I'm new on this site does anyone experience severe pains in the legs

[Tinker24goodcat]

[JontyW]

Have you been diagnosed with vasculitis and if so what type and how long ago? You need to provide some background medical information to help members understand the background before they can reply to your question .. Thanks ....

[Albasain]

I agree with Jonty, We need to know what variation of vasculitis you have.

However in the interim let me explain some symptoms that may apply.

In my case, Rheumatoid vasculitis, This is a secondary condition of Rheumatoid arthritis. Rare indeed but how it affects me is such that the small blood vessels are affected which in turn affect the nerves in my arms and legs. The nerves in question affectively die causing various problems. Including pain! As it is, This, certainly in my case, is 24/7. What I have found is that it is not my joints that are affected but the tendons. In this respect it is the synovial fluid within the tendon sheaves which is affected. This may be attributed to diet or lifestyle. I'm still working on that. No attributes to consultants on this!

The conditions I can suffer are as follows: Massive muscle spasms in both my hams and extensors muscles occurring occasionally, plus also effects of medications in regards long term use of steroids.

I am, in myself, determined to beat this disease and it needs a positive attitude to do so, much help is available on this site as is also on Vasculitis UK

[Suzym2u Moderator Vasculitis UK]

John has Wegeners Granulomatosis ( GPA ) he suffers from severe pains in his legs quite often, usually if he has to stand for long periods of time or even just slow walking, sort of ambling along. He usually has to sit down and rest or if it is possible elevate his legs. He also has a hard pillow to rest his legs and feet on in bed at night. As the others have said, having more background knowledge of what type of vasculitis you have and how long you have been diagnosed may help answer your question in more detail. With all these things if you are in pain and your legs and/or feet are of a concern please speak to the doctor who treats you for your vasculitis.

Best wishes

susan

[LynneJ Vasculitis UK Volunteer]

Hi there

If it turns out to be nerve related, it is not all bad. It does improve in time but very slowly. I have read that nerves can regrow. And in my experience it has been true. So patience and gentle movement is the way forward. We all have different ways of coping in the mean time.

With a bit more info I am sure people will get back to you with coping strategies.

Take care

Lynne

[mickt]

Hi ive gca and had symptoms of pmr,also type 1 diabetic,ive get burning sesation in my legs and feet ,been told diabetic neuropathy ,nerve damage dr put me on amytripilene ,for pain relief .They have lessened it but its later in the day when it seems to be at its worst for me.