Neuropathy

Not myself, but my sister has Peripheral Neuropathy which can be very serious.

Yes.

Our 44 year old son in law has Peripheral Neuropathy in his feet due to the high doses of chemo for his multiple myeloma last year. He had a stem cell transplant and is in remission, but he walks with a stick now and was told it seldom improves. His hands are less affected.

I have peripheral neuropathy in my feet after chemo. They tingle and feel numb It’s almost 15 years since the chemo . My fingers are also affected, I find it difficult when pressing buttons on devices as I either don’t press hard enough or too hard as I can’t feel much. When I was having the chemo ( for lymphoma) I didn’t realise that the tingling was a side effect and by the time I mentioned it the damage was done.

Yep. I have generalised, (all the types of presentation) peripheral neuropathy. No chemo involved. If anyone knows what we can do to help ourselves I would be interested.

Yes I have - fingers and feet. Difficult. Saw GP back in October and was 'referred' but by the time the appointment came we were in lockdown so just had a telephone apt when consultant said 'Yes it sounds like it'! Have another telephone apt next month when I presume he'll say the same!

I think you might be grateful for the telephone appointment eilyann. I think dealing with this made me realise how much time is wasted. All the waste of my time and the consultants at my first appointment with him to be told what you have been told.

Then a useful use of time when I went to be tested so they can find out just what is happening. Then another appointment with the consultant to be told what is happening and, that in 50% of cases they don't know why (idiopathic). I asked what there was I could do to help myself and the reply was "you can contact your GP if you need stronger pain killers" and "I'll see you for another appointment on …" Why couldn't he suggest something, anything where I could feel I was in control - a 10 minute walk each day would have done it.

Yes I have it from chemo. Small price to pay.

I have it in calves and feet. Burning sensation, numbness. Lyrica /Pregabalin helps.

Yes I have neuropathy, have done for several years now , started in my feet and slowly crept up my legs to thighs , also have it in my hands . . I take pregabalin three times daily . I also take vitamin B 12 and multi B vitamins daily , which certainly help . It’s such a terribly painful condition that can cause an awful lot of grief .

It seems that many of the medicines used in helping this were actually used for other things in the first instance which sort of says how much they know about it - not a lot is my feeling.

Interesting to hear about the B vitamins, thank you Dibbydod. I take C & D as my D was very low at the time we found I had this. As it was also the time we found I had low thyroid I am hoping it helps one of them

Has anyone ever been given advice re exercise. I feel that if I could strengthen my back it would help but exercise sometimes makes it worse so I'm a bit cautious. Like you Dibbydod I have it in my hands and arms too. I also have carpal tunnel in both hands. More of the body wearing out I suppose.

DH has this too, following chemo for lymphoma. Pregabalin does help, but treats the symptoms, not the illness which either seems to improve over time, or doesn’t. X

Thankyou grans for your replies its a nasty painful unrecognized disease mines from a herniated disc doesn't seem to be much help other than drugs and it gets worse