Hi everyone 💛

We're USYD medical science students working on a project to make the move from paediatric to adult care easier for young people with juvenile arthritis. Some young people get lost during that handover, and we want to help change that.

If you had JA as a child, or have a child with JA, we'd love to hear about your experience. You can message us privately or send us an email at [djan0167@uni.sydney.edu.au](mailto:djan0167@uni.sydney.edu.au) and we'll send through a few short questions to answer in your own time. It's completely voluntary, and you can skip anything you'd rather not answer.

We really want to understand the lived experiences of individuals with JIA so that we can curate a solution that helps ease the stress and builds the confidence needed to be in charge of your own care when moving from paediatric to adult care. Any insight is valuable insight!

Thank you 💛

24f. Started getting chronic mild joint pain for a few years but it wasn’t too bad until this year. I went from being okay to staying in bed for two weeks due to bad joint pain.

Knees, lower back, ankles, elbows started hurting a lot, especially after waking up. Sometimes I would get really bad, sharp flares of pain in some particular big joint like my hip or knee. These would last for a few days and I would have trouble moving. In the last few months, I have mostly limped around my house due to joint pain. I believed that it was due to less physical activity but it became unbearable after a while, to the point that I couldn’t get out of bed without taking double doses of pain meds.

My ANA and ANCA was negative when I was tested three years back. I do have family history of seronegative conditions however. ESR has generally stayed 20+ for most of my adult life. My pain has been especially bad lately and CRP came out to be 30. No infections or sickness. I went to a rheum but they did not take me seriously due to my age perhaps? Did not want to test for anything.

Anyways the joint pain kept getting worse by the day and I was having trouble doing basic tasks. I felt like a fraud because the pain was so bad but no one believed me.

Then my HLA-B27 pcr test came back positive. Inflammatory markers in blood are also high. I know that this doesn’t confirm anything but it’s a start and I think that I may be taken seriously FINALLY.

I still feel like an idiot though. What do I do now? How do I bring this up without sounding stupid? I am very nervous about this because I have been dismissed so many times. What is next? How do I go about this? What tests can I ask for to figure out the next steps? I don’t want to be dismissed again.

My pain is in my knees, elbows, neck, ankles (especially ankles). Lower back hurts bad if I stand straight for a while(present since childhood but worse now). Pain starts after waking up, dulls after a bit of movement, and then flares up again if I sit in the same place for too long. My joints crack loudly all day with simple movements. Frequent gi issues too. Joints are also hypermobile but they only started hurting very badly this year onwards. Also have mild genu valgum since childhood.

I still feel like I may be imagining all this because doctors don’t seem to take it seriously when I mention joint pain.

What do I do now? What could this be? I really need to know how to proceed.

I’m 17 years old and ever since last December, I’ve had pain and discomfort in my arms and hands that my GP thinks is arthritis. He set me up with an appointment to see a rheumatologist in December, but I’m worried that it’s too far away from now and that my joints could be permanently damaged by then. Should I be worried about this?

Help! This started happening about a week and a half ago. My right (&dominant) hand was swollen upon waking up. I have had pain at my joints and in between my index and middle finger. I have also had swelling throughout the whole hand. I haven’t been able to wear rings for this time due to it (including my smart ring). This is only occurring on my right hand. Swelling, pain (ache & sharp), redness at times. I have gotten compression gloves and have begun to wear one on this hand when the pain is worse.

I was just diagnosed with Small Fiber Neuropathy and Dysautonomia this year. I do also have arthritis. I was checked for RA and lupus a few years ago but those had come back negative. I’m not sure if that has changed.

I thought I would post something in here as I’m a long time listener first time caller. I’m a 50 year-old male 5’10” tall 170 pounds. I’ve played tennis my entire life and over the last two or three year my right hip had become so sore with arthritis that getting to play tennis was next to impossible. With that said, the doctor said the next step would be to have my hip replaced. To be honest, I had no desire to go through that nightmare. I had read a ton of anecdotal stories about people getting on GLP one and finding a great improvement in their joint pain and overall inflammation. With that said, I started on .25 about three weeks ago and over the last two weeks my pain has gone from an 8 to about a 2 and I’m back to playing tennis, putting on my shoes and socks without pain and frankly living a much more comfortable life than I was prior. I had no need to lose any weight because I’m in pretty good shape, but it’s also really helped me eat a much more healthy diet without having to force myself to stay away from junk. Is it a coincidence? It might possibly be but the change has been so radical that it’s hard not to connect the two things together.

I am finding this is one big barrier to coping with arthritis in my neck. I understand this is a serious condition and I was able to get my levels from age 30 Level 4 to age 34 Level 3.

Now, I am finding it is hard to feel, like the whole numbness in L4 situation and waiting on MRI results. On the plus side, using magnesium and higher dose of Vitamin D3 at 2500 IU very effective.

I just feel like when the weather shifts around like in the dead of winter January to March and that pressure shifts, I am not made to have a lot of stamina. How do you cope? For reference, I am fairly thin and try to be active.

I get joint pains if I eat meat or seafood. I've been managing this by significantly reduce meant/seafood intake. Limiting meat/seafood intake had been working fine for many years.

However, in January 2026 I started to get pain outside my right knee after going down a mountain almost non-stop for 4 hours. The pain lingered for months now. I can no longer go down hills or slopes without pain.

People online suggested that it's ITBS so stretches should help. I tried but it didn't fix it

Worse even I started to feel knee stiffness whenever I walked too longer. It started a couple of weeks after I started to walk 10000 steps a day. It continued even when I reduced my walking steps to 8000 or even 6000.

The pain continues even if I don't eat meat. It sucks.

Does anyone else have similar experiences?

I'm happy to report the below:

The issue is almost gone completely now. Yeh! :D I tried all the physiotherapy tips for 7 months. It helped a little bit but not much. In the end it got worse since my knees started to feel rusty any time I walked too long (up to 1000 steps) or went up or down stairs. Some suggested that magnesium supplement might help. So I started to take it but still the issue persisted.

One day I consulted Gemini about starting to feel dizzy before the end of my 18 hr fasting. Gemini suggested that I might be short of potassium since my kidneys have been releasing potassiums during the fasting. So I started to take a pinch of heart salt in my morning black coffee every day, as suggested by Gemini.

Immediately not only my diziness went away but also my knee discomfort started to improve. Apparently magnesium and potassium work together to strengthen leg muscles which are critical to support knees.

It's been a month now and my knees are totally fine again. I still get a tiny and short pain outside my right knee occassionaly but it's no longer bothering me that much. I can walk downstairs or down slope without pain most of the time, thanks to Gemini AI. It's my go to consultant for health issues now.

Is there any way to help improve this or slow this process down? I feel like my joints are going one by one - and very worried

i was diagnosed with arthritis at 10
i woke up one day and my left knee didnt allow me to walk i tried everything but it didnt work
a few months later i got diagnoised with arthirits and two years later it almost vanished but came back in my ankle n hip along with some backpain idk why but here i am at the age of 15 watching my doctors prepare for another iacs injection which turns out to be streiod
atp i want to just belive that its all a big lie and i dont have arthiritis at all those injections are PAINFUL to take not to mention that u cant do anything with ur legs for one or two days

Hello! About 8 months ago, I went in for an emergency doctor’s appointment because my whole body/joints were flaring up. Especially in my knees, ankles, and hands. It turned out to be a form of arthritis, but I never got a follow up diagnosis (my healthcare never reached out and when I called, they claimed they "didn't" have any result of this appointment), just prescribed naproxen for the inflammation. I am 19f and living with this condition has taken a pretty big toll on me. Doing any physical activity causes me so much pain. Even sitting down in a certain position makes my knees or hips lock in a weird way. I am also a student, so having to write a lot for my papers is making my hands/fingers be in a lot of pain again. I just wanted to ask if anyone has tips or tricks to ease down the inflammation? Since I've been on and off with the meds I was prescribed, I've also gained a lot of weight. I'm not sure if they're correlated or not, but if anyone has advice on how to go back to healthy lifestyle, that would be really appreciated!!

Im getting to the end of what I can tolerate for this journey of pain. I was doing my best to recover from my eating disorder, and about a year and a half ago I started getting what Google said sounds like gout pains??? Anyway it went away and I got urinary troubles and that was more serious. been dealing with that since and the pain kept coming back randomly and it was super debilitating at times.

I would get flu like symptoms I was so sore all over I could barely walk, my body feels like I’m moving in slow motion, and I would get these hard red lumps on my joints and when they would leave they would leave bruises. I have them on fingers, toes, knees, ankles. But when they go away other than the crappy pictures of a slightly red lump or the bruise, there’s no evidence anything ever happened.

Uric acid normal, I’ve now had x rays, ultrasound, buttloads of bloodwork and been screened for every autoimmune disease it seems. I have really bad brain fog, apathy, fatigue and the pain increases when I eat sugar, carbs etc. you know anything that tastes good. I was convinced I had Gout and maybe unseen blood sugar problems, but because I have eczema they are ruling out psoriatic arthritis. The rheumatology department at the hospital is concerned, and also very informative. The rheumatologist I saw for my ultrasound was aggressively dismissive and rude, despite me only answering his rude questions. Despite them finding nothing his only recommendation is next time I’m in pain to get my other rheumatologist to cut me open and do a biopsy.

If I don’t come back positive for psoriasis or anything like that what are my next steps for finding the cause of pain? I’m getting blood work done for blood sugar next from my GP.
I’ve had like 6 “flares” this year and I’m only 28.

Hello!
I got diagnosed with spondyloarthritis 6 months ago and was put on adalimumab. My rheumat said he’ll change my meds since my peripheral joints are still painful.

I’m a student, so I had to take a break from giving my exams because I couldn’t manage the pain and the mental toll it was taking.
I still find it difficult to concentrate and I’m struggling a lot actually with the exhaustion and fatigue and brain fogs. I don’t want to fall back even more academically. I have tried all dietary changes, electrolytes etc and I am still struggling.

Will someone please help me figure out with what has helped them?

To start, I've been dealing with a lot of pain for a long time that I've ignored and normalized for various reasons. I'm starting to listen to my body more and notice things that perhaps I brushed off before.

I'll start with saying that I can remember times as far back as elementary school where I would have difficulty raising my hand/arm because there was pain with it and I can't really say if the pain was in the shoulder or the arm muscle but I remember thinking it hurt sometimes just to raise my hand in school as a child.

Fast forward to now- present day- my arms hurt so badly today that I was having a hard time carrying a cup of coffee. I have upper arm pain that comes and goes. Sometimes it wakes me up in the night, some days I struggle to do basic tasks like sweep the floor or scoop the litter box because the muscle pain and weakness has now traveled down my forearm. My hands have pain and swelling that comes and goes. Some days are great and other days I have a hard time opening a bag of chips. My hips get stiff and getting up from chairs or off of the floor can be very difficult at times. I've been having chronic diarrhea so long that now I take immodium daily just to firm up my stool. There are so many other weird symptoms I could list but this is just a few.

I've had lots of tests and gone to 2 rheumatologists at this point. The first one listened but only tested me for the rhuematoid factor (negative)​ and did hand/foot xrays (normal). The 2nd one at Cleveland Clinic kept brushing off my symptoms, so by the end of the appointment I had shut down and quit trying to share any more since it wasn't making a difference. She basically said she believes that I have shoulder arthritis and wants me to start PT. The xray on my shoulder also appeared normal. I've had negative lymes tests but never been checked for any other tick borne illness.

I live in rural area so healthcare access can be limited. I have since gone to see another doctor who specializes in chiropractic and some autoimmune/other issues who wants to run more tests on me. I'm at the point where I don't know how much more I can handle. The pain is getting worse and my ability to do basic tasks is dwindling. I hate talking to people about it because they brush me off or make me feel it's normal, but I've learned that chronic pain isn't exactly normal. I'm not sure if I have arthritis in my shoulder- it seems unlikely but possible. Is it possible to have osteoarthritis attacking all of my joints at once? This seems more inflammatory to me, but I'm no doctor. I wish the doctors would do a better job at their jobs.

Just looking for anyone else's experiences, ideas, advice you might have.​ I've found on reddit that many other people out there are dealing with similar issues.

thanks for listening.

I've been going to a lot of sporting events recently (my partner is a high school teacher) and after only about 5 minutes, my hands start hurting from clapping. I'd still like to make some noise while cheering, but not at the expense of my health. But I didn't want to draw attention to myself if I get really loud noisemakers. Any ideas for a subtle cheering aide?

I (28f) have arthritis in my lumbar spine. I got a diagnosis in December 2025 and have been in pain on and off since the July 2025. I’m in the middle of my worst flare ever. I can NOT get comfortable. Not in bed, not on the couch, sitting is awful and so is standing and walking. What has helped you with your pain? What helps you to get comfortable during some of your worst pain days? I’m popping advil, using a heating pad, sleeping with a pregnancy pillow, and using cannabis.

I'm 22 and I just got diagnosed with arthritis after an ER visit for severe shoulder pain. My Insurance wont cover an orthopedic Dr. Or physical therapy. What's yalls best non medical advice. I need my shoulder I run a mobile mechanic business.

Hi everyone,

I’m in my early 30s and have been very active my whole life. Running, football (soccer), tennis, cycling, etc.

I was recently diagnosed with mild osteoarthritis in my right hip. My doctor advised me to stop running and other high-impact sports.

It’s honestly a very difficult thing to hear at this age. About 10 years ago I had surgery for a labral tear in the same hip, but after that I was able to do everything normally for many years. I’ve had problems with the hip again for the past two years, which eventually led to this diagnosis.

Are there any other relatively young runners here with hip osteoarthritis? How did you deal with it?

I’d really appreciate hearing your experiences and stories.