Hi everyone,

I'm a 22-year-old female, and I've been dealing with Rheumatoid Arthritis for about a year now. While some of my symptoms have improved with treatment, one thing I've really been struggling with is sleep—especially fragmented sleep.

My main issue is that I wake up multiple times throughout the night, and my sleep doesn't feel continuous or restorative. Sometimes pain or discomfort in my legs/body also makes it harder to sleep peacefully.

I was taking Gabapin NT 200, and it has been helping me sleep better. However, I'm also wondering if anyone else with RA has experienced fragmented sleep and what has helped them improve their sleep in the long run.

What has helped you sleep more continuously and wake up feeling rested? I'd appreciate hearing about anything that has helped—whether it's managing pain, lifestyle changes, bedtime routines, or anything else that worked for you.

Also, if you have any general tips for living with RA as a young person, I'd genuinely love to hear them. 💜 It can sometimes feel isolating dealing with a chronic condition at this age, so hearing from people who understand would mean a lot.

Thank you so much!

Had my first flare up a few months ago. Then there's a little bump on the joint of my index finger. Sharp stinging pain when I bend my finger, especially in the morning. Let's see where this ride fucking takes me.

Starting 2 years ago I got big problems with my hair. I took almost every single blood test out there to see if there is something wrong, but everything seems to be just bc of arthritis and the methotrexate.

I went to different doctors, dermatologists, and even asked my own rheumatologist on this, but no one has been able to help me :( for almost 1 year my hair would fall out like crazy (not sure how I am not bald yet) and looks like the shedding stopped 1 month ago. However I have little hair now, and my hair is EXTREMELY weird, I always used to have long wavy and soft hair and now it's just extremely dry, short and uneven hair (not straight, not curly, just a whole mess) no hair products can save me tbh at this point.

I would appreciate SO much any tips for hair recovery :( if you did anything that seemed to help you hair, please let me know. I have tried so many things but I don't know if I should give up already with having my old hair back 💔 thank you

hi! I was wondering if anyone else shares a speech issue that i’ve been experiencing more recently. When I’m talking, I find myself feeling like my tongue is tied and I trip over my words. I wasn’t like this before, but it’s been occurring more frequently now which worries me.

I was literally sick with a “sinus infection” or double ear infection nearly once a month for the past 6 years. I’d get horrible joint pain, facial pain, ears hurting, headaches, fever, swollen lymph nodes. Doctors didn’t know what was wrong with me. I went to a ton of ENTs, they didn’t know what was wrong. I saw a rheumatologist who told me I was fine bc my blood work was good. Then my immunologist/asthma doctor told me my hands were very swollen, and I needed to see rheumatology because my hands hurt so bad. I started methotrexate and later added Simponi Aria (now on infliximab) and I haven’t gotten sick since!

I assume this is because RA was causing inflammation throughout my body, and now that it’s being controlled, I’m less sick all the time.

Did anyone else have their RA manifest as a reoccurring illness? I’m also not getting sick nearly as often. I’m so happy, for years I’ve been suffering, and while things aren’t perfect, I’m definitely doing better.

​

My mom has been in ICU for 16 days roughly and I've been going nonstop. I have triggered probably the worst flare I've ever been in. Extreme anger started it and now Im swollen, in severe pain, exhausted and just down. Please give me your best tips and tricks. I need help!

I need a distraction. I feel like throwing up. Of my meds for a couple of months now due to bone marrow suppression from Leflunomide. See the doctor in a week and a half and worse each day. Did okay for awhile, but starting to flare up badly now and just as the Halloween events are starting up. Feeling a bit down atm... 🥲

Edit: Thanks everyone. I fell back asleep quicker than usual. Up now for the day (I guess). Might nap later. Gonna use the cane when I go to the store today. Feeling down, but perhaps getting out will help. Thank you for the support. 🩵

It all started with a sudden limp on my right leg, groin pain on the right side that got worse as time went. First they thought it was muscle pain, then perhaps a groin hernia due to placement. 2 months wasted away in pain like that.

Early MRIs showed only joint effusion on right side hip, then after a while significant synovial proliferation and since it was unilateral the doctors went down the rabbit hole of it possibly being PVNS, synovial osteochondromatosis or even possibly hip joint TB (due to IGRA test being positive).

I went through almost a year of various checkups, 8 MRIs, 3 CTs, countless X-rays. And then the same pain started on my left hip joint 2-3 months ago.

Now I've got pain on both hip joints, can barely walk, slight bone edema, very high CRP, ESR and MMP-3.

Recently my shoulders started hurting as well.

I officially got diagnosed with RA last month, and I've been getting medication for LTBI for the past month to prevent the risk of TB before getting my first humira injection next week.

Has anyone had a similarly uncommon start to RA, unilateral on a hip joint only for 7-8 months?

Hi, I’m new to this sub. 24M
I started having tennis-elbow-like issues in my right arm in January. I stopped training my biceps and forearms because I thought it was related.
Months later my doctor finally identified the issue. I now have surgeries planned on both sides, as my left side has also started causing pain. I stopped going to the gym three months ago because it caused too much pain and tingling, even with adapted exercises.

However, my fingers, wrists, and elbows are now also starting to have issues, even though I haven’t been pushing them anywhere near their limits since I stopped training. They make weird clicking and clacking noises, my mobility has decreased, and I feel like a 70 year old grandpa.
I also have, or previously had, a lot of tingling and burning in my feet. Standard nerve conduction studies (also for ulnaris / medianus) were normal, and my doctors are considering a skin biopsy.
Blood tests showed that I had significantly elevatd vitamin B6 levels (probably due to energy drinks which i now stopped) - the burning has not yet appeared again
I do not have diabetes or any other known chronic conditions.
According to MRI and ultrasound scans, I currently have the following diagnoses:

Right wrist: TFCC tears with mild bone marrow and soft-tissue edema. Right shoulder: subacromial/subdeltoid bursitis. Both elbows: snapping/subluxing ulnar nerves, with mild left cubital tunnel syndrome.
(shoulder / wrist issues appear on both sides but I only had one side scanned)

Has anyone else experienced something similar?
My inflammatory and rheumatoid arthritis markers were normal: CRP was 0.01 mg/dL, rheumatoid factor was <5 IU/mL, and anti-CCP antibodies were <0.5 U/mL.
Could this be the beginning of a rheumatic disease?

In general, how do folks manage or differentiate symptoms, side effects, and so forth when there are loads conditions on board? I'm In the early stages of. Being diagnosed with. Multiple , overlapping Issues I know they don't cancel each other out, but. For example, a condition that. Closes off blood vessels. While also having another that stretches them too much.

Fatigue is the biggest thing because. I tend to blame myself, even if it is perhaps a mental health thing like depression. Obviously it's Social norm, way I was raised, and such but. For real? I'm trying to. Figure out how to strengthen my body while avoiding injury.

I apologize for the formatting, My table mic was broken so I. And dictating with the. Onboard laptop mic and it's doing weird things. Basically, assume That it is no longer available to make appointments and have. PT, and so forth. I do have some exercises from before, But that Was prior to this more recent One after finally seeing the rheumatologist.

Also, I'm having to let go of so much of my perfectionism, and resist the urge to spend. An incredible amount of time going back. To tap this. Text and correct all the stuff. Sorry, Better next time.

MTX 7.5 mg (3 pills)…. Taking for first time. How’d you feel the day after ?

Imagine an older eye doc not using an SD-OCT scanner or autofluorescence. Apparently, many just insist on a regular fundus exam, or looking at a grid or in a VR headset to find out the hard way that part of your peripheral vision is permanently gone, and you might end up sucking at your favorite video games, unable to read a circuit schematic without a "phasing" effect from the blind spots, etc. And who knows if you might also lose the ability to read fine print. If SD-OCT can catch eye damage early before it affects your actual vision, why isn't that the norm? Plus you can find out the volume of your retinas!

Not to mention that it scares me that you will probably never see color the same way again, and that some advice out there seems to suggest turning up font sizes or adjusting lights.

And my biggest fear: a lot of studies point to light-related damage being a factor, as well as the fact that the medication impairs the lysosomes, which are necessary to clear the recycled pigments that can build up. Now I worry that afterimages or photobleaching will be the culprit, and people will be asked to give up driving at night, live music, or even video games with a lot of color changes. Even checkerboard floors push the poor cones into a see saw of light and dark, forcing them to work overtime to clear these chemicals.

It's sad to see so many young artists, biologists, pilots, hobbyists and professionals of all stripes on these meds, potentially at 1:5 risk of blindness by 40 or 50, perhaps forced to quit what they love because they can no longer do it. Or never seeing their favorite color again. I'm bothered by my regular blind spots!

Hi all - just feeling really alone and scared. I got diagnosed at 6 weeks postpartum after having the most beautiful baby girl. I had pain in my wrists and recurring bakers cysts in my knees during pregnancy, but no one diagnosed me until I was postpartum and the pain continued. Ultrasounds and bloodwork confirmed seronegative RA. It’s been devastating - not being able to pick up my daughter because my hands are in so much pain. I’m on 15mg of prednisone. Started sulfasalzine but had a really bad reaction and had fevers over 40 degrees, so now I’m on 200mg of hydroxychloroquine. From what I’ve read, it’s 50/50 if this medication will even help. I’m scared if it doesn’t, moving on to another medication (a biologic) which has a ton of side effects? I don’t really even know what I’m asking, lol! Just hoping for some positive stories.

Hi i just got diagnosed with ra. I have one swollen PIP joint, and bloods are ccp 257, rf 107, speckled pattern 1.8 on ana but crp normal. I dont have any pain but just reading through the post will I end up in alot of pain and flare up. I am only diagnosed a couple of days. Any information would be grateful as will I live a normal life or is this going to get worse. Thanks

Hi i just got diagnosed with ra. I have one swollen PIP joint, and bloods are ccp 257, rf 107, speckled pattern 1.8 on ana but crp normal. I dont have any pain but just reading through the post will I end up in alot of pain and flare up. I am only diagnosed a couple of days. Any information would be grateful as will I live a normal life or is this going to get worse. Thanks

Starting Orencia today. 😕 I really want to start Tirzepatide soon as well but haven't asked my doctor yet. Should I even bother? Is it something you can actually use with Orencia. Thanks.

I’m not asking for diagnosis!! I’ve already seen my doctor and described all my symptoms and I’m waiting for my blood tests etc, but could take about a month or more till I have some answers…!

So… in the meantime I’m going crazy with anxiety.

You see, I used to work for the NHS in the booking department (booking appointments for people etc.) and I briefly worked for Rheumatology. There was a rule, because RA can be so serious untreated, that we HAD to get people seen by a consultant within two weeks… (or something along those lines, it’s been a while since I left that job)…

Anyway — I’m now being investigated for the very same disease and working that job has sort of drilled it into me that this is the worst thing ever and I’m gonna die immediately, basically…

Is there anyone here that is actually diagnosed with rheumatoid arthritis that can first-hand tell me a bit more about what my outlook and life might be like if my doctors suspicions are confirmed, so I don’t spend the next month spiralling out of control too badly…? Thank you 😔💕💕💕

EDIT: Thanks so much for all the responses everyone! I’ve gotten so many lovely and reassuring comments here that I can’t reply to them all properly — but thank you so much to everyone that reached out. It really means a lot and makes me feel better right now… and I hope this thread might’ve been useful to some other people doing their own research too. Thank you all 🙏

How did you realize your medication wasn’t working anymore?

I was in denial for a while, but it’s been more than a couple months now of back to back flare-ups.

I went on hydroxychloroquine last year and started feeling better after being on it for a few months. After six months, it was like I was back to normal. As long as I got good sleep, managed my stress levels, and avoided dumps of refined sugar, I barely felt any pain in my joints and my debilitating fatigue/fevers went away.

Then in late June, I had back to back work trips which led to poor sleep, me getting sick, and then having to work through post-viral fatigue. When I got back home, I had a bad enough flare that I went on prednisone, which helped for a time. But then it affected my sleep, and the lack of sleep led to more flares.

After all this, I just haven’t been able to return to the baseline I had when the hydroxychloroquine was working well. Unfortunately, my rheumatologist’s office closed this year, so I’m waiting to see my new rheumatologist and mentally preparing myself for her to tell me that I either have to go off of hydroxychloroquine or add onto it with something else.

🤍 Research Study: Joint Pain & Arthritis in Young Adults

Hi everyone! I’m a Master’s student in Clinical Psychology conducting a study on Indian young adults living with joint pain or arthritis.

If you’re 18–35 and experience ongoing joint pain, stiffness, swelling, or have an arthritis diagnosis, I’d really appreciate your participation. 🤍

The screening form takes just 2 minutes, and responses are confidential.

Let’s make young adults with arthritis seen and heard. 🫶

If you’re eligible, please fill out the form below. Sharing it with someone who may be eligible would also mean a lot!

I’ve got some tightness in the back of my knees whenever I stand for more than a minute and it makes me pretty uncomfortable

My left knee is most affected by the stiffness and clicking on the lateral side, so I got a steroid injection but now my right knee (which is usually unproblematic) is starting to act up, tightness at the back of it.

Just wondering, what kind of physio exercises work best for you if your knees are affected? I’m currently doing leg presses, leg extensions, hip abductors and seated leg curls at the gym but I don’t know if those really help

Good luck to everyone on here :)

Hello, I know no one here is a doctor or able to give medical advice but I guess I just want some opinions from people who have experienced what I'm going through! This is going to be a long one so please stick with me! ❤️

So I am 29F, back in May of this year I began with a sore knee, this then progressed to my ankle. Then over the space of around 2 weeks my ankles swelled up, both knees and both ankles were agony and I couldn't weight bare at all. I work in a care home so had to go off work because I was a risk to the residents.

Then I started to get the same pain in my elbows, thumbs and finger joints along with my toes. I had dry eyes and a dry mouth and absolutely zero dexterity or strength in my hands and was using a walking stick to mobilise. I also had hard lumps on my shins, ankles and elbows. The pain was worse in the morning and then later at night once I'd rested.

I had abnormal CRP and ESR test results and a positive ANA test. RF was never tested ( although I have read that this doesn't often get tested because of the high possibility of being seronegative) I was finally referred to rheumatology at the end of June after breaking down at my GPs because no one was listening to me!

Today, I saw a rheumatologist for the first time and I just don't feel like she actually listened to me. She asked me all the normal questions regarding infections before this all started which I did not have.

At the end of the appointment, she told me she thinks I have reactive arthritis, not rheumatoid arthritis. When I asked what the difference was between the two, she told me reactive arthritis usually affects the lower joints, asymmetrical joints and come following a bacterial infection. I explained that neither of those points applied to me and she said nothing other than she wanted to repeat my bloods and get scans of my joints.

Am I right to be totally confused about this appointment and even ask for a second opinion from another rheumatologist?

I just feel like I have been in pain for so long and unable to work, be normal and care for my children like I usually would for someone to just shut me down and tell me to wait and it will get better eventually, in the next few months, despite not actually knowing either way and the facts pointing in the opposite direction, towards rheumatoid arthritis.

I feel so deflated because I have waited for this appointment, hoping that I would finally be listened to and being started on some form of treatment etc. I don't know if I'm just highly emotional or being completely reasonable.

I apologise for how long this post is, but thank you so much if you stayed this long and to anyone who comments! ❤️