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Neuropathy in feet and lower legs

(34 Posts)
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.

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.

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.

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

I have it in hands and 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

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.

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.

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.

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.

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.

pipsqueak99 Thu 16-Feb-23 19:22:51

I have peripheral neuropathy, in my feet and lower legs. It doesn't really cause me any pain, but I have big problems with my balance and need to use a walking stick when out. I have just started a Strength and Balance class for older adults, but so far it hasn't made any difference, I will persevere though. I also hope some research is being done into the condition.

Mouseybrown60 Fri 17-Feb-23 11:21:23

Thanks for your replies. I guess that I will learn to live with the condition. At least I know that I’m not the only one!

Shinamae Fri 17-Feb-23 11:28:20

Yes, I have had it for a few months now and my doctor has done all the tests and he is putting it down to long Covid 😬

jessycake Fri 17-Feb-23 11:35:51

I have this too , I think it is linked to covid in my case

Doodle Fri 17-Feb-23 11:55:28

Very interesting thread for me. DH has recently been diagnosed with PN but without cause. Not diabetic and no problems with B12. It was diagnosed due to having a number of falls. Mostly he suffers from terrible RLS which keeps him up walking at night.
DH doesn’t have pain but like others here has terrible balance problems and has also just started a balance class for 6 weeks.
DH is taking pregabalin but is still suffering every night from RLS.
Would those on pregabalin mind sharing what dosage they’re on and if it helps? DH is on 100mg but is finding it isn’t helping enough. My sympathies to all those who suffer this awful problem.

Soozikinzi Fri 17-Feb-23 13:20:48

My husband has this and RLS he's on a variety of heart među after a strke and blood thinners so I don't know if they've caused it ? He takes pramipeole for tge restless legs he also has a therapulse and a revitive thing that sends electrical impulses to his lower legs which do seem to help. least it isn't another tablet !

SuzieHi Fri 17-Feb-23 13:21:15

Husband has neuropathy. Balance was deteriorating and he fell frequently. Friend recommended Turbomed splints which are brilliant. They help you walk properly / give confidence back. Designed initially for athletes after injury. Google them! Need fitting by an expert- physio or from the company. Expensive ( around £1000) but friend did get his through NHS initially. Also you can get hand controls fitted to your car (£1000 roughly). Have to let DVLA & ins know. Google again!

SuzieHi Fri 17-Feb-23 13:23:36

We think husbands started after a particular Anti - biotic. Not a usual one, but prescribed after a common one didn’t work. Have met 2 other people with Neuropathy who actually asked if he’d taken that drug! He had.

Delila Fri 17-Feb-23 13:29:38

Yes, Doodle, I have restless legs too, as part of my PN diagnosis. The self-help things I mentioned above help with RLS symptoms too (usually involving getting out of bed when it’s the last thing in the world you want to do☹️).

Luckily I don’t get pain either, but balance isn’t good. I hope your husband will find he has times when the PN doesn’t bother him too much.

Doodle Fri 17-Feb-23 13:52:44

Thank you Delia . DH does do stretching exercises as advised in physio. He can’t stand on tip toes as all his toes have been broken and re set but he can stretch his foot and ankle. DH went for years without meds but it became too much in the end. He was beside himself with the irritation. The meds do help but he’s up two or three times a night for between ½ hour to 1 ½ hours trying to walk it off. I walk with him as I’m afraid he’ll fall over. We are like a couple of old zombies by the end of the night.

Delila Fri 17-Feb-23 14:15:24

Yes, I can imagine! Not good for either of you. Stretching the feet and ankles is helpful. Also walking barefoot or in warm socks with gripping soles, as the action of the foot against the floor is helpful (helps me at least).

Chestnut Fri 17-Feb-23 14:52:39

I was diagnosed 2 per day of Pregabalin 25mg but only take one. I heard it also works as an antidepressant. I'm not sure it if helps or not, which is why I just take one. However, I find Baclofen 10mg does help and I take 3 per day. The specialist also prescribed Gabapentin 300mg taking 1-3 daily but I shan't take them unless the pain gets unbearable. Just remember, all these drugs work differently on different people, so you have to find what is best for you. Just because something works for someone else doesn't mean it will work for you.

Chestnut Fri 17-Feb-23 14:54:02


We think husbands started after a particular Anti - biotic. Not a usual one, but prescribed after a common one didn’t work. Have met 2 other people with Neuropathy who actually asked if he’d taken that drug! He had.

What is the name of the antibiotic? Might be best avoided for the family to be honest.

Chestnut Fri 17-Feb-23 15:07:26

Doodle Would those on pregabalin mind sharing what dosage they’re on and if it helps? DH is on 100mg but is finding it isn’t helping enough.
As I said, I only take 25mg per day and I'm not sure if it helps or not, but the leaflet says the dose is 'generally' 150mg to 600mg so maybe your husband could ask for a higher dose? Otherwise maybe try something else (as I mentioned). You really both need some sleep so keep persevering.

nannycake Fri 17-Feb-23 20:47:43

I too think my neuropathy started after taking large doses of antibiotics but my GP disagreed with me. I’ve have neuropathy for over 30 years and I’m 75 now and every winter, because of the cold it gets slightly worse. This year my balance is causing me concern so I do lots of exercises which does help a little and walk my dog twice a day but just for half an hour. I’ve discovered not eating a lot of sweet things or drinking alcohol really helps the neuropathy and RLS. There is a very helpful website on Facebook called Success stories for Peripheral Neuropathy which I find helpful. It’s best to stay positive about what you can do.

Doodle Fri 17-Feb-23 20:57:32

Thank you all.