r/rheumatoid

For years I always somehow unintentionally sleep with my hands balled up in a fist (I don't fall asleep like that at first) somehow it just always happens and then my hands are so sore and stiff when I wake up, does this happen to anyone else?

My Dr was assuming I had rheumatoid arthritis and was the most likely thing according to his screening and my symtoms. I have made a few posts about my journey and I'm completely confused and upset with my results.

Rheumatoid factor: normal range <20

Anti-ccp: <8 where normal range is <16

ANA: normal range with titre of 1:80

All my blood tests were normal and negative for autoimmune or inflammation. Over the past year it's been normal and negative blood test and ultrasound after another. No, I don't want a positive test, I want answers and treatment to my hurting body. Why on earth do I feel like I've been hit by a bus, joint pain, brain fog, I don't have enough energy to do anything, headache and do I have all the debilitating symptoms when I'm "normal". I can't do anything without feeling the worst have ever felt.

This is the most supportive community I've had with my current physical state and I am sorry if it's not allowed. I'm young and don't know anyone going through what I'm going through. I don't have a rheumatologist and I don't know what to do because according to my tests, I'm as healthy as can be.

Does this sound like anyone else's story? I'm at such a loss... I dont know enough about chronic pain conditions to even know where to start again. I can ask for an x-ray of my bones as they hurt very much everywhere but is that a good place to go from here?

Thank you everyone here for all your kind words in my previous posts 🫶💕 you are the reason I am keeping going and you truly have been so helpful.

It makes me laugh how much I've done in pursuit of being healthy.

For 300,000 years, humans didn't have health routines because life was the routine. You ate what you could find. You moved because you had to. You slept when it got dark. Then in the last 200 years we built a world that doesn't really work for our biology anymore, and now people like me spend adult lives trying to claw back to something that used to just be life.

I started at 15, when I was diagnosed with RA. For the next fifteen years, I looked for the answer. The perfect diet. The right protocol. The supplement, the doctor, the test, the fix. I tried things that worked a little, things that worked for a while, things that didn't work at all. I got really good at researching.

I wish someone had told me then that all the searching was part of what was keeping me sick. Not because any one thing I tried was inherently wrong. It's that the constant pressure to find the one thing, in that endless sea of information, is its own kind of stress. If you're searching, your mind is running, your eyes are straining, your body is never relaxed.

The quick-fix industry isn't just selling supplements. It's selling the idea that an answer exists. That somewhere in the next protocol, the next diet, the next device, there's a key that unlocks the version of you that isn't tired or in pain. I spent fifteen years inside that loop. The loop is the product. As long as you're searching, you're buying.

What changed for me wasn't finding the answer. It was a specific moment sitting in front of yet another browser tab about yet another supplement, just tired. I closed the laptop and went outside instead. Not because I thought it would fix anything. Just because I was done for the day. That became a habit. And then it became the thing.

In the last year I've lived closer to nature than I ever have. Outside barefoot every day. Real breaks from screens. Real food, simply cooked. That's it.

I'm still on medication. I want to be clear about that. But under my doctor's supervision, I've gone from weekly injections to monthly. I spent years chasing that result with protocols and research. It came from changing how I live, not from finding the perfect thing.

I still don't have it all figured out. Some days I crush it. Some days I want takeout and TV until my eyes hurt.

The point isn't that I've arrived somewhere. It's that I stopped looking for the answer in a bottle or on a screen and started looking for it out the window.

Most of what we call wellness is just an elaborate, expensive attempt to simulate what's already free outside our doors.

My father (48) who is the strongest man I know stopped working in October of 2025. The whole beginning of 2025 year he was the strongest he’d ever been. Strength training, hockey, doing all the running you could imagine. Then October came and ever since then he can barely walk. He’s been on prednisone, the steroids and whatever other medications the RA doctor prescribed him. The medication works sometimes but his flares work harder. I recently had to quit my job to stay at home and care for him. He has been falling, crying and constantly in pain. I’ve been making him anti-inflammatory meals, cbd massages, salt water baths. Anything you can think of I will do. I’m scared, he’s scared, my mother is scared. I hate this disease. I’ll take all the advice I can get. I pray for all who have to endure this pain. My heart goes out to all.

In 2017 I broke my left shoulder... Had a reverse shoulder replacement (twice as the first one was put in incorrectly and fell apart) and my left hand started to look like RA - ulnar deviation and then my fingers developed swan neck deformity, inflammation and pain. The doctors thought maybe I had nerve damage in my brachial (sp?) plexus but despite many EMGs. Hand continued to become more and more disfigured but in time it stopped swelling and hurting. Fast forward to June 2025 when I broke my right wrist. It was healing as expected to a point, although it seemed I had more pain than was expected, but after a few months of OT I noticed the ulnar drift. I freaked out thinking OMG I'm about to lose my right hand. I saw the surgeon who wasn't worried and suggested I wear an anti drift brace. Then came the swan neck deformity and, in my ring finger, a boutonniere deformity. Lots of swelling, lots of pain. I totally freaked out - I thought - Oh No! I'm now losing my right hand. My right hand is now looking like my left hand. OT therapist says - that's RA. I see my surgeon (ortho doc) - he says - looks like RA, you need to see a rheumatologist. He sends me to a "Hand Center" 4 hours away. Hand Center doc is an ortho doc - sigh 😮‍💨 he says, looks like RA to me. Sends me to a rheumatologist there. I go to my PCP. He says, no, I don't think that's RA but you need to rule it out. He runs the test for Rheumatoid factor (negative) and auto immune response (negative). EMG for both arms negative. Go to the rheumatologist 4 hours away but I also make an appointment with a rheumatologist in my town who teaches in a medical school and is well respected. Rheumatologist 4 hours away says - well, it's certainly an odd presentation but it sure looks RA. Gives me a script for Methotrexate but the next day I see the rheumatologist in town. Hmmmm looks like RA but doesn't present like RA. My fingers are all swollen and I have pain everytime I try to use it - even to eat. But they're not stiff in the morning - they're at their best in the morning and they swell more and are more painful as the day goes on, and the pain is in my forearm as well as my hand. Right now I'm waiting for 2 more weeks for tests to come in as well as records from the doctor 4 hours away and from the surgeon who set my wrist. I'm depressed because neither of my hands work well and I don't know what is wrong with them. Can anyone relate?

7 months ago, my entire body hurt. Hands feet shoulder fatigue etc. I have RA and Sjogrens. I started HCQ 400mg daily and I’m on a steady weekly dose of MTX 17.5mg. My entire body feels much better. Maybe I’m in remission? But when I wake up, my hands are still a little painful/stiff, but after an hour or so they feel better. Especially as the day goes on. Does this mean I’m in remission since I’m feeling a lot better? Or since I still have some hand pain/stiffness in the morning, does that mean I’m not in remission and maybe I need to up my MTX dose or try something else? Been on these meds for 6-7 months now.

I got diagnosed with RA two months ago and today I found out I also have thyroid autoimmunity.

I’m currently on MTX 15 mg, and after my RA diagnosis I joined a functional nutrition program to try and support my health better. One of the additional tests they suggested is what led to this new diagnosis.

I don’t really know why I’m posting this. Maybe because I feel overwhelmed and strangely alone in it all.

I’m a startup founder trying to keep things afloat in a difficult economy, I’m also a mother of 6 year old, and now my body feels like another full-time responsibility.

Trying to manage diet + health + supplements. Hoping things get better.

I have been diagnosed with RA since I was 19. I was terrified because I saw my mom go through it too (she has RA as well). I kind of ignored it at first. It wasn’t too bad and I was scared to be on medication. I’m 23 now and I went back to a Rheumatologist because I couldn’t ignore it anymore. I just got prescribed MTX and I’m terrified. My mom was on it when I was younger and I just remember her being sick and sad. Every time I try to find someone with a success story on MTX I only find people who call the drug poison or say that they almost died. I’m terrified now and I’m thinking about not picking the medication up and ghosting my Rheumatologist and just accepting that I am going to live life in pain. I don’t want to live a life in pain though. I want to give the drug a try. I have a prescribed anti nausea medication (Promethazine) and I was also told to pick up some folic acid. Is there anything else I should know before taking my first dose? Anything to prevent nausea? Any success stories to keep morale high?

I was talking to a friend of mine who was a cardiologist and is now in pharmaceuticals (more money less work) and I mentioned that I've been put on MTX

He asked why I haven't been put on a biologic and I told him that my rheumatologist said it was gold standard for treating RA and the intent was to give it a good kick in the arse since I'm very mild.

He scoffed and said that MTX only treats the symptoms not the actual disease and that I should ask to be put on Humira since it's off patent so it's cheap and it's a biologic so it will treat RA.

I have a follow up with my RA in a couple of weeks so I will ask but I am now kind of confused and want to know what your knowledge and experiences are.

He's not selling me anything btw he's not able to even if he wanted lol

He's a friend who is trying to help. He did say to ask my rheumatologist for advice.

I 18 ftm am dating girlfriend 17f she has juvenile ra. She has really been struggling the last year and is in a lot of pain. Shes starting methotrexate soon and i have heard it can have nasty side effects. Ive already made her promise to tell me if shes feeling bad so shes not stuck like at an event in pain and we can leave early but what else can i do? I know it causes nausea and obv it will vary from person to person but I'm kind of stressed out and worried i won't be able to help as much. She also has a phobia of vomiting and being nauseous makes her anxious. Anyone have suggestions for support?

Is there a simple way to tell if my hand pain is carpal tunnel or RA? I’ve suspected I had carpal tunnel since I was 18 but was always able to deal with the pain (and never formally diagnosed), but the last 3 or so months I’ve been waking up with extreme hand/finger pain and it’s now affecting my sleep on a daily basis. My RA lab results are negative but doctor hasn’t ruled it out yet. I’m thinking it may still be carpal tunnel, but not sure? Pain is in all fingers other than my thumb, extreme stiffness when waking up. Mildly sore throughout the day.

I type a lot for my job (like that’s my entire job), and being sleep deprived is driving me insane, so hoping to figure out ways to alleviate this sooner than later 😭 i actively see my doctor but appointments are often weeks inbetween without clear answers…

Hi all, my sister was just diagnosed with RA and I was wondering if there's anything that helps you, that I could possibly put together in a little care package? Much love to you all x

Mostly a rant. I feel like every year I get lulled into a false sense of security during the colder months when my RA is mostly just stiff joints and forget that the summer is when things get really bad. We jumped from 50s-60s to the 90s in the last few days and y’all when I tell you I am MISERABLE. I’m waiting for my new biologic to start working so hopefully things get better but like with pain and inflammation combined with the seasonal allergies I feel like I have a weird flu. I also work a somewhat physically intensive outdoors job and it’s our busy season. I hate this. I just feel so exhausted.

I'm currently flaring right now and joints that I've been told are bone-on-bone are particularly painful. Does anyone have something that works for that pain? I have Rx strength voltaren gel that I use on swollen joints. Will that work? I have an appointment in 3 weeks with my doc.

I listened to the podcast Ologies with Alie Ward, episode "Dolorogy (pain) encore with Rachel Zoffness"

She interviews a pain psychologist about chronic pain and ways to treat it. I learnt a lot about pain and how it works and highly recommend it!

I just had a zoom appointment with my rheumatologist for the first time in a couple months and it kind of put a damper on my day.

I haven’t been feeling super well the last couple months so I was ready to tell her about all the symptoms I’ve been tracking but she kinda shut me down the second I told her I wasn’t feeling super great.

She just kinda stopped what I was saying and started talking about how I need to be getting enough sleep, exercising, controlling my stress, and start a sugar free, gluten free diet.

She straight up said “not all pain comes from autoimmune issues a lot of yours seem to be coming from lifestyle issues.”

This hurt me because I’ve been rly trying to eat healthy since my diagnosis 2 years ago (all whole grain, whole foods, mostly everything cooked from scratch, meal planning, all that) but apparently that’s not enough. I work an active job that involves a lot of walking but she dismissed that and said I should “go for 30 minute walks.” I’ve been trying to get good sleep and trying to control my stress but my stress is mostly money/finances related rn so it’s not like I can really escape it.

It’s just made me feel like I’m not trying hard enough (even though I feel like I’m trying really hard) and I’m causing my own pain. I didn’t even get to tell her the symptoms I wanted to because she just ended the appointment after her lecture and told me to schedule a follow up in-person. I feel like I wasn’t able to get a word in. I don’t know. I guess I just needed to vent.

I'll brave it again if I know it will stop at some point. I read that this is a regular side effect and I can power through it if I know it will end shortly, but it was very disheartening to wake up each day with a new weird skin issue and no improvement in symptoms(I'm aware it takes time to reach effectiveness, just complaining). I kept thinking it was just because I'm in a bad flare and that it was a coincidence, but it is pretty clearly linked based on when I take it. I ignored the mild ones on my body and attributed it to me scratching, but my face?? Really??

I don't think it's an allergy since I didn't get any fevers outside of the occasional lowgrade on bad symptom days so I feel guilty stopping it for what is essentially vanity reasons. I stopped it in enough time for the hives/pustles to go down, but did have to get photographed with rashes on my face 😭

I also wanted to add that it isn't normal acneic activity, it's firm papules without pus, singular large hives(like bug bites), and random tiny pustules reminiscent of rosacea, mostly around my mouth and randomly on my neck. I'm down to one singular papule right now, fingers crossed it continues to die down. I'm used to cystic acne and the occasional milia but nothing like that. The hyperpigmentation on my cheeks is odd- it's not my biggest concern since they are symmetrical and just blend in with melasma and freckles, but they are almost grayish in some lights. It's fading since I've been off it for 2 weeks but I know HCQ needs months to reach results and I'm scared of what lasting marks it could leave.

I wish the methotrexate was enough to get me through the week- it hasn't caused me near the side effects compared to my hellish sulfa experience and these stupid skin reactions from HCQ. I have my rheum on thursday and I'm worried to disappoint her in that I haven't taken my meds in 2 weeks now, I didn't message her about it because I feel guilty/embarrassed over it. We had to quit sulfa after only 3ish weeks and that was for pretty dramatic side effects, not a drug that mostly only effected my skin.

DAE experience these side effects? What has helped you?

Hey all, I was diagnosed with RA 3 years ago now and plaquenil and heat packs has mostly kept my pain manageable. The thing that's getting me the most is the fatigue.

I can power through pain but I'm so tired all the time. I get up, get the kids to school, go back home and get back into bed for hours. There's stuff I want to do, that I need to do, but I'm so tired even if I'm not sleeping I'm lying down. I have maybe two hours of energy available. I'm not working right now and I can't even think of going back to work because of the fatigue.

Do you guys have any tips for getting through the fatigue or how to maximize times of energy?

I'm all for going easy on myself when I'm having a flare up but it's just frustrating to have minimal pain (relative to a flare up) and to still not be able to get stuff done cuz I'm a zombie.

I'm at a loss. I thought for sure they would show something. Considering how bad they've gotten. 2024, they were completely fine. Now it feels like there is so much slop in them and they crack a ton and sometimes don't align right when compressing or extending them. Sort of bind/hurt/feel terrible.

Was my 6th visit to this doctor. Only thing positive was the RF factor, just barely. I've been refereed to a pain specialist. Which idk why, because I'm not in pain. I just feel like absolute shit. I guess I'm going to see what they say?

I have a 2nd opinion Rheum next month.

I feel like I have all the symptoms of Lupus, RA, Sjogren's, or a lot of them in the least. But apparently I don't have any of the markers for any of that.