I have had a series of quite severe painful areas of my body in the last few years and am beginning to connect them with my vasculitis. I started with bursitis in the left hip in 2010, then a severe muscle pain in one buttock, then plantar fasciitis (pain the the sole of the foot) which made walking almost impossible.
After that, pain in the right side waist area of my back, and I have now just said goodbye to a pain in the outer edge of my right foot. All of these last for 2-3 months and do not seem to be connected to flares.
Anyone else suffered the same?
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Ayla
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Hi Ayla, John here. What sort of vasculitis do you have & when was it diagnosed? I have had WG for 11 years and consider myself quite well, but I still get odd pains in my feet & hips when walking any short distance. I used to get pains all around the top of my pelvic girdle, where the muscles attach, but not now. With hindsight I had several vasculitis -related problems for many months before it "came out of the closet". If your problems are since diagnosis, there are three things to consider 1) the disease may not be quite fully controlled so it goes on doing naughty things below the surface. 2) Some of the damage done by vasculitis, especially nerves, will never recover. 3) If you have vasculitis, it's very tempting to blame everything on vasculitis, but other people have these problems too - vasculitis is confusing!
I have had WG for 13 years and have suffered from plantar fasciitis in my right foot, requiring steroid injections. I have also had bursitis in my right shoulder but that was due to my previous role as a sonographer, using my right arm to scan for prolonged periods of time.
My sister who has another auto immune condition is suffering from plantar fasciitis too, unsure whether there is a link. It may just be bad luck due to us both being on our feet all day, me previously a nurse and my sister a hairdresser !!
I've had WG for 23 years. Probably about 2 years from the start (and while my disease was well controlled) I suffered a bout of Plantar Fasciitis. I sympathise ..... the pain was horrible!
Anyway, although I have never been very convinced by a number of 'alternative' therapies, my GP suggested acupuncture was worth a try - he had learnt it over a number of years. One session was all it took. Having suffered for 6 weeks it was well and truly gone the following day!! Amazing!!
Maybe this could help you? You don't even have to be a believer - I certainly wasn't at the time!
Thanks, everyone. I have MPA and never considered linking these roving pain sites with my vasculitis (it is true that other non vasculitis sufferers get these conditions too!) until I read something on an American MPA blog site. Apparently several people there suffer the same sort of thing and think there is a connection. It is certainly very strange, the intensity of the pain and the length of time it stays with me.
I have the usual neuropathy in my lower legs and feet but this is something entirely different.
I do not think my vasculitis is fully controlled but it is so much better than a year ago when, after my kidneys started to fail, I began the standard prednisolone and cyclophosphamide treatment. Unfortunately, or not, I had to abandon cyclo. and switch to mycophenolate mofetil after 2 months because the cyclo. was affecting my liver.
The strange pains have been coming and going for about 4 years. I have been diagnosed for 9 years but received very little in the way of treatment for the first 8, probably because we lived abroad.
I have not yet mentioned any of these pains to my consultant, perhaps I should, if only to add to the body of useful information?
Forgot to add, thanks for the acupuncture suggstion, Dave. Someone in America has also reported a miracle cure from these pains using acupuncture, so it sounds like it will be worth a try!
I seem to be taking over this question and answer session, sorry! but it has occurred to me that because we suffer from a chronic inflammatory condition we may be more prone to other inflammatory conditions, more so than the general population.
I get Rhumatiod Arthritis, although I haven't had an 'attack' recently, usually when the weather is wet and cold,that can last two, or there, days. I don't know if this much help but, in any event, I wish you well (some hope!!!).
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