Hello, I’m sorry this is going to be long and ranty. I was diagnosed with JIA years ago, chronic knee, back, shoulder and hand joint pain. I had a flare up and 4 of my finger joints were swollen. I’ve been in pain since age 11. I was put on weekly Enbrel shots with pain meds for a couple of years. I had to switch hospitals and my new rhuem told me that I didn’t have JIA and said it was fibromyalgia. Completely brushed me off and sent me home samples of a new drug. She didn’t even pull my records from the other hospital. I felt completely unheard and stopped going.

Years later my symptoms are completely unmanageable. Doctors still say, “you’re healthy just eat better.” I have less mobility in my left hand and visible swelling on my ring finger. My left shoulder and upper back are at a constant 6/10 pain and physical therapy is not helping. I have new symptoms that have persisted for a few years now.

1. Entire left side of body is in constant pain. Numbness, tingles, it goes to sleep if I’m sitting on the toilet for a few minutes and when driving. In the last month it’s travelled to my head. Tingles and face numbness. It feels like my face is drooping? I cannot sleep on that side or I wake up numb and my shoulder feels “caught”. I have to manually unstick it.

2. Rashes. I never used to be sensitive to sun. 5 minutes of sun and my legs get itchy, burn and become red with bumps. I now have a rash on my nose and cheeks only. The skin is slightly rougher. Face rash is constant even without sun but sun makes it more noticeable.

3. Asthma has gotten worse. I’ve had pneumonia twice. My chest cracks and catches and is super painful.

4. Left side of Back went out for the first time ever. My rib cracked out of place and it took a week to subside.

5. I’m hyper mobile in my shoulders, knees, hips, elbows and toes. My elbows are achy just lifting them.

6. Allergies are worse.

7. Headaches and vision in right eye is impaired. Driving at night is stress inducing. Everything blurs and my sensitivity to artificial light is high. Lights in the house give me headaches and prefer being in the dark. Pressure behind eyes and dry eyes. I use artificial tears.

8. I used to have great arm strength. I can’t even open jars anymore. I’m a massage therapist and my pressure is so different now. I can’t carry groceries bags without having to drop them.

9. Tired. ALL THE TIME. I have ADHD and my meds don’t help with it. I want to nap constantly.

I feel like an old person. I have fantasies about scraping and digging in my skin to relieve pain.

I feel lost. I walk dogs and massage. I love it but my body doesn’t. Honestly wondering if something else is going on.

Hi everyone,

Had a very nervous situation, today i left my fridge not fully closed when left for an entire day trip. I had 7 Adalimumab Humira doses in it. When got back home I noticed everything including Humira got pretty warmer in the open fridge.

I closed the fridge back to cool it back down ASAP. Are the syringes ruined now? This was my supply for next 3 months, so I hope I dont die when injecting them now.

For the past 6 months have had a variety of weird symptoms: fatigue, chest pain, nerve sensations, headaches, low grade fever, dry eyes and swelling and joint pain in my fingers and now elbows and finger tips. I’ve seen a neurologist, ENT, cardiologist who all found no concerns. Neurologist referred me to a rheumatologist where I finally felt like I was going to get answers for my ever changing but consistent symptoms. Bloodwork is all normal so far, but my response to NSAIDs and a taperpak of methylprednisolone indicts something inflammatory. Rheum PA sent me for an ultrasound of hand (they were not actively swelling or hurting) and it came back normal. They told me, “it’s probably fibromyalgia, and we don’t treat that.”

I am at a loss. I expected them to be more investigative or at least offer another round of steroids. Nothing. I am certain my issue is not fibro, since my pain is localized to my joints and I have visible swelling and a fever. My primary doctor will do tests if I push for them, but they think I am overly anxious and want me to get on an SSRI or duloxetine. I have 2 aunts with lupus, and immediate family members with hashimotos and celiacs. I am not being a hypochondriac.

I am going to get a second opinion, but am I right think that my experience was not normal? To be dismissed based on 1 ultrasound and 2 month old labwork? Any insight is appreciated.

my gf (17) has mild to severe RA for almost a year now, she just have started treatment with methotrexate. reading all posts on this sub scare me to death... I'm very worried

are there any people without unbearable pain, brain fog, tiredness, merged joints and everything? just living physically active life with some pain from time to time? is there hope or is it like a sinking ship? please be realistic and don't hold back.

Curious to hear stories of folks who have been diagnosed with RA and who love running. Are you still able to participate in the sport? 💕

I did post about my distended belly a bit ago but now questioning this new drug. I just started taking it about 2 weeks ago. I recently had a UTI and thought I had a bad reaction (bad nausea and headache) to the antibiotic which I can have. But now I’m wondering if it’s the sulfa. Upset stomach just about all the time. Anybody else? Thanks

Any recommendations for a comfortable steering wheel cover? I'm made a 2 hour drive yesterday and my hands were killing me. I've got a 5 hour drive next week and I'm dreading it.

I've had RA for 10 years. According to my labs it is well controlled, whatever that is supposed to mean lol. I take a DMARD and a Biologic. I also have DDD, OA and diabetes. I am so tired! I feel like I can't get enough done in a day. I make myself rest in between tasks. I had to stop working about 4 years ago. I'm not sure I have a point just frustrated I guess. I hope everyone is well.

Just diagnosed with bone erosion and "advanced/severe osteoarthritis changes", on top of prior RA and Fibromyalgia diagnosis.

What treatment options are there? I can really feel it in my hands and wrists. Any precautions I should take? It's far worse in my dominant side, so I imagine it's a use issue.

Thank you.

Honestly do you think in the next 20 years we will see a break through in our treatment?

Or should I except that I’m gonna be like this for life and on harmful meds.

First appointment on Wednesday. Any insight on what to expect? Do I start medication automatically?

hello! i’ve been on MTX for two years now and it’s pretty okay, but i still have significant stiffness and inflammation so my doc is moving forward with incorporating a biologic and i’m excited but also nervous.

from what i understand it makes you significantly more immunocompromised and MTX has already been making it easy for me to catch illnesses. so i just wanted to see what everyone else does to help prevent from getting sick. i’m prepared to mask in public but my partner is in public and at schools a lot and idk if he would be okay or able to be masking constantly.

also a lot of my family believes they’re stronger than needing to mask and i would rather not get into it with them or try to fight them to mask for me. i’m worried i’m just gonna get sick a lot and have to deal with it. how does everyone else deal with it?

I'm a 30yoF who's getting worked up with a rheum right now - so far labs are normal except for ESR of 55. X-rays are normal. Vague knee/ankle pain for 10+ years, mild knee swelling infrequently. Hand pain began 1-2 years ago, worsening. Mild stiffness in hands but no redness or swelling.

Two symptoms I definitely don't have are fatigue or brain fog, and my pain is overall mild and controlled with no NSAIDs.

Is there anyone here who has a RA diagnosis with NO fatigue? Or developed fatigue later on?

I am 60, and was diagnosed a few weeks ago after 6 months of the god awful pain and exhaustion. Idk about the positive negitive stuff cuz my doc is literally on the opposite coast. I just finished a course of Prednisone. So my immune system is reduced to zero, right? So if I go out in s crowd I should probably wear a mask? Are other people susceptible because of me, or is the only infection danger to me? Im waiting for my Methotrexate script to arrive to start but need to read up on what to expect. The doc also said daily folic acid and ZERO alcohol. Its mind boggling!

Hey guys! My wife was diagnosed with RA around 3 years ago. Started methotrexate and HCQs (both oral) and she was totally fine for the first year and a half or so ever since she started the meds. The last 6 months have been horrible though especially with the wrist and fingers, constant inflammation and swellings - the rheumatologist regularly takes blood tests to make sure everything looks okay, which it is.

Are flareups common even though all the blood work appears normal? What advice do you have for this? Sometimes her hand is so inflamed she can't even lift a jug of water for herself and her quality of life is really dropping.

Would you suggest we see another rheumatologist for a better more recent prescription? Any suggestions would be welcome if you know any amazing doctor that offers zoom calls.

Also, anyone here have better results with SC methotrexate over the oral route?

Thanks! And sorry for the long post Honestly any help/advice would be really appreciated!

So I almost certainly have RA; I had juvenile RA from 13-18 years old before it went into remission, and am now having symptoms in my 30s. It's likely been active for the last few years but I kept brushing it off as being "old" and out of shape, but symptoms recently got severe enough to see my GP and the blood test results strongly support an RA diagnosis (very high CRP, sed rate, and platelets).

My GP referred me to a rheumatology practice (which, funny enough, is owned by the doctor who diagnosed and treated my JRA). They didn't have an appointment available until the end of June, so I've been keeping track of symptoms and pain levels while I wait. I've noticed a pattern that never happened when I was a kid, so I was wondering if it might be a known thing or if there's a term for it that might be helpful for my notes.

Basically, I'm having this weird cycle happen over and over for about 4 months now. I'll have a day where I break out in hives all over my body; my skin turns bright red and nothing really helps with the burning and itching sensations. For the next 6 days, I'll have unrelenting severe pain in virtually all my joints at once (my 10 is the pain I experienced from appendicitis and I would put this at a 9). Nothing relieves the pain at all, I'm so stiff I can't even type (let alone walk), and there's no position I can rest in because everything aggravates one joint or another. After those 6 days, it tapers off some and the pain moves around, only affecting a few joints at once. That lasts until the next time I get the hives and it all starts over again. This is about a 2-week cycle and I can't think of anything external that could possibly be triggering it.

I've tried finding info on this but I'm having a hard time coming up search terms specific enough to bring up relevant results. Has anyone else experienced this, or does anyone know if there's a word for it? I just want to have the best info I can to make the most of my (eventual) rheumatologist appointment.

I read it was a side effect, I thought I was just sick but it only happened when I laid down for bed. I skipped a week and it did eventually clear up, but is this going to keep happening?

I recently started having a lot of anxiety doing my MTX injection so my rheum switched me to the oral. I’ve only done the oral dose once and I know it has a lower efficacy than the injection but I’ve had a lot of swelling, pain and stiffness that was almost gone with the injection. Has anyone made this switch? If so, how did it affect you? Just curious if anyone else has had this experience.

Been in n my feet for a prolong period of time and I know have moderate knee and ankle pain, as well as a mild fever and chills. It isn’t a cold or anything I haven’t been around anyone, the burning pain is making me think it’s inflammation and a flare up?

Anyone else get this?

So I was first diagnosed in March of 2023 with positive Rheumatoid arthritis was put on methotrexate which I stayed on with chloroquine until I had to change due to vomiting I then tried sulfasalazine which didn't work and now I'm on leflunomide 20mg with chloroquine and exinef 90 mg I am kind of in remission but the leflunomide isn't really working it's best so hopefully getting new meds soon I've had a bad flare when I tried sulfasalazine which caused severe pain in my hips rheumatologist sent me for an MRI in both my hips my MRI showed no signs of damage or inflammation except a labrum tear in both my hips in the cartilage . Now I have never done sport I am very young so it's not due to age or traumatic injury so I'm left with osteoarthritis or rheumatoid arthritis as a cause . Has anyone gotten the same diagnosis and what treatment helped ? I have so many questions any help would be great!

I have graves disease (autoimmune, thyroid) and developing seropositive RA, which is two autoimmune diseases - they've both been flaring up for the past few months and I am unbelievably exhausted and can hardly think or hold phone calls. It's especially awful because I'm in the middle of final exams at the moment 🥲

Does anyone else get awful exhaustion and brain fog during flares? Just wondering if it's related to my AI conditions or if I should be looking for other factors :)

I was diagnosed about a year ago, 50 F I have struggled with my weight since 2012. I have a big belly. I’m doing better with my eating; it’s my choices not how much I eat. I’m wondering if my RA and/or my medication Is causing my belly to be extended. I take a bi weekly methotrexate injection, daily NSAID, and just started sulfasalazine. Anybody have anything similar? Thank you

Started having rheumatoid arthritis pain in elementary school. In college I drank once every other week (got super drunk like 4 times a year) for about two years. Every single time I drank, even just a beer my muscles would burn. I thought this was the “warm feeling” people talked about when they drank. I ended up stopping drinking all together after college because it hurt my body so bad.

Yesterday I had half a glass of white wine, my first alcohol in 4 years. My body BURNS. Like my muscles ache and I feel stiff.

Is this common with ra? Or is there something else I should look into?

Anyone here have a vaginal overgrowth of group strep b? Or struggle with burning rawness in the vagina? Disruptive bacteria has been taking over my vaginal biome and I’m guessing it has something to do with being on Cimzia and having RA/auto immune disease.

My rheumatologist says it’s RA but he said it’s not too bad (and honestly he doesn’t seem confident). Yet I’ve tried luflominide and I’m now trying sulfasalazine and nothing (waiting to see if humira is approved). Lefl did nada (literally nothing) and sulfa I’m on day three and same thing. I can’t take steroids because of my type 1 diabetes.

But lately I’ve been thinking…maybe it’s not RA at all. Though I’m not sure what else it could be. Right now my left knee and right foot are killing me (can’t walk up stairs and I’m hobbling). And my neck. And my thumbs. Tomorrow it might be somewhere else (legs will start to feel better and it’ll be in my hands).

Could it be nerve pain/damage? Would nerve pain jump around like this?

I know none of you are doctors and I just need to trust the process and just keep going but man is the pain incredible. And the process is taking forever.

Got a solumedrol shot, had two pretty good days and a sudden descent into extreme flare. My hands and feet are swollen, skin is splitting on my feet. Unfortunately I can't tolerate oral steroids. I cry or experience psychosis. Is it common to have a rebound reaction? I'm feeling very tired and sore and emotional. Tia for your input.

What criteria/symptoms confirmed diagnosis with your doctor if you had normal labs? (Normal ESR, RA, CRP, WBC etc)

So! Best friends wedding is coming up next year, we've both agreed to lose a few by the time her hen do rolls around. Problem is I've got RA so the thought is a bit terrifying to me. Best friend is also very self conscious about her weight and would rather work out from home rather than going to a gym just yet.

My question is what would be some good beginner exercises we could do from home before working our way up to anything more? I've been given some knee strengthening exercises by my physio (step up and back down without slamming my foot until my knee begins to hurt then switch leg) so I've got that one so far, also managed to do a wall sit for 30secs, 20 sit ups and 10 push ups while on my knees, is there anything else I can add to this and recommend to her?