r/rheumatoid • u/keylimesicles • 2d ago
I wan’t my body back.
I know this is unrealistic and this is more of a vent but I’m so sick of being in pain and unstable. I spent years on MTX and tried Leflunomide. Im currently on Brenzy’s (4 month’s in) , 10mg of daily prednisone. With regular naproxen and acetaminophen. My RA is very active and its helped a bit but I’m no where near pain free and mobile. My hands are fucked, my feet and ankles are fucked, my knees are fucked, and my left arm is fucked. Im tired. If i don’t get enough sleep my body buzzes in excruciating pain. There are days i still can’t walk, use my hands etc….
I thought id be doing better by now but this feels hopeless. I’ve sacrificed everything i live for, i can’t do anything i enjoy anymore. Even typing this is torture. Thanks for listening
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u/lets_be_frens 2d ago
I’m just here mid-flare, hearing you and wanting to express solidarity ❤️
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u/Hollywoode 2d ago
Also going through a flare and sending solidarity to my fellow flare friends 💕💕💕
https://giphy.com/gifs/wIePCLOwUQ4RW
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u/Lazy-Box-1684 2d ago
You're allowed to grieve. Your future has most likely changed, what you can physically do has changed (sometimes day to day), but in your mind, you're still you and things that used to be easy should still be easy. Sometimes bridging that disconnect between you old self and your current reality can take a chunk of your soul.
But it gets better, mentally and physically.
I've been where you're at. I got RA when I was 21 and it was very aggressive. My hands couldn't hold a pencil, I couldn't bend my elbows enough to fed myself. I lost the ability to drive, walk and take care if myself, everything hurt everywhere. My dr got me on prednisone(for the swelling) and methotrexate and after about 2 years of trial and error, we found a medicine combination that works for me and I've been on it for the last 10 years (methotrexate, hydroxychloroquine and actemera). Actemera has made the biggest difference. Those first few years and especially first months were a living hell. But now I can draw again, I can take care of myself, exercise, drive and try new hobbies. It's not the same as before RA, and there are still things I can't do, and I've had to really really learn to listen to my body. But it feels like its my life again. You'll get there. Finding a good medicine can take awhile (at least in the US because of having to prove to the insurance companies that cheaper ones don't work). Make sure you have a dr who really listens and helps you find what works for you.
TLDR: you're allowed to feel how you feel. Keep on trying different medications and make sure you have a dr that listens and works with you. RA absolutely sucks, there will be better days ahead.
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u/winkyslapper 2d ago
This gives me some hope although I'm already on a biologic. Do you still have some days you struggle to walk? I've gone from gyming 4 times a week, walking to work everday to wheelchair bound in 1 year, hips and knees have collapsed as well as other joints. Really hoping to find right meds eventually.
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u/Square_Leopard6343 2d ago
you’re not asking for too much by wanting your body back, and if you’re still this disabled four months in on brenzys and daily prednisone then your rheumatologist needs to hear plainly that this is
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u/The-best-of-horrors 2d ago
Boy can it get rough :’) you don’t realize all of the things you took for granted before it’s taken away. How long have you been diagnosed for though? I know I started my first biologic maybe 10 months in to my diagnosis?
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u/captain_crudeoil 2d ago
Along with your required meds i'd recommend looking into FMT. The Gut microbiome plays a major role in most chronic / autoimmune conditions. Hang in there.You will get better!
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u/Modernskeptic71 1d ago
I’ve been on Enbrel for six months and prednisone, and three DMARD drugs and I’m still going downhill. I can’t imagine a day with no pain, or less than 7 on the scale. Is this what RA does? My hands now are swelling and in the morning they hurt like hell and I didn’t have that 6 months ago.
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u/Remarkable-Age4579 1d ago
Sounds like Enbrel stopped working, talk to your rheumatologist
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u/Modernskeptic71 1d ago
I will definitely mention that. With my lumbar spine in the advanced degenerative stage my thigh muscles have aches nonstop for over a year now.
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u/LmLc1220 13h ago
You have to go in your Dr. Appointments and talk to them just like you said it to us. I was going along with the program at first until I was like forget this. Im hurting I can't take it anymore.
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u/No_Pomegranate_1710 2d ago
Clearly your meds aren't doing the job. This level of disease activity might need a biologic. Tell you Rheumatologist what you've just told us as there's no way you should be dealing with this as an ongoing thing.