Peripheral Neuropathy and Exercise update

[LynneJ]

Today I saw a Physio about a thing unrelated to the MPA. Whilst I was there I thought I would ask him about my foot pain.

He was very interested as he hadn’t heard of Vasculitis and said he would look it up. He said his wife is a GP so will discuss it with her.

(I have raised awareness today!!!)

I started the exercises for Peripheral Neuropathy that I had found on You Tube, 2 days ago. The first night was fine but last night my feet went in cramp again. I had done 5 times the exercises Day 1 but Day two I did them 5 times in the morning and 10 at night.

Anyway he said I had probably done too much and when doing exercises if it hurts to go back a step, not to carry on at that pace because pain suggests trauma but not to give up because it will get the blood supply into the nerves.

He suggested 5 times for two or three days and build up very gradually.

He is also going to check to see if he can find any specific exercises for nerve pain and will tell me next week. I thought that was very kind of him.

Will let you all know what he says if it is useful.

He also said that nerves can heal over time.

My MPA is under control but the left overs are a real pain so I am grateful for any suggestions. I feel at last I have some control now by finding out all I can.

[John_Mills Volunteer]

It is great you have raised a little more awareness. John thinks that all informed patients are empowered. Let us know how the exercises go. Your Physio sounded a real nice guy

[gibson100]

Hello Lynne,

I have severe nerve damage in my feet as a result of vasculitis(MPA0) and /or drug treatment .It came on suddenly in May last year after a high dose of steroid and cyclophosphimide infusion .

Very slowly it has been getting a bit better.There are a few things I find useful for the discomfort cused by periperal neuropathy..

I recently got some magnetic insoles for my shoes.I read about these and was a bit sceptical but willing to try anything.They are not a miracle cure but do relieve the burning sensation and I am able to stand and walk for longer periods.I dont think it is just my imagination!

I bought a Scholl percussion massager.This was suggested by friend who gets a lot of sports related muscle/nerve pain.It works a treat and comes complete with a detachable long handle for DIY foot massage.

Self hypnosis.I researched some of the most popular techniques with Dr Google After a bit of trial and error I found a couple that work for me.

All this sounds a bit hippy dippy & new age but I find these things preferable to yet more drugs.

Let me know if you would like further info.

Regards,

Chris

[LynneJ Vasculitis UK Volunteer]

Thanks for that, any thing is worth a try as there doesn't seem to be medical thing that can be done. Since my post I have been steadily improving. Touch wood the cramping seems to have stopped. I wont pretend my feet are perfect yet but improving slowly a bit at a time. I do find the more I use them the better they get so I try to walk a lot more. I like a bit of hippy dippy!!! I also use deep relaxation and go to a traditional accupuncturist.

There are quite a few of us who have problems with nerve damage and dodgy feet. So if you find anything else perhaps you would like do a new blog for us all.

[Derek]

After diagnosis and progression of CSS my neuro consultant advised that damaged nerves can take 2 years to repair themselves. The repair process starts with the nerves furthest from the extremities and very slowly working towards them. I assumed after 2 years the healing process slowed down/stopped and any further nerve recovery was a bonus!