Adult onset Stills disease diagnosed aged 17 in 1979 now 62 and not on RA drugs just pain relief and self management by living within the boundaries of what the condition allows.
2023 brought stress and may be the cause of worsening joint pain and new symptoms possible down to autoimmune thyroiditis as yet undecided by GP who focused on one cancer blood test and ordered lots of horrid scopes finding no cancer. I am however not my usual self.
Agonising hip pain has arrived on the side that has always suffered since Stills. I’m wondering if this is rheumatoid arthritis or other arthritis, or as doctors would have us believe, the hysterical imaginings of a post menopausal, depressive hypochondriac.
Anyway it’s scoring 7/10 in my pain level and combined with the other joints at 3/10 is making me extremely uncomfortable.
Winge over, thanks for listening. 😫
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I have RA and have started getting really bad pain in my left hip. I have a high pain threshold, but even so it has a 7/8 pain level. I was reading dr Google to see if it was osteo or rheumatoid but the symptoms seem to be the same for both. Painkillers don’t do anything for it!
Yes they do seem similar although I detect more swelling with Stills activity than with other associated arthritis..,, I think, so hard to tell. The pain is so sharp, intense, shocking and debilitating, I think I need a whole new mind set to deal with this. Stills was life changing but manageable this pain is equivalent to the pain I had then but centred on one joint as opposed to all the small joints which is typical of Stills, It could be a long hard night I fear x
I agree with the intensity of the pain. According to my rhythm my shoulders, wrists, elbows and ankles are knackered - her words, and I had steroid injections in 3 joints last week - only 1 of the 3 worked, but the pain is different to that in my left hip. My shoulders are bone on bone, as is my right knee, but the pain is manageable with painkillers. The hip pain is complete different! I hope you get some sleep.
Sorry to hear you are struggling. Stress certainly exacerbates our disease.
I would push to see somebody else if the tests you've had haven't brought a conclusion that you are satisfied with, and it doesn't sound like they have exhausted everything. Your hip pain could be osteoarthritis which is common as an added bonus to Stills disease. I have osteo layered on top (not a medical term, just my description)! It depends on how your inflammatory markers are, as it may be RA. I would persist in getting a second opinion on your new symptoms and hip pain.
It's easier to just put up with these things sometimes, rather than keep going back to the medical centres where we feel like we live there, especially as we often have a high pain threshold, but I would try and get another appointment both with another GP and your rheumatologist and take it from there. Maybe you need an X-ray to see if there is any damage in your hip as well as further blood tests for your other symptoms.
Good advice thank you I’m prone to accept every twinge and stab as just Stills and I must stop doing so. This pain is agony but just in one hip rather bilateral as Stills has been in my case. I do like your phrase layering on top 😄
😆...well it's the best way for me to describe it rather than use the medical jargon!
I get that you just accept it, and it's easy to just say it's the Stills. Mine has been bilateral, but my right has suffered more than my left, and although they've both had their fair share of replacements and revisions the right hip certainly got more of a beating than the left and has had to have a much longer stem than the left and greater bone grafting. That said I have more groin pain in my left.
Who knows what's going on and where sometimes, but we know our bodies and if we have a gut feeling something isn't quite right, we are usually right. We might not know what it is, but we often have an educational guess. I reckon you should take the plunge to contact your medical team and push to have everything investigated.
Your right as pain is also in top of thigh spreading into groin area today. Also upper arms which is odd. It’s quite intense, more so when keeping still which is even odder. I’m beginning to think it’s most definitely not Stills related.
Groin pain is often an indication it is a mechanical problem, but an X-ray would show that. I used to have to hit my hips when I was still and try and move the pain, which I know sounds bizarre, but you may understand what I mean.
Let us know how you get on. Hopefully you have some success getting in touch with your medical team x
It’s much more than RA and I think Rheumatoid Disease is a better term. Do you have other autoimmune conditions as well?
DISEASE OVERVIEW
Summary
Adult-onset Still’s disease (AOSD) is a rare inflammatory disorder that can affect the entire body (systemic disease). The cause of the disorder is unknown (idiopathic). Affected individuals may develop episodes of high, spiking fevers, a pink or salmon colored rash, joint pain, muscle pain, a sore throat and other symptoms associated with systemic inflammatory disease. The specific symptoms and frequency of episodes vary from one person to another and the progression of the disorder is difficult to predict. In some individuals, the disorder appears suddenly, disappears almost as quickly and may not return. In other people, AOSD is a chronic, potentially disabling condition. Various anti-inflammatory medications are used to treat individuals with AOSD, and affected individuals may respond to therapy differently.
Introduction
Adult-onset Still’s disease is the adult form of systemic juvenile idiopathic arthritis (juvenile Still’s disease). These disorders are named after Sir George Frederic Still, a British physician who first described a form of childhood arthritis associated with fever in the medical literature in 1896. Adults with “Still’s disease” were first reported in the medial literature in 1971, but cases that fit the description of the disorder appear as early as the late 1800s. AOSD might be difficult to diagnose given its rarity and the fact that symptoms may overlap with other diseases. Making a timely and accurate diagnosis is important for appropriate patient care and counseling. Although the symptoms of AOSD can affect quality of life, especially if they are chronic, the disease is not usually life -threatening. END.
I too was diagnosed with Stills disease at age 5. I am still down as having JIA but they refer to it as polyarticular rather than systemic juvenile idiopathic arthritis. If you are diagnosed with Stills disease it stays with you throughout your life, so I'm unsure why they change this diagnosis later on in life.
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