I have had peripheral neuropathy in my lower limbs for about 3 years now. According to my cardiologist it is a side effect of taking Amiodorone. I took this for AF. I now have permanent Af because I was not able to get treatment during pandemic. Only 30% chance of success with ablation since I have been in permanent Af for more than a year.
I take Gabapentin for the peripheral neuropathy but it isn't very effective. The pain affects me at night and is worse some nights more than others. It is like sunburn and affects different parts of my lower limbs. I have tried Tramadol but didn't suit me. Does anyone suffer from this and do you have any suggestions? I was wondering if massage or a cream would help.
I spoke to the neurologist on the phone and he suggested doubling the dose of gabapentin but I am reluctant to do this because of the side effects.. Also suggested a weekly patch on my arm containing something like morphine but that seems a bit extreme.
I do not sleep well because of the pain so any advice would be appreciated.
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Pippa80
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I have a condition called small fiber neuropathy affecting my legs hands & feet , I was advised that nerve pain / neuropathy should be treated with amytriptyline & or gabapentin, I couldn't tolerate either of them ,I just use heat or cold depending which awful sensation is torturing me at the time , hope you get some relief soon xx
I've had small fibre neuropathy after I was poisoned with fluoroquinolones that I should never have been prescribed. They did a lot of damage and have probably shortened my life.
My understanding is that gabapentin is one of those meds where the dose keeps needing to be increased to get the same effects as previously. I didn't want go down that route.
Instead I changed my diet. I only eat clean whole foods and avoid all refined carbohydrates. I rarely suffer nerve pain now but it did take many months to heal. I also find that if I eat too many foods high in histamine that I can start having nerve issues. This might just be peculiar to my situation though.
I have never heard of fluoroquinolones before, so looked it up, antibiotics.I try to eat healthily and find the pain does vary so it may be what I eat that day, exercise, or less stress. Which foods are high in histamine? That may help..Thanks for your interest.
Some foods are naturally high in histamine like strawberries, kiwi, deadly nightshades, cured meats and anything fermented (red wine is particularly bad with me). In other foods like meat and fish histamines can quickly develop as the meat ages, so leftovers can be problematic. I've included a link to a good guide.
Thank you for the link. I will look at that, very interesting don’t want to take another drug for this condition because it was Amiodorone which caused it in the first place, which didn’t stop my Af anyway. I try to eat healthily since am prediabetic as well but some fruit contains more sugar than others, berries seem to be the best.
I’ve had peripheral neuropathy in my legs for over 15 years and my symptoms are the same as yours. Came off gabapentin years ago as it no longer helped, even on the highest dose. Found a cream my family and I call “magic cream”. It’s “Radian B Muscle Rub” and has been a complete game changer. Sorts the pain almost instantly. It is also very effect when I have a sciatica flare up. Used to buy at Boots but now don’t supply. I buy in bulk from Amazon. I’ve recommended to dozens of people. It truly is “magic” as the pain can be unbearable so you have my sympathies. Hope this helps. Take care. Kate
Thanks Kate for your advice. I shall try that cream, hope it helps. I get so tired during the day through poor sleep. My GP’s advice was to “stick them in a bucket of water” needless to say I try to see another GP if I can!
Not surprised you see another GP. The cream’s “magic” ingredient is capsicum and although you can get this on prescription I found the strength was too much and left me with a burning sensation. Much prefer Radian B. Hope it helps.
My neuropathy is a burning feeling, not pain, which happens when any part of my body is touching the back of a chair, bed etc. I tried Lyrica and Gabapentin with no relief and horrible side effects. I'm now on Lamotrigine which helps a bit. I also have axonal neuropathy in my lower limbs. I have read of quinine as a possible source. I took an anti-malarial drug on a cruise to Papua New Guinea so wonder if that's the cause of mine.
Thanks for your reply. I also get a burning feeling like sunburn but mainly at night. It comes on when I am asleep and wakes me up so I have a restless night. I have not tried Lamotrigine, will mention it to GP whenever I can get to see him,! Coincidentally I lived in Papua New Guinea for 3 years , about 40 years ago. Loved it there but not as safe now. We lived in Lae.
Hi I have it in my feet and hands it's like sore pins and needles and the pain is worse at night. I keep my feet raised and out the bed. I have been taking amitriptyline for about two years but recently I have noticed that it seems to be getting more painful. I think I will have to go back to the doctor's at some point. Char
Yes I find the pain worse at night but I have it in my lower limbs not my hands. It helps if I stick my feet out of bed but too uncomfortable to sleep like that. It’s easier in summer because have less covers on. I may try keeping my feet raised. I do sympathise with you and I hope you get an alternative to amitriptyline. Thanks for your reply.
I have had it for years and now it feels like I am walking on bubble wrap lego.
Have you had ALL your vitamins and trace elements checked, as this can cause it if one of them is low, especially Vit B12. You may have to test privately as GPs dont seem to think vitamins are important.
I grow most of my own veg, have hens for eggs and the odd animal for the freezer. It is not so much about diet, it is more if you are absorbing the right stuff.
I did find drinking tonic water with the quinine in it helped. I left out the gin. Drunk with numb feet is not a good idea. Hope this helps.
No I haven’t had my vitamins & trace elements checked. I have only had routine blood tests. I will mention that to GP when / if I see him. The last time I saw him all he said “what do you expect at your age”. I always try to see another GP now if I can! I will try the tonic water. Thanks for your advice. I hope your condition improves.
I have had perpheral neuropathy in my feet for a number of years. It was such an odd sensation that I couldn't work out how to describe it to my GP, so left it for a while. When I mentioned it I had what was obviously a Vit B12 blood test, but didn't tell. He just said 'nothing had shown up'. I read about it being connected to B12 several months later, but he said I was in the normal range, and in any case you would need to be deficient for a long time before it would have that effect. Having read more, I know I was deficient, and could have been deficient for a while, having never had a test before. I did have 2 sets of neurological tests. One was a very condescending consultant who sort of said it was my age. Another very nice GP arranged tests but could find no neurological reason. I have taken Amitryptiline for a number of years, which doesn't help much now It has been mainly discomfort until recently. I am now finding it quite painful,,particularly at night, as others seem to. It's as if someone is hammering nails into my toes periodically. I have tried Capsaicin cream on my painful arthritic thumbs, but found it difficult to clean it off my hands so risking sensitive areas burning painfully. Maybe the Radian would be better.
I have concluded my nerves were damaged permanently by B12 deficiency, so it's a matter of managing it. Seems difficult to manage it successfully.
I am sorry you have received permanent damage to the nerves in your feet. It seems it is hard to recover from peripheral neuropathy. I suppose we have to cope with it the best way we can. I will try to get a B12 blood test, to see what my level is. I hope you get some relief from pain by using the Radian cream. The pain is very debilitating.
Thanks for your kind response. It seems as though people have peripheral neuropathy from a range of causes.
I would just say about Vit B12 testing is that there is a lot of ignorance about it. It is quite a complex issue. Different areas seem to have different 'normal levels', and people are affected in varied ways. There is no 'gold standard' test.
As a rule of thumb If your level is below 200 you could be deficient. One GP told me 158 was within the normal range, more recently a GP in a different area told me that meant I was low.
There is quite a lot on the internet, but it can make you feel as though it's all too complicated. Good luck.
Yes, mine was caused by Amiodorone . I was on it for too long due to lock down and not being able to see a doctor. I couldn’t have treatment for my Af and so it is now permanent and my heart rate is controlled by Diltiaziem. Thanks for the info about B12 although the damage is probably permanent now since I have been off Amiodorone for a while now but the pain seems to be getting worse. Thanks again.
Hi I do really feel for you with this as it is horrible. I also have this/ have had this: it is a lot better now. I used to have to stick my legs out from under the sheets at night too, even in freezing cold weather, to cool the burning and 'crawling' sensation. I discovered that doing a very short cold shower (just a few seconds) after my hot wash before bed, really helped as hot water sets it off, and the cold water helped. I learned this on Wim Hof's free online mini course. But with your AF you may want to go cautiously with this....The calm breathing is key that he also teaches. And I agree certain foods seem to make this worse as they can increase general inflammation. A good B vitamin Complex seems to help definitely. Also, not having a duvet. I can only tolerate natural fibres: soft cotton sheets (ie high thread count & a good make) and a wool blanket/s & cotton bedspread. Soft cotton sheets make a HUGE difference, polycotton sets it off big time. (Along the same vein, only cotton nightwear). Also the moisturizer on my legs makes a difference, I use Jojoba Company joboba oil (pure). Took me ages to find a moisturizer that was calming and not aggravating me, and also it absorbs quickly. One last thing, Amitriptyline 25mg (very low dose) at night can really help neuropathic pain and may be worth a try as others have said, but I am very sensitive to medications so have not tried it. But it is the LOW dose that is key apparently. Let us know how it goes for you. So sorry this happened, I do wish you improvement...
Thank you so much for your response. It is very helpful. I don’t know about the cold shower but it does help if I put my legs under the cold tap after a shower. I do have a duvet but with cotton sheets and nightwear. In summer it is easier because I can sleep with just a sheet over me. I have bought a weighted blanket but haven’t tried it out yet, I would have to sleep in spare room if I did because wouldn’t suit OH.! I will try the moisturiser you recommend, and also ask GP for Amitriptyline since Gabapentin is not helping.I am pleased your condition has improved. I was told by neurologist that it was irreversible. Thanks again for your advice.
Yes, you are right, the effect wears off after a while. Although, at the moment my other medication seems to be effective. Gabapentin has never really helped much so I will try amitryptiline and see how I get on. I hope your condition improves.
Hi and you are welcome. It is truly horrible to live with, and I believe it can improve. Do take a look at the free online Wim Hof mini course, class 1 is breathing, class 2 is cold therapyexplore.wimhofmethod.com/mi... . Also it is definitely worth trying a wool blanket on top of the sheet as a duvet sets it off big time for me. Its a hassle but when we go on holiday I have to take my bedding with me. I hope it improves and that the 25mg Amitriptyline at night might help. I know a lot of folks with neuropathy that it works for. If I think of anything else I will let you know. very best wishes to you x
Thanks I will certainly take your advice because I am feeling really down at the moment, at the thought of having to put up with this condition forever. You have made me hopeful that it can be improved. Many thanks, I will let you know how I get on.
I just thought of some other things I did to help me: - a diet that is 'anti-inflammatory' eg the Pioppi diet which is great for heart health, this book written by a cardiologist: amazon.co.uk/Pioppi-Diet-21... - And Dr Joe Dispenza's book 'you are the Placebo' gave me tremendous hope, if you read it you l will see why, & this method really helped with pain reduction and a lighter mood when I was terribly down & fearful about it all amazon.co.uk/You-Are-Placeb... This was a pretty major part of my recovery from the neuropathy which I forgot to mention!
Thank you so much for all your help. I certainly appreciate your kindness and concern. I am pleased you have recovered from neuropathy. The neurologist told me that it was permanent, which was very depressing. I will look at your recommendations and feel more reassured now.
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