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Neuropathy in feet and lower legs

(34 Posts)
Thorntrees Thu 16-Feb-23 19:11:51

It’s 15 years since I has chemo and one of the drugs used has the side effect of causing PN,it’s never gone away.Worse in my feet, but also my finger tips. It’s not really painful unless my feet or fingers get really cold so I feel quite lucky as I know it can be very distressing. I’ve got used to the tingly feeling over time.

Georgesgran Thu 16-Feb-23 18:45:19

DH got PN through multiple chemotherapies. He took Pregabalin and was told to spread the doses throughout the day, but to experiment to get the better results. As for the PN, he was told it was irreversible and would probably get worse. He became quite unsteady on his feet, as he couldn’t feel where they were and therefore, reluctant (eventually gave up altogether) to drive, for the same reason. For him, it was a cruel ‘side effect’ of his equally cruel illness.

Grandmabatty Thu 16-Feb-23 18:36:03

I have it in my feet and lower legs too but mine is diabetes induced. It has been worse lately and so painful at night at times. My legs and feet get really cold too. Occasionally I get spasms in my hands. I don't take anything for it at the moment as I can put up with it. But my sympathies to all fellow sufferers.

Chestnut Thu 16-Feb-23 18:12:10

I've had it getting increasingly worse for about 20 years, although it wasn't bad at first. It started in my toes and now goes right up to my hips. I don't know why I have it, I don't have diabetes. I take Baclofen because I started getting terrible spasms and Pregabalin is another that might help. Don't take anything until you have to, just keep exercising and eating heathy.

Coolgran65 Thu 16-Feb-23 18:04:40

I have diabetic neuropathy and it is awful at times. Added to my 24/7 restless legs syndrome. I take pregabalin which helps. When it's playing up I use a prescribed moisturiser and use it to massage my lower limbs. This often helps, as does getting up and walking.

LOUISA1523 Thu 16-Feb-23 17:59:26

I have it in hands and feet....it was a result of chemo 3 years ago....I've tried pregablin... now on duloxetine ....myblo9ds are spot on so no deficiencies that I know of.....just got used to it now I guess

Delila Thu 16-Feb-23 17:51:37

Yes, I have this too, cause unknown - although neurologist suggested exposure to something toxic. I’ve had it for several years and its severity fluctuates.

I don’t take any medication, my neurologist advised me not to. Wearing fleecy slipper socks in the evening so that my feet can feel the floor more than is possible in shoes or slippers helps in my case, also standing on extreme tiptoe during an attack, which usually means getting out of bed just as I’m falling asleep. Sometimes I have to get out of bed and walk around in a zombie-like state, and that helps too.

It’s a cruel condition, especially as it often disrupts sleep, but I think it’s possible to improve things with little self-help tricks that, if you’re lucky, will work for you. For me it’s been trial and error.

I hope you find something that helps you. And yes, roll on a treatment that works! I hope someone clever is doing some research.

growstuff Thu 16-Feb-23 17:28:03

Yes, I do. Mine is diabetic neuropathy. Test won't show nerve damage. I've had it for years and if anybody ever comes up with any treatment, I'd like to be front of the queue to hear about it. I take painkillers when it all gets too much and especially when I can't sleep.

Mouseybrown60 Thu 16-Feb-23 17:20:53

I have been suffering with this neuropathy constantly since September. I’ve been tested for diabetes, vitamin B12, C and D deficiency and also had a Doppler scan to check my circulation.
All negative. I’ve tried 4 different types of drugs but nothing helps.
Does anyone else have this problem and if so has anything helped? I exercise, use a static bike to keep moving as I had a left knee replacement in 2018 which has only been partially successful.
I had chemotherapy years ago but I don’t think it could cause this 11 years afterwards.