Adult onset Stills disease diagnosed aged 17 now 62. Steroid free since mid 20s and self managed with OTC pain relief, splints and careful pacing of physical activity. Constant joint pain, afternoon fevers and very bad sore throats are usual for me. Over the years other AI conditions have appeared and are treated and kept at bay.
2023 brought major emotional trauma with three family deaths in 3 months. I experienced new and different symptoms and long story short, no cancer found and Dr said likely subclinical thyroid issues and refused further investigation.
2024 I’m still unwell with worse joint pain and other possible thyroid type symptoms. Recently new and agonising pain has persisted in my right hip, occasionally down the thigh, across lower back and inner thigh.
Stills symptoms like fever, headache , sore throat and joint pain are worse than normal. I’m wondering if this is a Stills flare, something else going on with the hip or PMR related symptoms. I consider this as this year I’ve experienced muscle pain in the thighs, neck and back of upper arms. I can however move about etc snd know PMR is much more severe than what I described here.
Just look for advice as GP said OTC painkillers a month ago and they don’t keep the hip pain at bay at all. Could this be bursitis of the hip as it’s one sided or does it sound like RA? Feels like a thousand angry hornets are inside the hip bone and bending is difficult.
Thanks for any advice offered.
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probably best to get your rheumatology department to arrange x Ray and MIR find out exactly what’s going on. I had pain in both knees and was told to take pain killers and then steroid injection but needed knee replacements. Second one now done and the difference is remarkable. I had top pusb for x rays
Thank you, I was due a guided steroid injection in my foot but referred upwards for some reason, likely the complication of Stills as podiatry had not heard of it
Thanks for the encouragement, it’s easy to plod on when you can’t get seen by the GP and I want to avoid codrine based OTC meds as long term use may have already contributed to recently diagnosed diverticulitis found when looking for cancer which was absent. Every cloud …..
I don't know but might an Oestopath help ? . I sometimes do my back (usually my own fault!) and Oestopthy gets it sorted quickly. And no pain medication is needed. I've had steriod in my left foot it relieves Mortons Neuroma's until an operation resolves the situation completely. I don't know if thats what you've got though. An Osteopath can treat all manner of spine and hip stuff in any event its work asking.
Hi ML, I think it’s caused by my known condition as the afternoon fever and sore throat is worse too. However as it’s only one side and Stills usually attacks bilaterally I’m not 100% about it. Thanks for your reply and suggestion, I’ll search for one local to me. I do know a good sports physio who may help. I did wonder if it could be thyroid related…. I’ve made no progress in this with my GP.
I’ve got Hashimotos Thyroid or Hypo and it’s never affected my hips. It’s eyebrows, fatigue, rough skin, coarse hair and it used to be hard to swallow in the morning. Sounds weird but true. I hope you get some relief soon. Xx
Prior to a referral to orthopaedics or rheumatology, your gp has to do some tests. Bloods to check inflammatory markers, will indicate if it’s RA or PMR, which both cause raised markers. He can order an X-ray of your hip, which will show if it’s wear and tear. If nothing is found on X-ray then GPs can order MRIs, I’ve had several instigated by my GP. Only then can they find the potential causes, and refer on to the relevant specialist. I had PMR for around 5yr, and it causes the most extreme stiffness, but steroids do help.
Thank you for your reply, I’m ringing each morning at 0800 to get a call back from nurse who then decides if appointment is given but so far no call back appointment with nurse has become available. Also I’ve been away caring for my Mum 87 after she fell and broke her hip, perhaps it’s deferred pain from her injury…., this would be medically interesting! I’ve experienced this hip pain before but never so painful and for so long and have always attributed it to Stills but this feels different and other usual joint pain has worsened too hence I blame Stills. It’s just that this is much more intense pain than before. Thanks for your reply.
Have you had any Xray/MRI …I guess you have asked for further tests?
Have you ever taken disease modifying anti rheumatic drugs? Maybe discuss/ask rheumy if they would help?
What you describe could well be Bursitis..which I find comes out of nowhere ..last a week or months…then disappears over night. But that’s how it affects me. I know years ago a GP gave me some sort of cream to rub on….it did no good & my rheumy just laughed at the idea…..so who knows?
I hope you get some good advice soon.- keep at it!
I found it came in spurts …..you are in agony…..then you wake up next morning & it’s easier….but by bedtime it’s back. Thank goodness I seem to have grown out of it!
I’m hoping it will fade, it’s been a few weeks now with pain levels rising and falling. Sitting and lying are worst and bending but walking is ok. It’s just one more thing to tolerate but one more thing too much to put up with long term without pain relief
I know….things seem to be going along fine…then all of a sudden you can’t trust yourself to go down stairs! But to date I have found the pain disappears overnight for no apparent reason…I hope that happens for you!
It sounds like the pain in your hip and leg might be from your sciatic nerve. I think that is what my myalgia pain was from. It would get so bad that I thought I'd be in a wheel chair before I could see my doctor. Anytime I ate dairy it would happen. When it flared up, I couldn't even get out if bed, or if I knelt down to the floor, I couldn't get back up. But cutting out dairy took care of the problem. I theorized that the dairy caused my muscles to be inflamed which put pressure on my sciatic nerve. I dont know if that's true, I just know quitting dairy stopped the pain.
Ok that’s interesting, I’m veggie so dairy is a key part of my diet. I’m losing weigh without trying so don’t want to meddle with food intake too much at the moment plus I have digestive issues, RA or medication induced not sure but mouth to stomach is a highway to hell right now. Forgive my ignorance but my hip pain is RHS, I thought sciatica was LHS?
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