I've had fibromyalgia for around 20 years so am familiar with the symptoms. RA was diagnosed 4 years ago and I am now on Sarilumab jabs. I had a terrible flare around 4 weeks ago and couldn't get through to Rheumatology by any means. The pain in my hips was like fire and I had no real sleep for 2 weeks. The pain was also in my my bottom and groin. I thought my pelvis was fracturing!
I eventually got an appointment and saw the new registrar. He told me that you don't get RA in the hips and all my other very painful symptoms are just fibromyalgia. The pain in my hips is one of the worst of my joint pain. Because my bloods are ok and show that the jabs are controlling the inflammation, he just dismissed me. I have never particularly had swollen joints, just lots of pain and cramping which is, of course, invisible.
I have had steroid injections in the past just to help me through a difficult period. He said that I didn't need that as the inflammation is being controlled. They have really helped me in the past and I was very upset. I think he thought I wanted a steroid high as he told me that bodybuilders take steroids to make themselves feel good! Apart from the fact that they are Anabolic steroids, they take them to heal quickly so as to train harder.
I felt patronised and got the impression he was enjoying showing me how clever he is - not. I remember the day my hips gave way after years of painful burning and cramping . That was the day I went to the GP surgery and told them I wouldn't leave until I saw a doctor. That started my journey to RA diagnosis. I'm sick of being fobbed off.
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tazman3
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RA can lead to OA in hips. That's what happened to me and I've had 3 THR's. The pain can be unbearable, can't sit, lie down, get in/out car to drive etc. and surgery is the only option. Did the Rheumatologist not mention OA and order x-rays of your hips?
I have had acute episodes of hip/groin pain - and never have impressive inflammation markers. Because of my age it’s put down to O/A initially, but MRI and X rays have shown its not. But I have been told that RAcan attack any joint. I also have been told you don’t getRA in distal finger joints - until they see mine in a flare - glowing red, swollen acutely tender- then I get a confused ‘oh’ from the clinician
(Im sero positive RA diagnosed 12 years ago -now on Rituximab which seems to be working…).
Do you have the pain in both hips or just one ? I have PsA and it can cause inflammation in any joints including back , pelvis and hips but usually unilaterally. ( so I understand but I’m not a doctor) I think if you’re in so much pain they’re supposed to help you not fob you off !! I’m so sorry you didn’t get any help … that pain is horrific . You’re going to have to make a big fuss to get help … which is exhausting in itself .
I was told by my consultant that you can get RA in any joint in your body. There are many cases of people with RA in their hips, maybe you could ask your GP to refer you to a different consultant in the area, if there are any. Hope you get some help soon.
I did chuckle when I read your reply. I can't remember the last time I saw or spoke to any GP. I just get loads of messages inviting me to go for a jab for whatever or this test or that test so they can be good little boys and girls and tick their boxes. I have spoken to a Nurse Practitioner a couple of times and she is nice and actually listens. There is also a Mental Health team there who are good for my mind, but anything else is at the bottom of the list and the top never comes around. I don't even know if there are any GPs at the surgery anymore.
What an arrogant chap! Unfortunately, a little knowledge is a dangerous thing....but he'll learn (I hope) that his job is to sort out how he can help the patient, not to put barriers in the way of investigation and treatment by having a closed mind.
I'm afraid this requires you to be persistant and find out what help you can get. An orthopaedic referral perhaps? Or to see a physio (many of whom are expert at diagnosis).
Well RA isn’t supposed to affect the hips I’m 59 and my hips have always been an issue as well as knees and ankles my hands aren’t really affected but do cause me problems. I’ve had an X-ray and scan recently and although I have slight wear and tear in my hips I’ve recently developed bursitis in both hips and after an examination last Monday by my consultant he gave me a steroid in my right hip as that is the worst. The steroid has helped the right hip but not the rest of the joints which are giving me real stick but I’m between medications and haven’t had any since June. So hardly surprising. I wouldn’t take no for an answer and keep on at them if it persists, someone will help you eventually but be your own advocate and 2nd opinions can be useful. I’m lucky my consultant treats what he sees and feels and never puts my pain and swelling down to fibro even though I have that too. My inflammation markers are never deranged unless I have an infection. Sorry you’ve been dismissed and ignored maybe a nurse would be more helpful, I hope someone listens and you don’t suffer for too long.
I've had painful, stiff hips for years and like you was told you cannot have RA in your hips or lower back, it was OA that I had. To me it felt like RA pain, I was constantly dismissed.
Most of my issues are soft tissue related rather than joints directly.
I fractured my hip a few months ago, a long story cut short....I had a partial hip replacement as apart from the fracture the xrays and MRI showed my hip joint was in good condition, no OA 🙈, a full hip replacement was not required.
I'm 5 weeks post surgery and progressing well. I did have a wee blip 2 weeks ago when I tweaked the replaced hip, boy was it sore. I called the arthoplasty help line, the nurse told me that although the joint has been replaced, I will likely experience some RA issues due to soft tissue involvement. The RA does not disappear when the joint is replaced if surrounding tissues are involved, they are easily tweaked after surgery.
There are so many conflicting opinions that it is difficult to know what to believe at times.
All I can say is that the pain I feel in my hips and lower back is the same pain as I feel in other soft tissues...wrists, ankles, shoulders, fingers ...the RA pain.
Note my diagnosis is Adult onset Stills Disease which for me manifests as rheumatoid pain in every joint including my hips and actually the pain there is worse than other joints. I presume it’s due to the many functional aspects of that joint. Codeine takes the edge off a bit.
I was diagnosed at 14 (55 now), with RA (jia), and hadto have both hips replaced at 19, so It bloody better exist or else I had them done for no reason!! Plus, to add possible insult to injury, revisions too!!🤪🙄😁 Seriously, in my experience it definitely affects the hips.
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