Hello, Fellow pioneers in rare disease. I ha... - Vasculitis UK
Hello, Fellow pioneers in rare disease. I have had GPA for 6 years, I have now been diagnosed with Fibromyalgia. Any one else had similar.
Hi. Yes I've been told I have fibromyalgia too.
I've been diagnosed with Fibro for about eight years - and this year I've been diagnosed with vasculitis.
Any hints on learning to cope with both. As struggling to come to terms with what to do for the best.
Hi. In consultation with the rheumatologist and physio and a lot of trial and error I have found that Voltarol gel helps ease the pain a little. Keeping the areas affected warm and not over using the affected muscles helps too but you need to keep them working otherwise they will become stiff and even more painful
Hope that helps.
Love to hear any other tips
I have gpa/wg for over 21 years.
I also have fibromyalgia - it was originally diagnosed as "muscular arthritis" in 1978.
Hi TheresaK,
Was diagnosed with M.E 25 years ago, Fibromyalgia 10 years ago, then Vasculitis Aprilthis year, and Type 2 Diabetes last month. The medication i was put on which suited me best, was Gabapentin, Deluxetine, and Transtec Pain Patches. That has kept me going up till this year, and i still take it alongside my new medications.
My advice would be to get referred to a Pain Management Specialist to make sure your medication helps with all your symptoms, and to join a local Fibro support group. Its another misunderstood condition that can make you feel isolated and chatting to someone who goes through similar challenges can be very helpful.
I bought several books on M.E and Fibromyalgia, but the overall message is: pace Yourself and learn what your daily limits are, stress is your enemy, learn what makes your fibro feel worse and make a note to avoid it i.e foods, smells, even places (i cant do shopping centres, or other crowded places), and finally, dont feel guilty at cancelling events or nights out with friends and family, they will understand if they have problems getting their head round this, i found this letter a wonderful aid to helping people understand
fibromyalgiatreatment.com/l...
Well i hope this helps, and good luck for the future,
