Nerve damaged hands and feet

My husband was diagnosed with PAN in September after a long period of illness and rapidly deteriorated until he was transferred to the wonderful team at Addenbrookes. Unfortunately the previous diabolical treatment (ie none) has meant that he has lost nearly all the use of his hands and feet. He now uses some great ankle supports so can move around which is fab (although he does look like a rather drunk giraffe!). But the lack of use in his hands is so frustrating. Does anyone have any experience of dealing with this? Will he ever be able to use his hands normally again? Just the thought of him ever being able to open a door or do up a button again seems like something we will need a miracle to accomplish.

My patience has run out and this doesn't help

5 Replies

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  • Hi Jmtjat, I to have pins and needles in my hands and feet, but with the added problem of numb feet, which is

    painfull to say the least . I have been like this for year now, my hands are better can now use normal cutlery, turn pages and hold a proper ceramic mug before it was plastic!! didn't burn my fingers. I still cannot pick much up with either hand i.e. pills ,pens oh I can now sign a cheque just about. I have not driven at all for the past year in my mind I can drive but do not trust myself or have the energy. By the way I have WG, and still not do a button up.

  • My husband also has PAN, diagnosed 3yrs ago. He also could not use his hands, slowly this has improved. He is on Gabapentin to help the pins and needles, his fingers lock and he has to physically straighten them. Most days he is able to work his computer and IPad. Do not give up.

    You are the first post I have seen with someone with PAN.

  • Oh, it's a miserable part to vasculitis. I was diagnosed a year ago this mid January, although my MPA was chugging along for at least a year+ before that. My feet started to tingle and become sort of numb prior to Xmas last year, left then right and up my right leg. My right hand actually became involved on the night I was admitted. Fortunately I was admitted into Addenbrookes , and treatment instigated quickly. Never as bad as what your describing but for me bad enough. As I started to respond to the treatment it was the neuropathy that would pull me down. I live on my own so had to adapt lots of things to get around the problem. The fingers effected were thumb, first and second finger and part of ring finger, tracking that specific nerve. Couldn't hold a pen etc. one year on I have much better use of my hand, can't say it's perfect but much improved and find myself automatically doing things with the hand that I hadn't be able to do initially. Still feels strange but to me it's in the right direction. My feet are lagging behind but was told 9months for my hand and 2 years for my feet, I do appreciate that is a rough guide and also that nerve recovery can be a bit mix and match.

    Shoes are a problem as leather court shoes feel like my feet are in vices, I have found for me Sketcher Go are good as they have support and are softer on my feet, also have a solid base. I have a electric blanket which I use at the bottom of my bed for lower legs and feet, have it set high for one hour and this is invaluable to me as my feet feel cold all the time, on even in summer. I think it is a matter of intensity of the problem and working on things, as trial and error, but most of all keep on keeping on, things will and do improve. Not as fast as we want, not to the degree we want, but hang on in their. Best wishes Pam

  • Hi, I can sympathise with your husband. I was diagnosed with PAN over 30 yrs ago...changed in 07 to CSS!! I did initially have 'nerve damage' which affected my hands and feet, but not too badly. But, I have not been able to run for 30 yrs and my right hand lost full feeling.

    It was only when I had a 'flare up' in 07 that things got worse...but not as bad as your husband appears...we're all so different. It's good he has an ankle support...was this prescribed through an orthotics department? If not, there are such facilities for "feet" I don't know of any help for hands...but would it be worthwhile asking for a physiotherapy appointment? I seem to remember I did have physio exercises to do 30 yrs ago, when my right hand was described as a "claw hand" and I couldn't close it (i'm right handed and had to try to write with my left hand). Now I can close it and write etc, but do drop things and have difficulty with buttons etc It also seizes up if I try to cut bread.

    I do agree it is very frustrating and you need some advice...get on to your GP or, better still, consultant or specialist nurse...Good Luck!

  • I have terrible problems with my hands and fingers, and sometime my feet swell during summer. The pain in my arms, wrists and hands is unbearable. Despite endless tests I've been told they can't do anything. Suffered henoch schonlein purpura first at childhood since had problems always sporadic with hands but got worse in last ten years. Nerve damage also due to a number of accidents I'm keen to prove it relates to hsp as people simply don't believe me

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