Regenerating Peripheral Nerve pain?

[RareStap]

Having lost use of both feet and one hand, was then diagnosed with Churg-Strauss disease within a few days (I live in France so I was lucky), I am two months on and am getting some feelings back but having a lot of severe discomfort in my legs - I feel as though the nerves are regenerating but can't be sure as information is difficult to come by, and all I get is that if so, it can take a very long time! Has anyone had this situation? I am not complaining as I know how worse off some people are but would really like to hear of other experiences. Many thanks.

[Pollie]

Hello RareStap...sorry you're having such problems. You don't give your age?! We're all different of course!

I was diagnosed with PAN when I was in my early 30s (since changed to Churg Strauss after a flare up in 07 when I was 60) I ,initially, had severe nerve/muscle problems in both feet and one hand and was encouraged to use them as much as possible. After 9 months I managed to get rid of the stick I'd been using..but I held pens, cutlery etc differently and feeling had not returned fully to both feet and my hand. But I could walk independently, though never run, jump etc...and I learned to drive in 1993, having declared "numb feet"!

Since 07, it's been a different matter...but I don't want to discourage you at this point. best wishes..Pollie

[RareStap in reply to Pollie]

Thank you for your reply - it appears I'm 68, not sure how that happened! Will carry on and just hope the discomfort gets less in time!! RareStap

[Pollie in reply to RareStap]

Sorry I didn't explain why I asked your age! It was indicated to me when I had the flare up, at age 61 that any nerve recovery may take much longer and not be complete. However, I already had nerve damage from 27 years previously...so if this is your first time...i do hope you continue to get feeling back...you sound very positive! best wishes again...Pollie

[LynneJ Vasculitis UK Volunteer]

Hi

I was diagnosed with MPA, small vessel vasculitis similar to Churg-Strauss in 2010. I had nerve damage in both feet and my left hand. My experience has been very gradual improvement. At first I have very painful feet which felt like they were wrapped in cling film for a very long time and used to go into a sort of cramp, mainly at night. They were very uncomfortable and I used to try all sorts. Finally settling on warm fluffy bed socks and those microwave warm bags when it was bad. I also had gel innersoles in my trainers (which I still use). Like you it felt like they were regenerating when they were painful so I took it as a good sign. I could not find much info either, only that nerves can re grow but at a very slow pace. This seems to have been the case for me.

However after 3 1/2 years I still have a strange feeling in my feet and a bit of numbness in my hand. Not back to normal but only a nuisance now rather than a problem. It has been very gradual though and I think the key is to keep using them.

I hope this gives you some hope.

Lynne

[RareStap in reply to LynneJ]

Thank you Lynn, this is so like it is for me and that really gives me hope - so good to talk to someone who knows what it is like, and I can do 'nuisance' but a bit bored with 'very uncomfortable'! RareStap

[LynneJ Vasculitis UK Volunteer in reply to RareStap]

Happy to compare notes. The good thing is

[LynneJ Vasculitis UK Volunteer in reply to LynneJ]

Sorry I was saying the really good thing is I can now wear shoes for special occasions. Good luck.

[HiveMind]

This article may prove interesting RareStap.

greenmedinfo.com/blog/6-bod...

[Wellsie]

Peripheral nerves regenerate at a rate of about 1mm per day, so it can take 18 months or more for the nerve to recover, and this will also depend on whether the damage was motor, sensory or both, and where the conduction block(s) occurred.

You will feel itching, pins and needles, where previously you had paralysis and some burning pains along the course of the nerve, as well as cramps as atrophied muscles attempt to re-innervate.

[cambs13]

Hi, isn't it a dam nuisance. I was diagnosed with MPA late January 13. Both feet and my right hand nerves were involved. Fortunately never completely took me off my feet but it interfered with my stand and gait also which shoes I could wear. I found Skechers Go Walk were good for me as they needed to be sturdy enough but not hard so as to feel too tight as the nerves would make my feet so painful when walking. Also got a single electric blanket to go underneath the bottom sheet, it has two programmes of time 1hour and 9 hours with different sets of heat, I place it completely along the bottom of the bed and leave it on for the nine hours and it is so soothing and my feet settle down. Also have a boot type foot warmer for during the day so when sat down can pop my feet in. My hand which is my dominant hand, initially couldn't hold a pen or cutlery then when I did I bypassed the fingers that were involved, that was my thumb, first , middle and some degree my ring finger. I was told that my hand would take approximately nine months and feet two years for my feet. Well a year on and things have improved to my hand as can do so much more, to say it's back to normal would be untrue, but can hold a pen normally and find myself doing things that I couldn't do before. Still a permanent feeling of nerve involvement but getting less. My feet as they said are taking longer. Still feel cold, can trip over when they don't lift as far as I think they have, still feel wrapped in florist's paper that they put around the flowers and my shoes are extremely limited in choice of what I can wear. However, they are improving. I had numbness up my right leg which is slowly getting less. Hang in there, I remember writing to the same members as it all seemed overwhelming. I was feeling so impatient and I suppose cross with my lot, roughly the same time after diagnosis. It does happen but slowly slowly. All the best Pam

[RareStap in reply to cambs13]

Hi Pam, you've got me in one! I do feel a lot more relaxed having read these replies and now have a better idea of what a 'long time' actually means! Thank you so much for writing about your experiences - I had never heard of CSS or vasculitis and the French never tell you anything. So pleased to have found this site and can go forward with less impatience and crossness!! Regards, Sandra RareStap

[hannesjooste]

Patience is the key to handling this, as the politicians say, challenge. I also have a similar periferal neuro problem affecting both feet and one hand. Since about 2 years ago things have improved to a point where I can go about my daily tasks as usual but with effort. Walking feels like one has had one to many - keeping good balance is difficult. Feet pain a lot but using Sketchers, gel inner soles and Tramadol when anticipating lots of walking is the to go.

One also experiences good days and bad days - especially winter time. It is now summer here in South Africa but winter is around the corner. I want to ask Cambs13 about the boor type foot warmer - I need to get one of those for the winter.

All the best

[Katie18]

hi rarestap I also have CSS and suffered nerve damage in both my feet - my right foot much worse. That was two and a half years ago. My consultants told me it was unlikely i would walk again and my physio - who always remained optimistic and positive - said i had the worst case of footdrop he had ever seen.

It took a year before I saw any signs of improvement but now i walk without sticks or foot braces. i have just gone back to doing aerobics and zumba again.

Like others have said things are not back to normal - i have to wear steep orthotics all the time, i still get sore feet at the end of the day and take amitryptiline at night, i find it a struggle to run or jump - but i still know im lucky.

i always kept moving as much as i could - did lots of pilates, swimming and aqua aerobics. i was lucky as a swimming instructor at the gym could see how frustrated i was so she gave me one to one sessions to make it more interesting. i had lots of reflexology and my partner still massages my painful feet most nights- lucky me! i wear wooly socks in bed - my feet still get unusually cold. i saw a few good physios who gave me exercises to do gradually building up to standing in tip toes - and even now pick up a rolled towel with your toes.

just dont give up hope or trying and things should very slowly improve for you. best wishes

[Bowlsjack]

I too have peripheral foot problems. As well as fluffy , loose bed socks I smear my feet with Vicks vapour rub at bed time. I find that my feet settle down and warm up.