Peripheral neuropathy in feet

[Sorop]

I have had peripheral neuropathy in my feet for many years and it has gradually become worse and I am having to put my feet in cold water or put ice socks on several times a day and night as they are burning hot so losing sleep and affects my quality of life as cannot go away much. Does anyone else have the same problems and have any advice on how to cope?

[jimister]

Yes, I have the same problem, and it seems to be getting worse as time goes by. I have had to cut out all food thatcontain sugar and even carbohydrates are causing my feet to burn more. I had pre diabetes for many years without realising and the damage was being done. I cannot tolerate pregablin get bad side effects. I use the socks with cool packs, at night I keep my feet out of the bed to keep them cool, that is the only thing I have to help the pain. I wouldn't wish this on my worst enemy the pain really gets me down. I wish I could give you some tips on helping the pain but I have none. I just know what you are going through as I know what it is like. I also have a fan on my feet at night in the summer.

[Sorop in reply to jimister]

Thank you so much for your reply. I am sorry to hear that you are experiencing the same.

I had type two diabetes in the past caused by high steroids and went on a special diet which was successful but have been having a normal diet for the last couple of years. I had not realised the connection between that and the neuropathy. I will now change my diet back to the low sugar one again although I don't expect it to reverse the damage already done it will hopefully prevent further damage. Best wishes and thank you again. 🙏

[jimister in reply to Sorop]

I found that whenever I eat something that tastes sweet the burning in my feet gets really bad but now it is even too many carbohydrates are doing the same thing. I'm already underweight due to other digestive problems so I am worried about cutting down on carbohydrates too much for fear of losing even more weight. A doctor told me it's the damaged nerves reacting to the sugar. I have small fibre neuropathy I meant to say it's in my fingers as well. If only I knew what damage I was causing from eating too many sugary foods in the past.

[bookish in reply to jimister]

Please get your B12 checked *properly*. Best wishes

[bookish in reply to Sorop]

Please get your B12 checked *properly*. Best wishes

[Lilian15]

25 years ago I had that very same problem. I was diagnosed with pernicious anaemia and after the loading dose I was given B12 injections every 12 weeks regularly. The burning feet, tingling in legs and hands, went completely. Then one day 20 years later my current GP said I did not have PA, it must have been a misdiagnosis, and stopped injections immediately. 3 years later I was suffering with burning feet again, tingling in hands and legs, also extremely tired,

I asked the GP to test B12 again, not just the blood, but parietal cell antibodies and intrinsic factor. Tests came back that I did have pernicious anaemia after all. This is very puzzling because PA in incurable and B12 injections are for life, so even the tests can be inaccurate, as both the GP and a haematologist both told me I did not have it, yet I do, and did. I am now back on B12 injections. Unfortunately they started the injections again as if I had never left off, which was a maintenance dose, whereas they should be aggressively tackling the problem until symptoms improve. Fortunately I have been able to acquire some B12 vials and have been injecting myself and I am now so much better, no more tingling in legs or hands, and although some nights I have hot feet, they are not burning and no longer keep me awake, and I am not so tired during the day. But I have injected the B12 every other day for a month, together with some folic acid.

The biggest worry is that if the condition is left too long before it is treated it can remain permanent, even with B12 injections. I also have diabetes but I had it when I was diagnosed the first time, and when I was told I did not have it, I still had diabetes, and now it is improving again (with the injections), my diabetes has not changed. They cannot put this on being diabetic.

I hope you find some relief soon as it is horrendous.

[bookish in reply to Lilian15]

I am so glad that you are self injecting B12 and making some progress. It is awful how you were treated, but not uncommon, sadly. I am having regular injections but also self inject when I need to. Even without diabetes or pre-diabetes, extra sugar will make neuropathy worse, but as you and I found, nerves can heal and we need to get them the tools to do that - B12 being the main one, but also folate (B9), B2 and the right form of B6 (P5P not pyridoxine). Magnesium can also be very helpful, both as part of methylation along with the B vits, and also for pain. Best wishes

[Sorop in reply to Lilian15]

Thank you so much for replying. I was given a course of b 12 injections when I was first diagnosed with peripheral neuropathy but have not been given any since. I will contact my GP for another blood test and see if I need another course of injections thank you. I had steroid induced type 2 diabetes a few years ago and went on a strict diet and now I am pre diabetic and am now started a restricted diet.

[bookish in reply to Sorop]

Hi. The serum B12 test is not really very useful, especially with neuropathy, as many who get benefit from injections have no signs of deficiency in the blood at all. There are several tests which can be done and any may rule in a deficiency, but there are no tests which can rule it out. Depending on how long it is since you had your injections, you may still have high serum and so may well be told you are ok, when you may actually still have a cellular deficiency. Once on injections, B12 should not be tested again, you have to go by symptom improvement. With neuro symptoms, you should have been given injections every other day until those symptoms stopped improving, then put on a maintenance dose that kept them under control. Did they give you a reason for your initial deficiency? Lack of B12 affects mitochondria (so no energy), methylation and myelin formation before it shows in blood, and it may never do so.

[orangecity41]

I found a nerve cream that helps with my feet peripheral neuropathy.

[1jay]

Hello,

I also have peripheral neuropathy (idiopathic apparently) which brings numb toes and burning feet especially at night disrupting sleep.

A question to those of you that have found your symptoms improve when you limit sugar/carbs - did you discover this by personal trial error or is there research out there that I have missed? I am not diabetic or pre-diabetic but would be very willing to limit sugars if it improved the dreaded symptoms.

Thanks for any input and best wishes to all.

[Lilian15 in reply to 1jay]

When people go low carb they tend to eat more protein, e.g. more meat, fish, eggs etc. and these foods contain B12, so if they do not have pernicious anaemia (where B12 cannot be absorbed through the stomach), they are actually getting more B12. Maybe that is why they are feeling better if their problem was low B12. Lowering carbs, especially sugar, which has no nutrition at all, will improve your general well being. If you are B12 deficient you can always try supplements to see if it helps. The only thing is that if you are going to be tested for B12 you should stop any B12 supplements 4 months before the blood test (haematologist said that). You cannot overdose on B12 as it is water soluble, you will just urinate away any extra.

[bookish in reply to Lilian15]

Just a note that PA isn't the only form of B12D where you cannot absorb and need injections, and that taking an oral/sublingual supplement can skew the test results so badly that you cannot get a diagnosis. Best to test fully first and if any autoimmunity or family history with B12, look at one of the B12 charity sites before going further. Cheers

[1jay in reply to Lilian15]

Oh okay, thats helpful to know the low carb/B12 connection. More food for thought encouraging me to give it a go 😊. Thank you.

[bookish in reply to 1jay]

Just had a quick look at your previous posts and see that you mentioned a high B6. This, like other high Bs (especially also B12 and B9) can be because you are unable to metabolise and are actually cellularly deficient. Sometimes due to variants (very common) in methylation/one carbon metabolism. You could get tested for MTHFR although there are other relevant polymorphisms too, or try supplementing a small dose of the active form of B6, called P5P. The inactive form, pyridoxine, competitively inhibits the active form, so don't use pyridoxine. You may also benefit from a small dose of methylcobalamin or hydroxocobalamin, although injections are the only way to know for sure if it could help or not (oral B12 is not reliable, and can raise blood levels without resolving neuropathy). Also a small dose of methylfolate (B9) - this made a huge difference for me (I had high B9). Best only do one at a time! Magnesium is needed for these processes too, and is very useful for pain - I use an oil spray on the skin. Cheers

[1jay in reply to bookish]

Well that’s a lot to think about, thank you. I am wondering if I am beyond help though as I am 3 years or so in as regards symptoms? What would a ‘small’ dose of P5P be? And any recommendations for quality supplier? Thank you for any input.

[bookish in reply to 1jay]

Hi, there is always the chance to make improvements once you find what is causing the neuropathy, so don't think that you are beyond help! And to be honest, even if not actually deficient, B12 is needed for nerve repair, so would help even with another cause, such as diabetes. I have just started to regain sensation (somewhat painfully I admit, as the nerves repair, but this will pass) in bits of my feet which have had either poor or no feeling for 25 years! I use Metabolics liquid P5P ( metabolics.com/products/vit... ), and you can start with just one drop and see how it goes. I use about 6 drops daily now. I also use their methyltetrahydrofolate liquid and B12 (methylcobalamin), the latter as back up to the injections. Not cheap but good quality and reliable. Keep cool, but don't let them freeze, especially the folate as it loses effectiveness. Best wishes

[1jay in reply to bookish]

Thank you so much for your help and encouragement. I’ll see how I go and will hope to report back at some point. All the best with your own health.

[Pinkdorf]

dear Sorop. I find following helps but not a cure:

DAILY: 300 gabbapentin, 40mg Duloxetine, 40mg Fluoxetine,

I take them all at night and 5 hourly Co-codamol500/30 codeine.

Wet pairs of socks & put in freezer. Bliss at night. I take B12 orally but never had injections. I have raised BP for which I take Atenolol.

Hope you experience some relief

[Sorop in reply to Pinkdorf]

Thank you for replying. Do you get any side effects from the gabbapentin. I suffer with IBS so already have a lot of tummy upsets so have been reluctant to try I but getting desperate now.

[Katerina1]

I have had small fibre neuropathy in my feet and legs for many year. It is agony. Many years of brush off from doctors who didn't believe me. Left the surgery in tears. Eventually they discovered antibodies in a blood test and found I have Sjogren's, an autoimmune condition known to cause small fibre neuropathy. I take pregabalin and top up with codydramol. Most helpful are my cool gel pads which I cool in the fridge plus a cradle to lift bedclothes off my legs. Bought it online. Absolutely no sunlight must touch my legs, otherwise feels as though I have been set on fire. A horrible condition to live with. Hope you find some things that help you.