My doctor diagnosed me with PMR last July and I've been bouncing back and forth from 30mg to 15 mg Pred, presently on 25mg, but still in a lot of pain.
I've been reading about Fibromalgia which seems to have very similar symptoms to PMR, the majority of which seem to match the pain I suffer.
It would appear that steroids are not the answer for Fibromalgia, so am wondering how many people are actually diagnosed incorrectly.
I have my first rheumy appt a week on Monday, so of course will be asking the questions! but would appreciate hearing people's thoughts.
Been snowing here in Maidstone today, with I believe a lot more to come over the next few days - can't wait, I don't think!! :snowball:
Hello Yvonne - Do you have regular ESR and CRP blood tests? If these are or have been raised then most medics take that as a guideline for diagnosing PMR as opposed to Fibromyalgia, although there are a few people who have PMR without raised markers. If you do have regular blood tests, then it is generally recommended that if the markers have returned to normal, then it is safe to reduce the dose by 1 mg a month when on the higher doses such as yours. With Fibromyalgia, I believe the joints are tender or painful to the touch. Do hope this helps but maybe you will get more answers and reassurance when you see the rheumatologist next week. Loved your snowflakes by the way but didn't enjoy them when I was out walking in them this morning......much too cold in spite of thermals!
MrsO
Hi Mrs O. Yes I've been having the blood tests which have sometimes shown raised esr and crp levels, it all seems so confusing and frustrating. I guess I should come to terms with not getting a 'quick fix'.
I'll just have to be patient and see what the rheumy says - I'll let you know how I get on!
Keep warm!
Hi Yvonne
Confusing and frustrating just about sums this condition up. My GP also suggested at one stage that she thought I had Fibromyalgia rather than PMR, because my blood levels are not raised, but there are differences between the symptoms. The BSR Guidelines for the Management of PMR highlight bilateral shoulder pain and an improvement of 70% or greater within a week of commencing steroids as key indicators of PMR. The shoulder pain at night in bed is unlike anything I have experienced before, makes sleep virtually impossible and reduces sufferers to tears so if you have similar pain it is more likely to be PMR than F.
Hope it helps
Bob
Bob
Glad to see you have read the guidelines, did you visit the rest of the site? Was it helpful? Did you look at the email mens support group?
Here is something I think might help - triangular pillow and sleep slightly propped up with it.
Also - OK I know it sounds odd, but a wheat pillow heated in the microwave also helps and failing that a TENS machine.
But it will subside, so I am assured by my fellow PMR sufferers (me I have GCA).
Hi Bob, I do have shoulder pain but mainly on the right side and I didn't get this until maybe 6months after starting with symptoms. When I first went on steroids I thought all my troubles were over because I felt so good after a few days, but unfortunately I seem to have gone downhill over recent weeks.
I also notice PMR sufferers get pain in the thighs and hip, whereas I don't, mine is more in the muscles across middle/lower back, but then I have had previous trouble/operation on my back, and also know I have wear and tear in my neck, which of course could be causing the pain in my shoulder!
Hopefully all will be revealed in a couple of weeks time with my first hospital appt - that's if we're not still snowed in here in Kent!!
Hope you continue to improve.
Hi Yvonne & Mrs K
Yvonne - The consultant is the expert but I have to say that from what you describe it does sound more like F than PMR and the fact that the steroids do not seem to be working may also be a clue. I know that steroids are not given for F but as they seem to improve so many conditions it is not unreasonable to assume that they would also have some effect on F but perhaps not work longer term as you are finding.
Regarding the symptoms of PMR you will find that the experiences of sufferers on this site vary considerably but the shoulders and upper arms are almost always involved. My complaint started in one thigh last September and took several weeks to work its way round my body until both thighs, both shoulders and right wrist were involved. My hips have never been a problem. Others on this site only have it in their shoulders and at least one has it in her ankles so there is a lot of variation.
I hope you soon get some relief soon and the snow doesn't affect you too badly.
Mrs K - the site was very useful but I haven't followed up the men's support group yet. I tried a TENS machine on my wrist, when it was so bad that I couldn't hold a pen to write, but it didn't really work for me. After an initial inflammatory stage of a couple of weeks the pain in my wrist reduced to something more tolerable and I can now use it again.
Regards
Bob