Neuropathy in feet and lower legs

I suspect my peripheral neuropathy started as a result of having coeliac disease for some years before being diagnosed. I have now been on B12 injections every 3 months for many years and this seems to stop it getting worse. I also keep my feet as warm as possible at all times. ankle boots during the day and bed socks plus electric blanket at night

SuzieHi
My husband also has had serious Achilles tendon and peripheral neuropathy problems since a course of the antibiotic ofloxacin four years ago. It has been a constant battle to find help from the medical profession although it is being recognized more now as a serious side effect. The symptoms did ease for two years but sadly have now returned.

I find long fleece-lined socks very helpful too, but not in bed as my feet tend to burn soon after getting into bed (so I leap straight back out of bed!)

I agree with annodomini about keeping feet, legs and hands (if affected) warm. I don't like the feeling of heavy bedding and tend to kick it off, so I wear long fleece-lined socks/slippers in bed - and fleece-lined leggings when it's very cold.

Lilliesmum79

Can I ask is restless leg syndrome the same as neuropathy?

No, it's not, but the two often go together.

I have permanent neuropathy and go through bouts of severe RLS every couple of months.

In my case, they have the same underlying cause (diabetes), but they're not the same condition.

Can I ask is restless leg syndrome the same as neuropathy?

It started in my toes and has reached my knees. I'm not diabetic but in my case, it seems to be a side issue of Sjoegen's Syndrome which is auto-immune. There's a Facebook page for sufferers (mainly Americans) but I haven't seen any useful recommendations. The best I can do is to keep my feet and legs warm before I go to bed and keep them warm, if necessary with a hot water bottle . Next winter I will treat myself to an electric blanket. A most welcome Christmas present was a pair of cashmere bedsocks and I've recently acquired an alpaca pair which is equally warm.

I have had quite a variety of drugs prescribed to me in the last year or two and every single one has pages of information attached. There is always a long list of possible side effects often including numbness and even suicide. I've seen that on several information sheets. Many of them list problems I already have, and to be honest it's really scary taking any of them. I'm not saying that ciprofloxacin won't cause neuropathy, just that there are so many other drugs saying they may cause all manner of horrible things. I'm certainly not taking all of those prescribed to me but ideally I don't want to take any of them.

The antibiotic my husband took was ciprofloxacin. Prescribed for a serious infection that didn’t clear with common antibiotics. If you Google it you will see severe side effects can be -
“Problems with ruptured tendons, nerve damage and joints”. We didn’t connect the drug with his problems until on 2 separate occasions prople asked if he had taken that drug at some point, as they had and were suffering the same walking issues.

Thank you all.

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 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.

SuzieHi

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.

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.

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).

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.

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.

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.

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!

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. And.at least it isn't another tablet !

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.
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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.

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

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 😬

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!

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.