I have been suffering from morning stiffness, pain in my hips, neck, shoulders, wrists and hands. Plus sensitive left temple, brief left temple headaches and jaw pain while chewing (which has now stopped.) I got a steroid injection on 04/05 and it has made a HUGE difference to the morning stiffness and joint pain. The neck, shoulders, upper arms still ache. But I am now pushing doors open, pouring from a full kettle and no longer using both hands to hold a cup - things I could not do before. My sleep is still very poor.
Does the relief I got from the steroid injection mean anything?
Thanks in advance for any replies.
PS : I was seen by a rheumatologist on the 24th and she told me that it was fibromyalgia - I disagreed.
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I think you were right to disagree with the rheumy - particularly in view of the jaw pain when chewing and the other symptoms. They are all typical of PMR with touches of GCA.
It is not unusual for patients to be given a steroid injection for a particular problem only to then realise that a lot of other non-specific aches and pains (or so they thought) have disappeared and a diagnosis of PMR be made. Fibromyalgia does NOT respond to pred - that is the primary difference between PMR and fibro. Do you really mean you had these typical PMR symptoms that responded to a steroid injection and a rheumy subsequently said it was fibro? I think she needs to to some reading - particularly the latest pocketbook from Oxford University Press about PMR!
Not sure what to suggest - other than starting with your GP. You may be lucky and find one like the other GP I eventually saw in my practice - who did recognise PMR when another GP and a rheumy didn't. Where are you? Maybe someone can recommend a rather broader minded rheumy.
Thanks for the reply, Celtic. The weird jaw pain does not bother me any more, but the left temple headache reappears briefly, sometimes several times a day. I am very careful when I shampoo my hair every morning - carelessness can give me a bad headache. Yes, the Rheumy said I have fibromyalgia and she gave me some Fibro leaflets. She said I have been in pain for a very long time because of 5 protruding discs, and sometimes the body goes into chronic pain as a result. She said she was ruling out other things because nothing showed up in my blood tests.
Later, we found that my online record had not been updated with the injection given to me on 04/05, and her diagnosis was based on the record on the system. After I told her about the injection and the improvements I felt she said that this did change things, but she was still convinced that this is fibro. I am 45. I am located in SE London.
They aren't proof, they just add to the picture. there are no definitive tests for PMR and only a temporal artery biopsy for GCA - and even then, while a positive TAB is proof, being negative is not proof it isn't, it just means they didn't find any giant cells. Not the same thing at all.
Yes, the relief you got from the steroid injection means a lot, especially if comparing PMR to Fibromyalgia! Whereas around a 70% improvement in symptoms can often be taken as confirmation of PMR, steroids will do nothing for Fibro which all proves how right you were to disagree with that rheumy!
Now you will either need to get a second opinion from another rheumy or if your GP is knowledgeable about PMR, persuade him/her to prescribe oral steroids (Prednisolone) before the effects of the steroid injection wear off - that could be some weeks to a few months off.
Meanwhile, take special care not to overdo things in these early days as the original symptoms of PMR can come back to bite.
The Rheumatologist (Rheumy 1) who gave me the steroid shot told me that the effects would wear off in 6 weeks and to note any changes I experienced. She also said that it would skew my test results, but that she would factor that in and track changes across various test results.
Unfortunately, Rheumy 2 said that I do not need to be seen at the hospital again and that the GP would help manage my treatment/fibro from here on. So I may not get to see Rheumy 1 again.
It sounds as though you definitely need another opinion, unless you can get referred back to the first rheumy. If you can get to Surrey, I can recommend an excellent rheumy.
I agree with Celtic - take a trip to the SW! Bless him - he'll be snowed under at this rate!
Sounds as if No 1 had suspicions - but may not have written them down in enough detail. Or far more likely is that No 2 didn't bother reading your notes.
Hello I have suffered with PMR for over 4 years last year a Rheumy gave me a steroid injection in a vain attempt to help me get off Prednisolone 6weeks after the injection the pain came back in a BIG way. I think you Rheuny is like mine fairly useless. If I where you I would demand a course of pred for a 2 week period. if your pain goes away you have PMR and then its a very long road to get off the pred but its much better then living in constant pain. Best of luck hope you get sorted.
I do wish they'd learn a bit about the mechanism of PMR - it is a chronic illness, new inflammatory substances are shed in the body every day as long as the autoimmune bit is active. A steroid injection will work for inflammation that has been caused due to a single event - it will only work for a short time for continuing sources of inflammation. It isn't rocket science...
Sounds more like PMR &GCA maybe together with fibromyalgia. Glad the injection helped, but I think you need to be on a regular Cortisone for at least a year or two to clear it.
Thanks a tonne, All, for your responses. Got a letter yesterday with a diagnosis of undifferentiated inflammatory arthritis with possible additional fibromyalgia. Here's an initial diagnosis I can work with - because it gives me confidence that it will get treated, that my pain is on their radar so to speak. Certainly, this strange pain is not easy to diagnose. They will see me again soon, so very grateful!
Undiff inflammatory arthritis will be managed with DMARDs I suspect - and they don't do a lot in PMR. So given your response to the pred injection - don't forget to mention that, nor the GCA-type symptoms because if you DO develop GCA it will need pred. It's all that works so far. Keep an eye out for jaw pain and temple pain - and any visual symptoms should result in an immediate trip to the GP, failing that or if he doesn't take it seriously, to A&E, preferably at the hospital where your rheumy is.
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