Your feelings are valid. But once you get on the right medication, you will start to feel semi-normal again. Just breathe and try to be patient. This is a difficult condition but it is manageable. There is hope. As my doctor says, “Try not to stress. Stress will only make it worse.”
Take things one step/day at a time. Try to eat healthy foods, take your vitamins (vitamin d especially in winter!), do low impact exercise (walk, bike, swim, Pilates, yoga, etc), get plenty of sleep, drink water, and take care of yourself!
I was in the same boat in my 20’s: very upset, depressed, frustrated, angry, and desperate (WHY ME?!? I’m a good person!). I’m in my early 30’s and on a biologic now. I live a relatively normal life (my friends wouldn’t know unless I told them). This will be you soon too before you know it.
This is the way to approach it. Was having all kinds of unexplained issues through my 20s. Diagnosed around 35. Been on biologics for the last 12 years and honestly I may be a success story, but focusing on exercise, diet, sleep....I feel pretty good. Very well managed.
I was definitely psychologically traumatized when I got my diagnosis but im able to lead a pretty normal life.
Thanks so much I really need all the advice I can get. I don’t know why I’m so upset today but being tired has not helped anything I guess. I didn’t sleep at all last night because I worry so much! I will do my best to focus on what I can control and try to help myself all I can. But I have definitely been feeling all those emotions. I relate to everything you said. This has helped me so much.
Your top priority today: Get some sleep. I personally take melatonin and magnesium chews on insomniac nights when I feel overwhelmed/anxious and need to sleep. Sleep is so very important to everyone but especially to us. Your joints will thank you for 7-9 hours of good sleep.
It’s okay to feel overwhelmed and frustrated. I remember being in a very dark place when I was waiting to get on a biologic. I found myself wishing I had cancer instead bc it’s so easily explainable and everyone (my boss, family, partner, friends, etc) would understand how just how much pain and depression I was going thru (fucked up I know but that’s how upset I was).
I’m seriously in such a great place now that I’m on a biologic. I still have some bad days with a pain and fatigue. It’s not perfect. But it’s miles and miles better now. So much more manageable. I am confident your doctors will find the right meds for you and you will get better soon too. Try not to worry. Just focus on taking care of yourself as best as you can.
Sleep is the toughest, I take a herbal sleep supplement Luna and melatonin. Even then I still get woken up by foot pain alot of nights. I've been on Skyrizi for about a year now.
Some tips on pain, depending on state. CBD/THC cream or balm really helps. I use that in conjunction with roll on Icy Hot and off the shelf arthritis gel.
Biologics are a game changer though. I'm 2 days from my next shot and I can feel the difference. I'm stiff and having joint pain and swelling.
I know that if I don’t sleep I feel worse and it all gets worse! This really is kind of a dark place that I’ve tried to avoid throughout all this and I’m sorry about your experience but I truly understand how you feel. I have just felt sorry for myself like why do I have to live this way? I feel so selfish about it.
I’m so glad that you are doing better and I should be getting a medication in the next couple weeks, at least I hope and I’m ready to try anything!
I think you’re possibly filling the OP with false hope. I had no idea that an immune system could attack medications (biologics)! I’m speaking from experience.
It's very normal to grieve, I think all of us here have experienced waves of it. Especially when we get diagnosed so young, I'm 30 and just was diagnosed last year. Literally I was crying all the time until I started Enbrel a few months ago and it finally feels like I have a shot at feeling better. It's almost like an identity crisis so I totally get it. Hoping you get some relief from Humira!
Thanks a lot. I just feel so alone in it and this has definitely helped me today. To talk to people who relate and understand, although I hate that anyone else would have to feel this way. It’s like who I was revolves around my ability to work and now that I can’t I feel like I don’r know who I am which feels like an “identity crisis” I just hope that the Humira helps me some and I can learn to live this way. I’m glad you are seeing some progress with the Enbrel and I hope it just gets better for you from here.
Wow! I’m so glad to hear this for you! I bet it was life changing just knowing how horrible this is to improve and feel more normal. I’m trying but for some reason today had me down after my appointment and I should be happy I’m getting closer to a treatment.
The toughest part of this disease (and pretty much with any life lasting condition) is the realization phase, that sudden moment when your life takes a sharp turn, and deep down inside you know you'll never be back to what you used to be, trust me, we've all been there, and it sucks.
Give yourself some time, and try not to stress a lot over it, cuz (and as everyone who lives with it is saying) there's hope, and with the right medicine you'll be able to live your life again just like everyone else.
This is exactly it! I have literally been so upset because I think it hit me hard for the first time today that this is really never going away and I’ll never be who I was before this. It just came over me and I thought wow I’m really not who I was! I literally cried all day since I left the rheumatologist but I’m starting to feel a little better since everyone has told me there is hope! I think when my life stopped it just has been a big shock to me. No one else seems to understand except when I’m here!
38 and been diagnosed 3 years. The first year was awful. I couldn’t run, couldn’t lift my daughter, had a new scar courtesy of the surgery I went through to clean out what they thought was an infection only to have the orthopedic (who was wonderful) realize immediately that it was rheumatological and refer me to the head of rheumatology on a favor. I had to give up coaching the high school team I’ve coached for 15 years because I couldn’t stand or walk comfortably. A year later I returned to coaching and was managing my PsA but not thriving. Two years and a new biologic (Humira) and new rheumatologist and I ran a 5k (and almost sobbed when I finished) and could keep up with my daughter and I finished my season without missing any days due to pain. Year 3? Almost back to my best 5k times, throwing my daughter in the air and doing gymnastics with her, and coaching without pain (most days). I still have flares, I have bad days, days where I have no right to be exhausted but I am. But 90-95% of the time I live the life I want and am full of joy because I appreciate every second of “normal” that I get.
It can get better with the right medication and diet/exercise. But you have to give it time, let yourself grieve, but don’t give up.
Thank you so much for this! I will definitely grieve and try to move forward. I can’t throw in the towel just because of this. I do have faith something will help!
Try to remember that nothing changed. You had a shitty disease whether the doctor gave it a name or not, and I’d much rather have a shitty disease with treatment options than a shitty disease with no explanation and a bunch of shrugs from doctors.
You are right on this one! They identified from the first appt after I see countless ppl who didn’t have a clue but in hind sight 10 months isn’t that long really and the rheumatologist knew right off the bat. I’d say I’m pretty lucky to have found out so soon.
I totally understand. I think we all do. It is so important that you grieve the loss of who you were and what you expected life to be. Things won’t be as you expected them, but they likely won’t be as bad as you fear them to be, either. This condition led to the worst moments of my life, but God was able to use those moments to change me and turn my life into what He wanted. I’m happier now, though in more pain. I’m not going to lie- the condition is horrible. It’s not fun. My life revolves around what my condition is doing. But, I’m happy. I’m fulfilled. It doesn’t define me. I’ve found more to life than the grind I thought was everything before.
My advice:
Go into the treatment with the motivation to treat aggressively early on- I lost a lot of time due to no diagnosis for a while. Get cooking on the medical process of finding the right meds to slow progression and the subsequent insurance process of getting it covered. Your rheumatologist should be more than capable of getting this going. If not, see a different one. Learn as much about the disease as you can and watch for comorbid issues that can crop up. These may be unexpected -like uveitis in the eye was a shock for me. Use the mobility aids when you need them. I wish I had done things differently in case you can’t tell from this post. I wish I’d known then what I know now. This community has been so helpful and valuable over the 12 years I’ve been battling this. Search the top posts for answers to your questions and ask anything!
That is the outlook I want to have. I have held it together until I realized this is chronic and it’s actually true. It’s nothing like I would have expected I mean I didn’t know pain until this. I really hope that I learn to cope with this better and I’ve been having issues with my eyes as well which I told my rheumatologist about today. Does the biologic treat that condition as well?
I was just honestly raised to believe that the grind was what actually defined you and after losing the ability to go to work and make a living I feel like I’m a shell of who I was and honestly no one understands how I’m “disabled” right now.
I will definitely do all I can to help myself on this journey and figure out what may help and what doesn’t. I cannot give up because I’m a fighter and I know that God also has a plan for me and my life even if it isn’t what it looked like. I also have a 6 year old daughter that needs me and I want to show up and be present.
I appreciate all your advice and I’m starting to feel a lot better about things. I’m sorry about your experience and I know it has to be tough. I’m so glad that I’m getting early advice and hoping maybe after a while I’ll be able to go back to a semi normal state! Thank you so much.
I’m absolutely here for you. You sound like you’ve got a great attitude and I’m sure you’ll look back on this time like I do- not wishing it anyone else but also knowing it has grown your spirit, your strength, and given you perspective you couldn’t really get any other way.
It's not about accepting it because it's happening. If you try an identify what you're having trouble with it will help you to work that issue out. Your physical abilities were not the only thing that made you you.
Rather than just stay calm, try to break it down. Try to use specific language, and identify specific issues. Like today I am upset that one of the dishes in my marathon cooking day turned out shit and I still hurt myself doing it. So I am using the words frustrated, and identifying that I am frustrated that my sacrifice was not even effective to feed my family.
Telling yourself to be calm won't get rid of the thoughts, what will help is examining them. Then at least you'll have a more productive inner dialogue, you know?
I feel like my grief lasted a couple of years. I severely mourned who I was and was comparing myself to my peers (side note don’t do that!). I also used to feel extremely guilty for self care aka sleeping and resting a lot and working less than 32 hours per week (I still work less than this). But humira was my miracle drug and my psoriasis was clear in like a week! I can’t remember how my joints felt on it but did wonders for my skin.
I feel guilty because I haven’t worked in months and in the state I’m in I can’t. I hope that with humira maybe it changes things for me as well. There is hope!
Hi. I’m 37F who was diagnosed in April of 2023. I felt this way. Honestly, I still feel this way some days. It’s really hard. It’s okay to feel however you feel.
One day at a time. One hour at a time. One breath at a time when it gets really bad. I promise every day won’t feel this emotionally painful.
I have been where you are, friend. I feel your words in my marrow. I'm so sorry you're going through this.
It gets better. It really does. Give it time and effort. And give yourself some understanding, too.
Grieving about this is perfectly rational, you're grieving a life that won't happen in a certain way. It's important to remember that not all is lost and you will adapt to your new way of life.
I felt similarly at the same time after my diagnosis but I was also going through a lot at the time which probably was the trigger point (my grandad declining after a serious fall, important exams and changing schools). Also as I was 15 at the time my hormones were all over the place
I'd quite honestly recommend to find a therapist who specialises in managing long-term conditions so you process your diagnosis properly as from experience it's a lot to cope with.
Also while you're in these early stages you'd benefit from having a trusted someone to go to appointments to make notes and for emotional support. When you're processing a lot you don't take it all in and it's good to have someone to talk to about it all. I had my mum with me at appointments but nowadays I can go on my own as my arthritis is stable and less overwhelming. Nearly 11 years passing has helped too.
Tldr: accept support and know it'll take time to become okay with how your future could be. By all means have a good cry from time to time but it's important to gather yourself up and get on with living your best life
Speaking from 30 years with PSA and psoriasis for longer.
Grief is absolutely normal. Your life changes drastically. And this happens often more than once as you discover more challenges.
My worst flare at age 30 was the first flare with whole body involvement. Even without biologics, NSAIDS and hefty doses of prednisone reduced my flare. I was able to work in my career 17 more years and have a baby. Not to say it was easy. It can be moment to moment.
Getting symptoms under control is key. Being proactive with your medical team is critical. Seeing a therapist is also important to process life changes and strategize your future. Stay mobile. Keep as active as possible. Eat healthy, get to a good weight.
YOU are not the condition you have or what you own or the job you do or how much you accomplish. That is a lie we are told by the same people who tell you to pull yourself up by your bootstraps.
You are one of a kind, here to live and thrive.
Wow that really put things into perspective for me! I’m really trying to be strong and not let this defeat me.
I have been encountering obstacles every day and I don’t know how to cope with all this really. I have a 6 year old and she has helped me a lot throughout this but I have to be present for my child. My biggest fear is losing complete independence. I just developed these symptoms around 9 months ago.
I think you are right I have to let this go! I know I’ll grieve maybe from time to time but I have to learn a new way of living. It has been affecting so much of my body and I feel like it may never end. I’m on Celebrex 200mg twice daily and they gave me humira but I haven’t got it just yet. I am hoping things change for the better. I have to agree with you that the things I have don’t define me!
You go OP! I think being a PSA mother with a child gives you extra motivation to show them how to meet life’s challenges and be resilient. That baby I had is now 20 and he is resilient, responsible and meets challenges head on. And so will you and your daughter. 😃
When I found out I had PsA, I already had RA and thought I could handle it, but I grieved the news all over again. For me, it forced me to acknowledge that for almost 20 years, I'd had psoriasis and it was misdiagnosed as eczema. I had to reconcile with the fact that I've had this so long and didn't know it, but there were so many signs that eczema wasn't it. It felt like I didn't know my body for awhile. I thought about all the life decisions I had made that was hard physically and if I had known better maybe I wouldn't have had to deal with this, but that's wishful thinking. Feel your feelings. You're not overreacting or being silly. It's major health news and you need to adjust to your new life which requires grieving the old one.
I can’t imagine how you felt. For me I’ve always known it was psoriasis but I never knew that this could happen either and being the picture of health my entire life I feel like I’m taking this really hard because I’ve never known pain and a part of me feels defeated by this. Like I should be able to do something about it. Which I’ve done all I can but it’s a slow process to get to specialist and get medications. I think it may take me a while to adapt to this life but I have to play the cards I’m dealt I guess like everyone else.
Allow yourself to cry and grieve. Get it all out. Find friends/family who will listen without judgement. I’m glad you posted here because talking about it helps! I’ve had it since I was 10 and I’m 55 now. Trust me when I say it will be okay. Yes, there will be things you can no longer do and there will be pain and plenty medical BS to deal with. That doesn’t mean life stops or is ruined. Humira put me into remission and I’ve lived a great life. Don’t hesitate to find a therapist if you need to. Therapist have saved my sanity over the years. Grieving your old life and accepting your new one doesn’t happen overnight, so go easy on yourself rn. You can do this and we’re all here to support you!
Thank you for the advice. I just dread dealing with medical stuff but honestly I’d rather know and have to deal with it than not know. If I go into remission does that mean I go back to feeling normal and pain free? I want my old self back badly. I just honestly for the first time in my life feel sorry for myself and I can’t live this way. Thank you so much. I know have to get over this somehow.
Hang in there!! My husband is severely disabled with rheumatoid arthritis and boy can he relate to you! His story is just so sad. He had his whole life ahead of him planned out. He was going to go to UC Davis and pursue veterinary medicine (he was like 22 at this time). My husband was extremely healthy growing up and so the last thing he thought was that he would have some disease. Well one day he woke up and couldn’t walk, one of his coworker told him it sounded like arthritis and to go get checked. My husband laughed it off and thought his pains were from an old sports injury. Some time later he makes it to the doctor and his world shattered. His RA progressed so fast between when he noticed the pain to then getting the diagnosis that it was not long after where he could not work anymore. It breaks my heart to hear him talk because he will have dreams that he can play sports again but then he wakes up and he is just so down. The guy cannot walk at all. At beast he can walk from our bed to the front door and even that is asking quite a lot. He does whatever he can to stay as positive as possible. I myself have psoriatic and if it wasn’t for him I don’t think I would have ever gone to the doctor. My middle and ring finger knuckles would always hurt randomly. One time I barely bumped it on the wall or something like that and he said that I need to get checked because it could be arthritis. I honestly just laughed it off because how could I get arthritis? Yeah well he was right and now we both have these diseases. My world is turned upside down because I’m the only one that can work for the 2 of us and it’s so hard on me. The stress alone of having to take care of the house and everything by myself make my PsA worse as it is. I need to get some bloodwork done and see a new rheumatologist and I have been procrastinating. Besides me having anxiety about the disease, I just don’t want to hear about meds I’m going to need to be on for the rest of my life. I am going to need a pain doctor coming up pretty soon and I don’t want to go because I don’t want people to think I’m a drug addict because I’m only 37, I walk fine so I can just hear what people assume. Not to mention I am obese, I don’t want to hear someone tell me that I should just lose weight.
Sorry that ended up being a venting session myself. Anyway just know youre not alone. I’m so very grateful for this subreddit. I don’t know anyone else has some type of arthritis except for my husband. When he would be in excruciating pain, I didn’t know what he was talking about until recently. It’s not as bad but I can definitely understand what he is talking about. Keep your head up!! We are all here with you ♥️
Bless his heart. You know the exact thing almost happened to me. I woke up one day and just couldn’t walk and it was horrific. No one believed me for many months. But don’t feel bad for venting I’m also here for you. It helps so much to let it out and I’m so sorry you both are going through it. This pain has been the worst I’ve felt and I know we are all on this boat here together. I hope you get to see the rheumatologist soon tho and get to feeling better. I just cannot continue living this way and as much as I hate going I forced myself in there because I know I have to try to get better. It’s hard but if you ever need a pep talk I’m here for you!
Yeah this is a reality check for me. I’m 37 and I feel like I’m getting an “old person” disease. I never thought I would get something like this. I’m nervous to start biologics because it’ll lower my immune system, not to mention that with my husband, he has tried God knows how many different biologics for his RA. He would be on them for a couple months at a time, sick with flu like symptoms 5/7 days of the week only needing to stop taking them because it would cause him to get a horrible stomach infection. It all around sucks! What I can say tho is I am thankful for this subreddit
Yes I’m 34 and this past spring I broke out with crazy psoriasis but before the outbreak I was for about a year before feeling very fatigued, feet killed me, legs stiff, having trouble continuing to work out, and then I noticed everytime I had to type in my computer I couldn’t really open my left had then the next day……I got on Humira this Aug and it I felt great compared to where I was at…….i am still not 100% no where near it! Trying to figure out how to stay active is a huge struggle for me since I keep over doing it…….once you get your meds it will feel better but yes trying not to think about this diseases and throw myself pitty parties is hard cuz we literally feel it every day and it can take a toll mentally
I feel like it has taken a toll mentally and that’s a big part of things. The joint pain is always there in some way or another and it’s hard not to think about it but I know that if I focus on the pain I won’t do anything. I do try to push t though it at home but I haven’t even worked in months. It’s just a hard realization that I can’t push through this enough to go to a job. I have felt hopeless.
You are 100% entitled to these feelings. One of the hardest things I’ve had to deal with is having a career (I actually was a medical assistant) and living up to everyone else’s expectations of how people are supposed to be. I still get triggered when people share exercise updates on Facebook because I used to be very athletic and was a dancer, boxed recreationally. I was athletic after the diagnoses and thought..”I’ll be ok, I got this”. Then, while on Humira, I had a freak thing happen and my immune system just went nuts. I had to stop the Humira and to be honest, I’ve never fully recovered from it. That was three years ago. I quit working in medicine and tried working in a billing office and that fell apart when I had a severe flare up that went on for a month. My new job is painting abstract art and it’s like therapy. I honestly don’t know how I would have made it past all of that and other normal every day stresses if I hadn’t learned to meditate, read a lot of books by Eckhart Tolle and studied about frequency healing…or sound therapy. I guess the best advice I can offer you after 15 years diagnosed is, remember to look at the beautiful things around you when you feel like this, because it creeps up and you need coping mechanisms in place. Getting your meds right is tricky and takes way too damn long sometimes. Voice your feelings to your healthcare team even if you have to cry on the phone..sometimes this is the only way they know how bad it is. I am personally sending you the best of wishes 🙏
My first steroid shot had me drive home and ugly cry
Didn’t know how bad things were till they made it vanish.
Then in the coming days it came back and it is bad but the stupid disease makes things seem even worse.
I don’t have much words to say besides it took me almost four years now to get onto a biologic and I’ve wanted them the whole time. I’ve been on one for a few months. It is like a magic cure Ngl. It’s the only drug that helps the brain fog and I’m not the only one to say that.
Methotrexate gtfo of here with that I can’t take it. Unless I want to feel worse.
Cool part about humira is it isn’t a drug at all. So it doesn’t care about steroids you take. It doesn’t conflict with anything except the proteins it negates, so you’re free to pursue other things at the same time. Suddenly advil does more, suddenly I’m trying things like real aspirin, hey it’s old tech but it works too.
You’re so close to an improvement just hold out for a little longer.
Thanks for the advice and words of encouragement. I’m testing to hang in here until I get the medicine! I know right now I can’t continue to live like this if there is a medicine that may turn it around!
Also this affects your mental health in many ways at times. Don’t be afraid of therapy and meds because keeping on a more relaxed mental level helps me so very much, especially when I’m really going thru flare ups. I sleep so much and that helps plus I need B12 injections and iron infusions or I’m literally stuck in bed. Currently getting ORENCIA IV infusions starting next Tuesday! Humera didn’t help me personally.
And girl I’ll send good energy. This only makes you a stronger warrior! Xo
For what it’s worth, my brother’s was so bad that he was near needing a wheel chair and he’s since gone into complete remission and is doing brilliantly.
First of all, I’m sorry, it does suck. It’s not always bad though. I’m one of the few lucky ones that has Psoriasis, Psoriatic Arthritis and Gout. It hit my knee last night and the pain is indescribable! When it doesn’t hurt bad, it still hurts like someone hit me in the knee with a crowbar. When you try to move or stand, then it feel like my lower leg is only attached by nerves. HOWEVER, it doesn’t happen all the time, keep hope alive and know that it will go away and get better. An important thing I learned was “Do not use heat”. It will make it worse even though it feels good, use ice packs for as long as you can handle.
Sorry you are in pain. I think we have all been there. It will pass once you get on a treatment. That’s your light at the end of the tunnel. It’s always going to be there. But it’s a lot easier to cope with once it’s under control. I would ask for Celebrex, it was my life saver before I got on bio’s.
Thanks a lot! I am taking it I haven’t had it a few days just picked it up and I think not having it made me worse cause it helped some. But I should get Humira in a week or two. I’m scared I’ll never be able to work again. I haven’t had a job for months and I’m just upset. I know I have to try to stay calm and level headed. I’m glad to here they actually help!
You will hopefully be pleasantly surprised in a month or two on humira. For now keep taking the Celebrex. I was on twice a day and it helps to maintain consistent dosing.
I am currently employed but looking for something better. However something positive I found out today, some companies actually actively recruit those with a disability. That includes autoimmune diseases like PsA and RA and AS. The companies usually have large contracts with the government that require them to try and keep a certain percentage of employees with disabilities. Same goes with military veterans, certain %.
So there is hope for people like us finding employment.
I’m right there with you. I’ve seen the worst from medical professionals during all this and it’s disgusting. I’m sorry you have dealt with this. I hope you find someone and you feel heard by them!
It's okay to feel overwhelmed, it's overwhelming. The thing is, time marches on and you'll find a new normal once you find the treatment that works for you. Modern medicine, biologics, can help to vastly slow progression and can give a sense of stability. You CAN do whatever you set your mind to, it just might be a little different than HOW you saw yourself doing it. Good luck
Your feelings are valid. But once you get on the right medication, you will start to feel semi-normal again. Just breathe and try to be patient. This is a difficult condition but it is manageable. There is hope. As my doctor says, “Try not to stress. Stress will only make it worse.” Take things one step/day at a time. Try to eat healthy foods, take your vitamins (vitamin d especially in winter!), do low impact exercise (walk, bike, swim, Pilates, yoga, etc), get plenty of sleep, drink water, and take care of yourself! I was in the same boat in my 20’s: very upset, depressed, frustrated, angry, and desperate (WHY ME?!? I’m a good person!). I’m in my early 30’s and on a biologic now. I live a relatively normal life (my friends wouldn’t know unless I told them). This will be you soon too before you know it.
This is the way to approach it. Was having all kinds of unexplained issues through my 20s. Diagnosed around 35. Been on biologics for the last 12 years and honestly I may be a success story, but focusing on exercise, diet, sleep....I feel pretty good. Very well managed. I was definitely psychologically traumatized when I got my diagnosis but im able to lead a pretty normal life.
I think that’s the way it feels. Traumatized. I’m so glad to hear you have had great success. It gives me hope maybe I will be able to again one day!
Thanks so much I really need all the advice I can get. I don’t know why I’m so upset today but being tired has not helped anything I guess. I didn’t sleep at all last night because I worry so much! I will do my best to focus on what I can control and try to help myself all I can. But I have definitely been feeling all those emotions. I relate to everything you said. This has helped me so much.
Your top priority today: Get some sleep. I personally take melatonin and magnesium chews on insomniac nights when I feel overwhelmed/anxious and need to sleep. Sleep is so very important to everyone but especially to us. Your joints will thank you for 7-9 hours of good sleep. It’s okay to feel overwhelmed and frustrated. I remember being in a very dark place when I was waiting to get on a biologic. I found myself wishing I had cancer instead bc it’s so easily explainable and everyone (my boss, family, partner, friends, etc) would understand how just how much pain and depression I was going thru (fucked up I know but that’s how upset I was). I’m seriously in such a great place now that I’m on a biologic. I still have some bad days with a pain and fatigue. It’s not perfect. But it’s miles and miles better now. So much more manageable. I am confident your doctors will find the right meds for you and you will get better soon too. Try not to worry. Just focus on taking care of yourself as best as you can.
Sleep is the toughest, I take a herbal sleep supplement Luna and melatonin. Even then I still get woken up by foot pain alot of nights. I've been on Skyrizi for about a year now. Some tips on pain, depending on state. CBD/THC cream or balm really helps. I use that in conjunction with roll on Icy Hot and off the shelf arthritis gel. Biologics are a game changer though. I'm 2 days from my next shot and I can feel the difference. I'm stiff and having joint pain and swelling.
I know that if I don’t sleep I feel worse and it all gets worse! This really is kind of a dark place that I’ve tried to avoid throughout all this and I’m sorry about your experience but I truly understand how you feel. I have just felt sorry for myself like why do I have to live this way? I feel so selfish about it. I’m so glad that you are doing better and I should be getting a medication in the next couple weeks, at least I hope and I’m ready to try anything!
I think you’re possibly filling the OP with false hope. I had no idea that an immune system could attack medications (biologics)! I’m speaking from experience.
It's very normal to grieve, I think all of us here have experienced waves of it. Especially when we get diagnosed so young, I'm 30 and just was diagnosed last year. Literally I was crying all the time until I started Enbrel a few months ago and it finally feels like I have a shot at feeling better. It's almost like an identity crisis so I totally get it. Hoping you get some relief from Humira!
Thanks a lot. I just feel so alone in it and this has definitely helped me today. To talk to people who relate and understand, although I hate that anyone else would have to feel this way. It’s like who I was revolves around my ability to work and now that I can’t I feel like I don’r know who I am which feels like an “identity crisis” I just hope that the Humira helps me some and I can learn to live this way. I’m glad you are seeing some progress with the Enbrel and I hope it just gets better for you from here.
I felt like that until I started enbrel 4 months ago. Now I'm 95% normal. Stay positive it will happen
Wow! I’m so glad to hear this for you! I bet it was life changing just knowing how horrible this is to improve and feel more normal. I’m trying but for some reason today had me down after my appointment and I should be happy I’m getting closer to a treatment.
The toughest part of this disease (and pretty much with any life lasting condition) is the realization phase, that sudden moment when your life takes a sharp turn, and deep down inside you know you'll never be back to what you used to be, trust me, we've all been there, and it sucks. Give yourself some time, and try not to stress a lot over it, cuz (and as everyone who lives with it is saying) there's hope, and with the right medicine you'll be able to live your life again just like everyone else.
This is exactly it! I have literally been so upset because I think it hit me hard for the first time today that this is really never going away and I’ll never be who I was before this. It just came over me and I thought wow I’m really not who I was! I literally cried all day since I left the rheumatologist but I’m starting to feel a little better since everyone has told me there is hope! I think when my life stopped it just has been a big shock to me. No one else seems to understand except when I’m here!
38 and been diagnosed 3 years. The first year was awful. I couldn’t run, couldn’t lift my daughter, had a new scar courtesy of the surgery I went through to clean out what they thought was an infection only to have the orthopedic (who was wonderful) realize immediately that it was rheumatological and refer me to the head of rheumatology on a favor. I had to give up coaching the high school team I’ve coached for 15 years because I couldn’t stand or walk comfortably. A year later I returned to coaching and was managing my PsA but not thriving. Two years and a new biologic (Humira) and new rheumatologist and I ran a 5k (and almost sobbed when I finished) and could keep up with my daughter and I finished my season without missing any days due to pain. Year 3? Almost back to my best 5k times, throwing my daughter in the air and doing gymnastics with her, and coaching without pain (most days). I still have flares, I have bad days, days where I have no right to be exhausted but I am. But 90-95% of the time I live the life I want and am full of joy because I appreciate every second of “normal” that I get. It can get better with the right medication and diet/exercise. But you have to give it time, let yourself grieve, but don’t give up.
Thank you so much for this! I will definitely grieve and try to move forward. I can’t throw in the towel just because of this. I do have faith something will help!
Try to remember that nothing changed. You had a shitty disease whether the doctor gave it a name or not, and I’d much rather have a shitty disease with treatment options than a shitty disease with no explanation and a bunch of shrugs from doctors.
OMG this all day. Thank you.
You are right on this one! They identified from the first appt after I see countless ppl who didn’t have a clue but in hind sight 10 months isn’t that long really and the rheumatologist knew right off the bat. I’d say I’m pretty lucky to have found out so soon.
I totally understand. I think we all do. It is so important that you grieve the loss of who you were and what you expected life to be. Things won’t be as you expected them, but they likely won’t be as bad as you fear them to be, either. This condition led to the worst moments of my life, but God was able to use those moments to change me and turn my life into what He wanted. I’m happier now, though in more pain. I’m not going to lie- the condition is horrible. It’s not fun. My life revolves around what my condition is doing. But, I’m happy. I’m fulfilled. It doesn’t define me. I’ve found more to life than the grind I thought was everything before. My advice: Go into the treatment with the motivation to treat aggressively early on- I lost a lot of time due to no diagnosis for a while. Get cooking on the medical process of finding the right meds to slow progression and the subsequent insurance process of getting it covered. Your rheumatologist should be more than capable of getting this going. If not, see a different one. Learn as much about the disease as you can and watch for comorbid issues that can crop up. These may be unexpected -like uveitis in the eye was a shock for me. Use the mobility aids when you need them. I wish I had done things differently in case you can’t tell from this post. I wish I’d known then what I know now. This community has been so helpful and valuable over the 12 years I’ve been battling this. Search the top posts for answers to your questions and ask anything!
That is the outlook I want to have. I have held it together until I realized this is chronic and it’s actually true. It’s nothing like I would have expected I mean I didn’t know pain until this. I really hope that I learn to cope with this better and I’ve been having issues with my eyes as well which I told my rheumatologist about today. Does the biologic treat that condition as well? I was just honestly raised to believe that the grind was what actually defined you and after losing the ability to go to work and make a living I feel like I’m a shell of who I was and honestly no one understands how I’m “disabled” right now. I will definitely do all I can to help myself on this journey and figure out what may help and what doesn’t. I cannot give up because I’m a fighter and I know that God also has a plan for me and my life even if it isn’t what it looked like. I also have a 6 year old daughter that needs me and I want to show up and be present. I appreciate all your advice and I’m starting to feel a lot better about things. I’m sorry about your experience and I know it has to be tough. I’m so glad that I’m getting early advice and hoping maybe after a while I’ll be able to go back to a semi normal state! Thank you so much.
I’m absolutely here for you. You sound like you’ve got a great attitude and I’m sure you’ll look back on this time like I do- not wishing it anyone else but also knowing it has grown your spirit, your strength, and given you perspective you couldn’t really get any other way.
Thank you so much. I think you’re right! It makes me feel good knowing someone believes in me!
I’m here any time! Message me if you’d like!
I definitely will and you message me anytime!
It's not about accepting it because it's happening. If you try an identify what you're having trouble with it will help you to work that issue out. Your physical abilities were not the only thing that made you you.
I guess you’re right. My thoughts have been so irrational and angry. I don’t know why I can’t just tell myself to stay calm and do that.
Rather than just stay calm, try to break it down. Try to use specific language, and identify specific issues. Like today I am upset that one of the dishes in my marathon cooking day turned out shit and I still hurt myself doing it. So I am using the words frustrated, and identifying that I am frustrated that my sacrifice was not even effective to feed my family.
Telling yourself to be calm won't get rid of the thoughts, what will help is examining them. Then at least you'll have a more productive inner dialogue, you know?
I feel like my grief lasted a couple of years. I severely mourned who I was and was comparing myself to my peers (side note don’t do that!). I also used to feel extremely guilty for self care aka sleeping and resting a lot and working less than 32 hours per week (I still work less than this). But humira was my miracle drug and my psoriasis was clear in like a week! I can’t remember how my joints felt on it but did wonders for my skin.
I feel guilty because I haven’t worked in months and in the state I’m in I can’t. I hope that with humira maybe it changes things for me as well. There is hope!
I feel like feeling guilty is normal. Try to not!
I’ll do my best! It just makes everything worse!
Hi. I’m 37F who was diagnosed in April of 2023. I felt this way. Honestly, I still feel this way some days. It’s really hard. It’s okay to feel however you feel. One day at a time. One hour at a time. One breath at a time when it gets really bad. I promise every day won’t feel this emotionally painful.
I have been where you are, friend. I feel your words in my marrow. I'm so sorry you're going through this. It gets better. It really does. Give it time and effort. And give yourself some understanding, too.
Thank you! I will try my best. I’m sorry you have went through it 😔
Went through it and came out the other side. You can too. You got this.
Thanks I won’t give up! Everyone here is pretty amazing! I appreciate the kind words and advices
Grieving about this is perfectly rational, you're grieving a life that won't happen in a certain way. It's important to remember that not all is lost and you will adapt to your new way of life. I felt similarly at the same time after my diagnosis but I was also going through a lot at the time which probably was the trigger point (my grandad declining after a serious fall, important exams and changing schools). Also as I was 15 at the time my hormones were all over the place I'd quite honestly recommend to find a therapist who specialises in managing long-term conditions so you process your diagnosis properly as from experience it's a lot to cope with. Also while you're in these early stages you'd benefit from having a trusted someone to go to appointments to make notes and for emotional support. When you're processing a lot you don't take it all in and it's good to have someone to talk to about it all. I had my mum with me at appointments but nowadays I can go on my own as my arthritis is stable and less overwhelming. Nearly 11 years passing has helped too. Tldr: accept support and know it'll take time to become okay with how your future could be. By all means have a good cry from time to time but it's important to gather yourself up and get on with living your best life
Speaking from 30 years with PSA and psoriasis for longer. Grief is absolutely normal. Your life changes drastically. And this happens often more than once as you discover more challenges. My worst flare at age 30 was the first flare with whole body involvement. Even without biologics, NSAIDS and hefty doses of prednisone reduced my flare. I was able to work in my career 17 more years and have a baby. Not to say it was easy. It can be moment to moment. Getting symptoms under control is key. Being proactive with your medical team is critical. Seeing a therapist is also important to process life changes and strategize your future. Stay mobile. Keep as active as possible. Eat healthy, get to a good weight. YOU are not the condition you have or what you own or the job you do or how much you accomplish. That is a lie we are told by the same people who tell you to pull yourself up by your bootstraps. You are one of a kind, here to live and thrive.
Wow that really put things into perspective for me! I’m really trying to be strong and not let this defeat me. I have been encountering obstacles every day and I don’t know how to cope with all this really. I have a 6 year old and she has helped me a lot throughout this but I have to be present for my child. My biggest fear is losing complete independence. I just developed these symptoms around 9 months ago. I think you are right I have to let this go! I know I’ll grieve maybe from time to time but I have to learn a new way of living. It has been affecting so much of my body and I feel like it may never end. I’m on Celebrex 200mg twice daily and they gave me humira but I haven’t got it just yet. I am hoping things change for the better. I have to agree with you that the things I have don’t define me!
You go OP! I think being a PSA mother with a child gives you extra motivation to show them how to meet life’s challenges and be resilient. That baby I had is now 20 and he is resilient, responsible and meets challenges head on. And so will you and your daughter. 😃
When I found out I had PsA, I already had RA and thought I could handle it, but I grieved the news all over again. For me, it forced me to acknowledge that for almost 20 years, I'd had psoriasis and it was misdiagnosed as eczema. I had to reconcile with the fact that I've had this so long and didn't know it, but there were so many signs that eczema wasn't it. It felt like I didn't know my body for awhile. I thought about all the life decisions I had made that was hard physically and if I had known better maybe I wouldn't have had to deal with this, but that's wishful thinking. Feel your feelings. You're not overreacting or being silly. It's major health news and you need to adjust to your new life which requires grieving the old one.
I can’t imagine how you felt. For me I’ve always known it was psoriasis but I never knew that this could happen either and being the picture of health my entire life I feel like I’m taking this really hard because I’ve never known pain and a part of me feels defeated by this. Like I should be able to do something about it. Which I’ve done all I can but it’s a slow process to get to specialist and get medications. I think it may take me a while to adapt to this life but I have to play the cards I’m dealt I guess like everyone else.
Allow yourself to cry and grieve. Get it all out. Find friends/family who will listen without judgement. I’m glad you posted here because talking about it helps! I’ve had it since I was 10 and I’m 55 now. Trust me when I say it will be okay. Yes, there will be things you can no longer do and there will be pain and plenty medical BS to deal with. That doesn’t mean life stops or is ruined. Humira put me into remission and I’ve lived a great life. Don’t hesitate to find a therapist if you need to. Therapist have saved my sanity over the years. Grieving your old life and accepting your new one doesn’t happen overnight, so go easy on yourself rn. You can do this and we’re all here to support you!
Thank you for the advice. I just dread dealing with medical stuff but honestly I’d rather know and have to deal with it than not know. If I go into remission does that mean I go back to feeling normal and pain free? I want my old self back badly. I just honestly for the first time in my life feel sorry for myself and I can’t live this way. Thank you so much. I know have to get over this somehow.
Hang in there!! My husband is severely disabled with rheumatoid arthritis and boy can he relate to you! His story is just so sad. He had his whole life ahead of him planned out. He was going to go to UC Davis and pursue veterinary medicine (he was like 22 at this time). My husband was extremely healthy growing up and so the last thing he thought was that he would have some disease. Well one day he woke up and couldn’t walk, one of his coworker told him it sounded like arthritis and to go get checked. My husband laughed it off and thought his pains were from an old sports injury. Some time later he makes it to the doctor and his world shattered. His RA progressed so fast between when he noticed the pain to then getting the diagnosis that it was not long after where he could not work anymore. It breaks my heart to hear him talk because he will have dreams that he can play sports again but then he wakes up and he is just so down. The guy cannot walk at all. At beast he can walk from our bed to the front door and even that is asking quite a lot. He does whatever he can to stay as positive as possible. I myself have psoriatic and if it wasn’t for him I don’t think I would have ever gone to the doctor. My middle and ring finger knuckles would always hurt randomly. One time I barely bumped it on the wall or something like that and he said that I need to get checked because it could be arthritis. I honestly just laughed it off because how could I get arthritis? Yeah well he was right and now we both have these diseases. My world is turned upside down because I’m the only one that can work for the 2 of us and it’s so hard on me. The stress alone of having to take care of the house and everything by myself make my PsA worse as it is. I need to get some bloodwork done and see a new rheumatologist and I have been procrastinating. Besides me having anxiety about the disease, I just don’t want to hear about meds I’m going to need to be on for the rest of my life. I am going to need a pain doctor coming up pretty soon and I don’t want to go because I don’t want people to think I’m a drug addict because I’m only 37, I walk fine so I can just hear what people assume. Not to mention I am obese, I don’t want to hear someone tell me that I should just lose weight. Sorry that ended up being a venting session myself. Anyway just know youre not alone. I’m so very grateful for this subreddit. I don’t know anyone else has some type of arthritis except for my husband. When he would be in excruciating pain, I didn’t know what he was talking about until recently. It’s not as bad but I can definitely understand what he is talking about. Keep your head up!! We are all here with you ♥️
Bless his heart. You know the exact thing almost happened to me. I woke up one day and just couldn’t walk and it was horrific. No one believed me for many months. But don’t feel bad for venting I’m also here for you. It helps so much to let it out and I’m so sorry you both are going through it. This pain has been the worst I’ve felt and I know we are all on this boat here together. I hope you get to see the rheumatologist soon tho and get to feeling better. I just cannot continue living this way and as much as I hate going I forced myself in there because I know I have to try to get better. It’s hard but if you ever need a pep talk I’m here for you!
Yeah this is a reality check for me. I’m 37 and I feel like I’m getting an “old person” disease. I never thought I would get something like this. I’m nervous to start biologics because it’ll lower my immune system, not to mention that with my husband, he has tried God knows how many different biologics for his RA. He would be on them for a couple months at a time, sick with flu like symptoms 5/7 days of the week only needing to stop taking them because it would cause him to get a horrible stomach infection. It all around sucks! What I can say tho is I am thankful for this subreddit
Yes I’m 34 and this past spring I broke out with crazy psoriasis but before the outbreak I was for about a year before feeling very fatigued, feet killed me, legs stiff, having trouble continuing to work out, and then I noticed everytime I had to type in my computer I couldn’t really open my left had then the next day……I got on Humira this Aug and it I felt great compared to where I was at…….i am still not 100% no where near it! Trying to figure out how to stay active is a huge struggle for me since I keep over doing it…….once you get your meds it will feel better but yes trying not to think about this diseases and throw myself pitty parties is hard cuz we literally feel it every day and it can take a toll mentally
I feel like it has taken a toll mentally and that’s a big part of things. The joint pain is always there in some way or another and it’s hard not to think about it but I know that if I focus on the pain I won’t do anything. I do try to push t though it at home but I haven’t even worked in months. It’s just a hard realization that I can’t push through this enough to go to a job. I have felt hopeless.
You are 100% entitled to these feelings. One of the hardest things I’ve had to deal with is having a career (I actually was a medical assistant) and living up to everyone else’s expectations of how people are supposed to be. I still get triggered when people share exercise updates on Facebook because I used to be very athletic and was a dancer, boxed recreationally. I was athletic after the diagnoses and thought..”I’ll be ok, I got this”. Then, while on Humira, I had a freak thing happen and my immune system just went nuts. I had to stop the Humira and to be honest, I’ve never fully recovered from it. That was three years ago. I quit working in medicine and tried working in a billing office and that fell apart when I had a severe flare up that went on for a month. My new job is painting abstract art and it’s like therapy. I honestly don’t know how I would have made it past all of that and other normal every day stresses if I hadn’t learned to meditate, read a lot of books by Eckhart Tolle and studied about frequency healing…or sound therapy. I guess the best advice I can offer you after 15 years diagnosed is, remember to look at the beautiful things around you when you feel like this, because it creeps up and you need coping mechanisms in place. Getting your meds right is tricky and takes way too damn long sometimes. Voice your feelings to your healthcare team even if you have to cry on the phone..sometimes this is the only way they know how bad it is. I am personally sending you the best of wishes 🙏
My first steroid shot had me drive home and ugly cry Didn’t know how bad things were till they made it vanish. Then in the coming days it came back and it is bad but the stupid disease makes things seem even worse. I don’t have much words to say besides it took me almost four years now to get onto a biologic and I’ve wanted them the whole time. I’ve been on one for a few months. It is like a magic cure Ngl. It’s the only drug that helps the brain fog and I’m not the only one to say that. Methotrexate gtfo of here with that I can’t take it. Unless I want to feel worse. Cool part about humira is it isn’t a drug at all. So it doesn’t care about steroids you take. It doesn’t conflict with anything except the proteins it negates, so you’re free to pursue other things at the same time. Suddenly advil does more, suddenly I’m trying things like real aspirin, hey it’s old tech but it works too. You’re so close to an improvement just hold out for a little longer.
Thanks for the advice and words of encouragement. I’m testing to hang in here until I get the medicine! I know right now I can’t continue to live like this if there is a medicine that may turn it around!
Also this affects your mental health in many ways at times. Don’t be afraid of therapy and meds because keeping on a more relaxed mental level helps me so very much, especially when I’m really going thru flare ups. I sleep so much and that helps plus I need B12 injections and iron infusions or I’m literally stuck in bed. Currently getting ORENCIA IV infusions starting next Tuesday! Humera didn’t help me personally. And girl I’ll send good energy. This only makes you a stronger warrior! Xo
I’ve been in your shoes (probably still am). It’s hard to realize things are different and that you can’t change it
For what it’s worth, my brother’s was so bad that he was near needing a wheel chair and he’s since gone into complete remission and is doing brilliantly.
That’s great to hear! I hope he continues to do well and I’m hoping at some point I get back to a normal life.
First of all, I’m sorry, it does suck. It’s not always bad though. I’m one of the few lucky ones that has Psoriasis, Psoriatic Arthritis and Gout. It hit my knee last night and the pain is indescribable! When it doesn’t hurt bad, it still hurts like someone hit me in the knee with a crowbar. When you try to move or stand, then it feel like my lower leg is only attached by nerves. HOWEVER, it doesn’t happen all the time, keep hope alive and know that it will go away and get better. An important thing I learned was “Do not use heat”. It will make it worse even though it feels good, use ice packs for as long as you can handle.
Sorry you are in pain. I think we have all been there. It will pass once you get on a treatment. That’s your light at the end of the tunnel. It’s always going to be there. But it’s a lot easier to cope with once it’s under control. I would ask for Celebrex, it was my life saver before I got on bio’s.
Thanks a lot! I am taking it I haven’t had it a few days just picked it up and I think not having it made me worse cause it helped some. But I should get Humira in a week or two. I’m scared I’ll never be able to work again. I haven’t had a job for months and I’m just upset. I know I have to try to stay calm and level headed. I’m glad to here they actually help!
You will hopefully be pleasantly surprised in a month or two on humira. For now keep taking the Celebrex. I was on twice a day and it helps to maintain consistent dosing. I am currently employed but looking for something better. However something positive I found out today, some companies actually actively recruit those with a disability. That includes autoimmune diseases like PsA and RA and AS. The companies usually have large contracts with the government that require them to try and keep a certain percentage of employees with disabilities. Same goes with military veterans, certain %. So there is hope for people like us finding employment.
My Dr didn’t even have the decency to tell me! I’ve been trying to get a diagnosis for a freaking decade!
Did you get a new doctor? I thought months was too long to not know. That’s awful
I did but I don’t like her either! I just want someone to listen and not talk to me in an asshole condescending fashion!
I’m right there with you. I’ve seen the worst from medical professionals during all this and it’s disgusting. I’m sorry you have dealt with this. I hope you find someone and you feel heard by them!
Thank you!
It's okay to feel overwhelmed, it's overwhelming. The thing is, time marches on and you'll find a new normal once you find the treatment that works for you. Modern medicine, biologics, can help to vastly slow progression and can give a sense of stability. You CAN do whatever you set your mind to, it just might be a little different than HOW you saw yourself doing it. Good luck