Vasculitis UK

Does anyone else out there get intermittant numbing of their legs?

I have Churg- Strauss Vasculitis- which I have had for 16 years. My legs go numb from the knee down whenever the mood takes them. Strange as it sounds I then have excruciating pain in the backs of my knees. I have no triggers and I can be woken from sleep due to the numbness. Standing, sitting lying down makes no differecne I get ferocious tinglingling as a warning. cold can make them go numb too. I caan't be the only one that has this problem to contend with!

7 Replies

i have WG and i have permanant numbness down the left hand side of my left leg, down my left arm and the first two fingers on my left hand.

i also have -for want of a better phrase - a deep cramp in my left calf muscle which fires off as and when it pleases, usually in bed and can cause me to wake up. no idead why at the moment, doctors are doing a check of my nerves. i have had MRI scans which prove that there is no trapped nerve in my spine...........

what has your GP / Consultant said about this?


I too get numbing of the legs, it feels as if my legs are freezing its not a nice feeling, I also get tingeling as if there is water running down my legs. This sensation was my first clue that something was wrong with me , but it took a long time to diagnose. My feet feel numb a lot of the time and it does wake me up, my fear is if I stand up I wont be able to walk so far it has not happened but I dread the day it does.

Chin up luv we are still here!!!!



Hi I have CSS and for no reason differant parts of my body go numb was reading the other day and both my arms and ankles went dead the doctor says its mussels spasams and to take pain killers it helps the pain but not the numbness. It's very scary but I dont know what we can do about it if I find any thing that help's will let you know



I have to say I have never sought an answer to the numbnesss probably because I don't complain about it very much because I know nothing can be done about it. My feet usually feel cold especially my right and I have altered sensations in my feet and legs too. The worst bit about this illness is the 'invisible illness sydrome' If it can't be seen it doesn't exist.



Hi I have WG and both my feet are effected i can only feel the balls of my feet and toes but if the worse happens i cant feel them, the upper part of my right leg, hip and back are also effected, my rt hand goes into pins and needleswhich is terrible at night as it wakes me up, i havnt come up with anything that helps with the pain as yet....



Hi I have WG and suffer with cramp like spasms in hands feet and calves...scary when happens regularly and often at night with the 'awful sweats' too. Had the nerve conduction tests (which was rather electric shocks!!) just another small but irritating symptom to put up with I expect but I do think the Calcichew-D3 Forte help as they are less when I remember to take them. Maybe having a low calcium blood level has something to do with the spasms?


I have Churg- Strauss and have numbness down the left outer thigh. Generally this only comes on when sitting up in bed (to read etc). However it happened the other day when I was out walking. That's never happened before and I must say did frighten me a fair bit!

I also get numbness in my hands and fingers if I hold something with a similar weight to an iPad, for longer than a few minutes.

My husband's

just waiting 'till it reaches my mouth! ;-)


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