Gransnet forums

Health

Peripheral Neuropathy

(10 Posts)
nannycake Mon 17-Aug-20 08:11:11

I have been suffering from peripheral neuropathy for some years now....it’s not associated with diabetes or anything else and is in my lower legs and feet. It’s progressing but thankfully really slowly and there are times when it is a struggle to walk my dog because of the fatigue in my legs. Does anyone else have the same condition and if so how do they cope with this illness.?

growstuff Mon 17-Aug-20 13:06:57

I have diabetes-related peripheral neuropathy, which is very painful at times and affects my mobility and my sleep.

I've been prescribed co-dydramol and, more recently, amitriptyline. Neither have much effect and I was especially unhappy about taking co-dydramol long term.

I started taking 650mg a day of alpha lipoic acid about a month ago. So far, I think it's working. I still have numbness and some tingling, but there's less pain.

The NHS won't prescribe it, but it's standard treatment in Germany. I bought mine from Amazon and it wasn't too expensive. It's important to take at least 600mg a day.

I'm always very cautious about taking any medications, so I Googled side effects and there didn't seem to be anything too troublesome, but I guess you might want to talk to your GP.

growstuff Mon 17-Aug-20 13:08:30

PS. If it's not diabetes related, you really should see a GP/specialist and try and find out the cause.

CocoPops Mon 17-Aug-20 21:42:09

I had idiopathic peripheral neuropathy in legs and feet and was prescribed gabapentin which controlled it really well for years. Then I had a spinal anaesthetic for an unrelated operation and guess what? The neuropathy disappeared. So the problem was probably in the spine.

nannycake Tue 18-Aug-20 09:09:56

That really must be a relief for you. It’s interesting too that it has got better. One of the physios suggested my problems could be to do with my spine buthere is no sure way of finding out. Did you have side effects from the gabapentin? I don’t take anything for it at the moment.

nannycake Tue 18-Aug-20 09:19:16

Thank you for getting back to me Growstuff. My neuropathy has been diagnosed by a specialist and I haven’t been offered medication just physiotherapist. Pilates helps a little. I’m going to do some research about the medication you mentioned but If I decide on something I will speak to my GP first.

CocoPops Wed 19-Aug-20 01:53:08

Nannycake I saw a neurologist. The tests were all normal. GP prescribed a low dose of amitriptyline which made me feel really groggy so I was given gabapentine insread . The dose was gradually increased until effective which was a relief. When I stopped taking it after 10 years, I was surprsed to find I felt more "alive" and alert if you see what I mean. It had controlled the neuropathy very well but it had dulled my senses somewhat. It's an anti-convulsant and works on the central nervous system.

Georgesgran Mon 14-Sep-20 08:39:05

DH has PN too - a result of 5 courses of chemotherapy and 3 bouts of sepsis. He has lymphoma. It’s very debilitating, some days considerably worse than others.
He’s trying to stay fit, but it’s an uphill struggle. He takes Pregabalin - gone up to 4x daily now.

Saxifrage Mon 14-Sep-20 09:04:26

I have had peripheral neuropathy for over 10 years. The consultant had no idea of the cause but I suspect it was to do with the fact that I am coeliac and was undiagnosed for years.
I was prescribed Vit B12 injection every 3 months. Not sure if that helps but it has stayed very much the same for years. I sometimes notice that feet are more painful when an injection is due. Occasionally I worry that it will spread to my hands when I get odd twinges but so far it is just feet and lower legs. I find it essential to keep them very warm always. So bed socks and ankle boots most of the year.

Saxifrage Mon 14-Sep-20 09:06:23

Also try to walk every day