New to me is this feeling that my legs are restless when im trying to sleep. Im moving them about most of the night, in and out out of the bed clothes. I feel worn out but my legs have taken on a mind of their own.
As i have other symtoms could this just be one more or is it quite seperate do you think.
Thanks
You are not the only person with this problem - a friend with PMR has it too. She also probably has another vasculitis but it hasn't been identified for much the same reasons as you. She saw a neurologist privately who diagnosed it as restless legs syndrome and recommended medication for her GP to try. She also has neuropathies - quite a mixture really. The rheumy she was seeing was a hopeless about it all - he said it was "proximal muscle weakness due to taking pred". It wasn't.
It is difficult to say if it is part of a vasculitis or simply coincidence. Either way - something is not right is it?
You areso right. something is changing and im just on the starting line for getting a diagnosis or not. Got a referral to rheumy now so thats my first step.
Thanks
Tonic water or quinine helps my restless leg syndrome considerably. NOT GIN AND TONIC..... just the tonic which has quinine in it. I drink 8 ounces with a slice of lime, lemon or orange every day. It stopped. Worth a try. Took about a week or two and each day it would be less and less until it was just gone. Worth a try because restless leg syndrome is one irritating disease. You don't get enough sleep, the cramping is unbelievably painful and it hits you as soon as you are ready to rest for the day. I was sure glad to be rid of it. I was also told it was a side effect due to high dose steroids which I received for CNS vasculitis. I hope it works for you.
Warm wishes,
Canary
Thanks for the tip, anything is worth a try.Never been one for gin and tonic but did like a pernod now and then, but since my endless symptoms cant even do that, my gut no longer tolerates alchol, are there any pleasures left to us.
I have this problem as well. Have had it since March last year when my vasculitis problems first started.
At least our bodies are telling us that something is not right...i hope you find something to help, its like your minds shattered and then the legs want to dance all night.
I have pmr and gca and I get terrible restless leg , and it's such a weird feeling I don't know what to do with my legs or how to explain the feeling to other people, I also get very bad cramp, I thought it might be because of the prednisolone , I started on 60mg October and now on 30mg.hope we are all better soon.
There are medications for restless leg syndrome - if they work at a lowish dose it is well worth asking to try it to see if the benefits outweigh the downsides. They can make you dream a lot if you need a high dose - so you still can't sleep too well!
Cramp can often be helped by taking magnesium tablets - it is standard treatment all over the rest of Europe, it is the first question a GP will ask you if you complain of leg cramp. You can buy then from the chemist and they are completely safe alongside pred.
Will have a look at them...need a good nights sleep
Got rheumy appt soon so hopefully will find out if i have a form of vasculitis. Thanks
Do you have pain in your legs that affect how you walk - either due to a vasculitis problem or something totall different. If you do when you walk in way that is not totally natural you can develop what are known as ' trigger point' deep in the mid front thigh that can cause restless legs. Several other causes including steroids are known but this more benign cause is often overlooked so just thought I'd mention it - trigger points can be treated and people who have been tormented by restless legs for years and have tried everything have found suprising relief when they get the trigger point sorted.
Yes i do have pain when i walk from Spine nerve damage as well as problems with my knee. Not got a vasculitis diagnoses yet but symptoms are happening at a fast rate.
Thanks, I'm going to mention my restless legs to the doctor, but I'm on so many tablets. I get bad cramp in my hands also they seem to lock .
There is an article on restless legs in today's Times. I've tried most of the remedies that he suggests and not found them very useful. But he does suggest a short walk or some exercise before you go to bed....and that did work for me. I did hamstring stretching exercises on my way upstairs and there was a distinct improvement. Might be worth trying?
When my vasculitis (PAN) was diagnosed, it was mainly the blood vessels in my legs that were blocked. I suffered from very bad weakness in my legs and restless legs while at rest, either sitting or in bed. Not quite as bad as your symptoms, but similar. Plus joint ache at top of legs and knees, and shoulders (quite bad, restricted movement a lot) - apart from that it was stomach and bowel trouble. It's very possible that it's the vasculilis giving you a new symptom. Because my legs became so weak they did an angiogram on the legs and found the blood supply very severely compromised. It eased off a lot with initial treatment, and remains much better.
I to get restless legs as does my mum who doesnt have any form of vascullitis she wears support bandages. I find that a couple of paracetamol before bed do the trick sometime I also need to take codeine It is really annoying isn'y iy when your body is exhauted and your legs take on a mind of their own
Don't know, but I will bring it up with the neurologist when I see him in a fortnight. I thought I was the only one with this. My legs go stupid in bed xx
I have had restless leg syndrome for more than 20 years, long before I developed WG. It is treated with sedatives. Otherwise you won't be getting a good nights sleep.
Hi,
I didn't know I had restless leg syndrome until I mentioned it to my neurologist. Really an eerie feeling. I also have severe cramping throughout my body, and pain at night and couldn't sleep. My doctor prescribed Baclofen. I now feel so much better, and I can sleep again!! I would speak to a your neurologist if you have one.
the only thing i find that helps me is, while on the bed, put your legs up high, say on the wall if possible. i am not saying it will help you, but i have got relief by doing this. have them well up, its worth a try, It might help, it might not, but i do know all about it, I also get it at times in my arms.. not nice at all. let us know how you get on if you do try that. 
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