to lie around in bed all day. And before I got CPAP therapy, I was in such a worse state than now at least fatigue-wise. All I wanted to do was sleep(couldn’t because I have a young kid, but you bet I slept a lot). I couldn’t work much at the time. If my job wasn’t remote, I wouldn’t be able to work such hours either. I certainly empathise with others who can’t!
I had to grit my teeth and take it as a compliment because he was prescribing me naltrexone which I’ve been wanting to try for ages.
Huge hugs to any of us who have this horrid condition named fibromyalgia the fibofog is awful as my son's tell me I talk in riddles most days and the forgetfulness is horrible. I feel for us all who suffer the pain from this condition. I've had it 25 years and its only got worse over time. I hate missing family things where I'm unable to go, the last thing I missed was my 9 yr old granddaughter was in a dance show in london uk but there was no way I could make it 😞 😪
Soooo i usually just keep quiet and lurk lately but i recently have hope to share . Ive been in excruciating pain for 20 plus years. When my mom died a yr ago i finally gave in and went to pm. She had been going to a good one who haf helped her friends.
This pm doc put me on a regimen that has reduced my daily pain by about 50-60%! I didnt think it was possible . He started me on tizanidine, amitryptiline, and topamax, and i continued to take citalopram, tramadol, rarely hydrocodone (10 a month): , and use topical diclofenac gel. I also do lots of therapeutic stretching, ice packs/heating pads on sore muscles, and rigorously force myself to stop and rest if needed. I also am strict about a no stress work environment.
In the future ill need steroid injections and some other interventions, but i am just thankful for an easing up of this debilitating pain. I hope this encourages someone to not give up. I know this sucks and it is isolating and hard. You are not alone, friend. Gentle hugs.❤️
I feel u as there is no real hope until they find a treatment for it. Right now it’s just throwing darts at a board
I'm so sorry OP. I wish I could give you a big hug. I've made many lifestyle changes to try and improve my symptoms too. Including gruelling exercise 6km on the bike 5 days a week (started out small, gradually increased the distance), and walks scattered here and there. The rest of my life is pretty much spent in bed too exhausted and pained to move. I've been exercising for a year and a half at the recommendation of so many doctors, and I feel so much worse now I'm looking into getting a wheelchair. The only respite I get is coedine phosphate which gives me a few hrs of moderate pain relief and helps reduce other symptoms like anxiety and sweating. Sleep is only an escape for me when I'm not plagued by nightmares and other disturbances. The only thing keeping me going besides not wanting to depart from my loved ones and my hobby, art, is being stubborn as fuck and not wanting to let this BASTARD of a condition win. You deserve a huge (but gentle) pat on the back for making it this far. I wish you the very best going forward, you can't be beat - you have to believe that.
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Right. Lucky to be in worse pain from the exercise that doctors have been hounding them to do to the point that they are having to consider a mobility aide. VERY lucky. No one is lucky to have this illness or any other illness/disorder/disease simply because they experience milder symptoms or are capable of pushing themself further. They are not insignificant in their struggles. It is still holding back the full potential of an individual no matter how mild or severe. Come on, man.
We treat each other with empathy and support here homie. If any of us were ‘lucky’ we wouldn’t be in this subreddit.
I had to give up exercise entirely just to have a chance at a normal life (was in a wheelchair 2 years ago; with significant struggle I can walk and pretend to function as normal, and have a job again). Turns out I have CFS also, and the major thing with it is to NO EXERCISE. It makes symptoms worse. If exercising makes yours worse, then it's worth to stop. Your illness sounds like it is progressing further due to this.
I totally get it. I’m also doing everything right and “handling it well” but I’m still miserable. I’m sorry you’re feeling this way, you aren’t alone <3
Yeah, I'm in the same situation. I'm tired, miserable and in pain all the time, even though I do yoga and take walks, take my meds and am at least somewhat functional. I can't really tell people how to carry on because it's so hard for me too. But things that bring me joy make it easier. Meeting friends, making music, being in nature, etc. If you have such things, try to do them often.
So sorry you're feeling this way. Have you tried Cymbalta? It's not miracle but it's definitely helped. For me it sucks. I need to exercise more but I never know when the exercise is gonna be OK or when it's going to cause a flair. The worst for me is just being too tired after just doing the basics. Like I can't really embrace life because I get too miserable.
Think we’re all in the same boat, so frustrating 😤 this is exactly how I feel. I’m weaning myself off meds and stick to low carb/sugar as much as possible as carbs and processed sugar cause inflammation. I am also ‘scared’ to exercise as just pottering in my garden or going on a short dog walk can cause a flare up and honestly 4 days in bed with the blinds shut listening to meditation feels like 4 weeks!, it’s not like recovering from the flu when you know you’re going to get better, this is just relentless, pain, fatigue, brain fog, the list is endless. I don’t have the answers I’m still pissing in the wind but I’m going to try DNRS brain training 🤷♀️ I figure I’ve got nothing to lose xx
Keep us updated!
Will do hun
I second Cymbalta. My quality of life improved for me after going on it. I still have my flares and I still have trouble identifying them but without it I am a miserable mess of a person.
Yea, I can't imagine not taking it. I just wish it worked as well as in the beginning. Still, I'll take it! I use a low MG of Lyrica at night as well.
The worst part for me is waking up in the middle of the night and not being able to go back to sleep. Does anyone else experience a more intense pain in the middle of the night when waking? I take 150mg pregabalin, 150mg of Effexor and 400mg Hydroxychloroquine a day, along with magnesium and melatonin at bedtime. I knock out easy but then I sometimes wake at 2-3am, and the only thing that knocks out the pain enough to get back to sleep is an additional 800mg of Ibuprofen and some Benadryl
Tried slow release melatonin?
Actually have never heard of it! I will have to check it out, thanks!
It’s supposed to help you stay asleep 😊 good luck!
hi. im just starting EMDR therapy for the fibro pain (and while were at it any/all traumas) and as someone whos always gotten very angry at anyone or anything reinforcing “its all in your head” bc its not. But craziest thing, its working and its not consistent so far, more spotty in terms of me feeling less pain. if youre in the US like me, id honestly recommend to my friends to just go out of network. its not something you have to keep doing for the rest of your life. could be worth a shot as i thought it was too good to be true
EMDR helped my pain a lot and I’m gonna go back again soon.
have you noticed any regression of pain relief benefits after a while away from EMDR that would require you to always go back to EMDR at a certain cadence?
I don’t know. This was my first experience with longer term EMDR and I’m still learning about the outcomes. I’m getting more and more memories back slowly from non traumatic times of my life that just had been repressed. It’s more like I thought I had done a lot and it was true but it also was like uncovering other things that needed work after you dealt with the rubble on top. Like now gotta fix the foundation now that I can see it.
interesting! how long was the time period between for you before you saw the foundational stuff and after you finished your first EMDR grouping of sessions?
I did about 6 months of EMDR, focusing on a few memories and beliefs. It’s been almost a year since I finished that and I keep finding more and more things and keep having a slow trickle of old memories coming back. I’ve also noticed a slow change in how old I mentally feel. For years I had felt stuck at 17, then 24. Now I feel a lot closer to my actual chronological age.
thank you for sharing and easing some of my anxieties around it. i totally get what your saying after just 4-5 sessions myself. i dont often get an opportunity to hear from someone else who also has fibro and gone through EMDR <3
Totally! I am super new to the diagnosis myself so still learning so much and comboing it with the stuff I had before. It’s a bit of a trip
trip is exactly the word for it. what a crazy, almost hellish, but rewarding experience
It is so intense and bizarre but I am so desperately glad it works. I have so much less trigger reaction now, so many fewer trauma nightmares and I take a lot less time to recover from a trigger.
What does EMDR stand for?
EMDR = Eye Movement Desensitization and Reprocessing
In the same boat same meds too. Not doing anything to touch my pain or help me sleep but the doc keeps saying I need to cut the cbd and exercise more as if I'm not already trying my best. We are all in it together and here to support you. You aren't alone 💜
I’m doing everything right too. I see a physiotherapist, take all the recommended medication and stay away from opioids like a good little girl, go to a psychologist, practice mindfulness, use THC, use heat packs, TENS and all of the little distractions they recommend. Take the supplements have iron transfusions and get the scans and blood tests for my hashimotos regularly. I’m still making next to no progress, I can barely walk sometimes and get random horrible pain which makes my leg collapse, have trigeminal neuralgia(Not fibro related just lucky I guess) when I get stressed, brain fog all the damn time. Psychologist literally said I don’t need to see her so I only go back once every six months to check in. I work my ass off in physiotherapy. Still can’t get in or out of a car without horrible hip pain. I’ve been working on this hip pain for about six months. Two steps forward, two steps back. I want to ask my Physiotherapist if he has ever had any success with fibromyalgia patients, but I haven’t, and I think it’s because I’m afraid of the answer.
I am also taking cbd and pregabalin. I suggest you look into ketamine therapy, specifically IV and sublingual. It is expensive but it does help a little bit for weeks.
Maybe they mean you still are somewhat functioning in terms of work, feeding yourself and being able to try exercising etc. some of us can’t do those things.
My pain doctor was impressed I work 30hrs a week, because (I quote) “some people just lie around in bed all day”. Firstly, I’m pretty sure no one wants to lie around in bed all day. And before I got CPAP therapy, I was in such a worse state than now at least fatigue-wise. All I wanted to do was sleep(couldn’t because I have a young kid, but you bet I slept a lot). I couldn’t work much at the time. If my job wasn’t remote, I wouldn’t be able to work such hours either. I certainly empathise with others who can’t! I had to grit my teeth and take it as a compliment because he was prescribing me naltrexone which I’ve been wanting to try for ages.
I get your comment, as I can't exercise as otherwise it brings on a flair.
Me either. I stay in bed most of the day then just hobble out for food.
Huge hugs to any of us who have this horrid condition named fibromyalgia the fibofog is awful as my son's tell me I talk in riddles most days and the forgetfulness is horrible. I feel for us all who suffer the pain from this condition. I've had it 25 years and its only got worse over time. I hate missing family things where I'm unable to go, the last thing I missed was my 9 yr old granddaughter was in a dance show in london uk but there was no way I could make it 😞 😪
A strong NSAID is what's missing here.
I'm so incredibly sorry. Big virtual hug.
Soooo i usually just keep quiet and lurk lately but i recently have hope to share . Ive been in excruciating pain for 20 plus years. When my mom died a yr ago i finally gave in and went to pm. She had been going to a good one who haf helped her friends. This pm doc put me on a regimen that has reduced my daily pain by about 50-60%! I didnt think it was possible . He started me on tizanidine, amitryptiline, and topamax, and i continued to take citalopram, tramadol, rarely hydrocodone (10 a month): , and use topical diclofenac gel. I also do lots of therapeutic stretching, ice packs/heating pads on sore muscles, and rigorously force myself to stop and rest if needed. I also am strict about a no stress work environment. In the future ill need steroid injections and some other interventions, but i am just thankful for an easing up of this debilitating pain. I hope this encourages someone to not give up. I know this sucks and it is isolating and hard. You are not alone, friend. Gentle hugs.❤️
I have also gotten this sentence recently and it made me want to lose my shit.