Vasculitis UK
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Strange altered sensations in the skin

I have neuropathy in both my feet, no pain other than it feels like my soles of my feet are falling off and a fizzy sensation on the skin on the inside of the leg below the knee and no sensation on the outer side below the knee on my left leg. Recently I have developed a fizzing feeling in the skin underneath below my shoulder blade, I can only describe it as sticking your tongue on the prongs of a nearly dead 9v battery. Are these strange altered sensations common to vasculitis?

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I have very similar to what you describe only it’s everywhere now including my face, lips and gums. In my case it is sometimes extremely painful but increasingly becoming numb as it progresses. It’s assumed to be small fibre neuropathy and autonomic dysfunction associated with my Sjögren’s - and possibly a related small vessel Vasculitis.

The main treatments are drugs such as Gabapentin - but they are for pain killing rather than to modify. I can’t tolerate these and they don’t prevent the numbness.

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Don't know if they are common but it sounds similar to the sensations that I get.

Just trying it now, with my numb finger tips, when I rub them together I can detect a buzzing/ fizzing sensation. I also have no pain, just loss of sensation.

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I've started to get tingling & numbness in my fingers too - before it was just my feet. I had a nerve conduction test which confirmed neuropathy in my feet. I'm having a flare up so assumed it was vasculitis.

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I have G.P.A and have the same sensations in my legs arms and hands which worsen when I walk or use my hands a lot, I also have a lot of muscle twitching. I have been prescribed Gabapentin, but had to cut the dose down as I had a bad reaction. I take one at night as without it I am unable to sleep as my legs drive me mad. I have learnt to live with it and all the other symptoms the best I can, but I have my bad days when it really gets me down.

The consultant told me it was a result of nerve damage caused by the vasculitis and basically all they can only help with meds.

Oh for a magical cure!

onwards and upwards.

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Following on from my earlier thread about unmet needs there is going to be a presentation at the UKIVAS meeting about peripheral neuropathy. Will report back anything useful.

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Thank you, it's the non-peripheral areas I was unsure of but it looks as if it is fairly common incidence for others but I could not find any information about it. All I can find is the peripheral neuropathy information. Thank you to all that have commented, it has been very helpful.

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Hi Sue I have the same problem with my hands and feet. I feel like someone has run wire through my extremeties and pulled it tight. Now and then I get a fizzy feeling in my legs. I used to get electric shocks in my left arm and hand but not anymore. I used to think that was the nerves regenerating, so I was sorry when that stopped as no further improvement. My consultant assured me it's all Vasculitis related. Hope this helps.

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I too suffer with the same in both my feet and its not very nice.....

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I have it also in my feet. No matter what time of day. Also my feet are swollen. Can only wear flip flops in December

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Thank you to all that have commented, it has been very helpful.

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I also neuropathy in both feet, it changes from feeling like severe frostbite or complete numbness. I cannot stand anything touching my feet, really struggle wearing socks or shoes which encase my feet as do painful and useful in this weather! I also have feeling of numbness in my left thigh which if I stand or sit for a long period of time spreads to my pelvic area; it’s painful and unpleasant. I also at night get leg spasms it usually wakes me and I have to get up and ride it out for 2 - 3 hours, it’s a really horrible sensation and can be painful. The joys of this condition!

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