Small Fibre Neuropathy in feet

[Karjade]

I have small fibre neuropathy in my feet and I would like to know what medication you take if any and does it help especially with the burning and numbness in the feet. I was prescribed with a low dose of amitriptyline which does not really help except gives me a good night's sleep. Also if anybody uses anything natural which helps without resorting to medication and the awful side effects. I would be very grateful for your comments xx

[martino]

Perhaps not what you want to hear but I use Gabapentin and it works. I don’t have side effects but I understand that other people do. I have also been using Tramadol but am not sure how good that is for neuropathic pain

[Karjade in reply to martino]

Hi. Thank you for replying. I took Gabapentin for about a month and had awful side effects. I agree with you that everybody is different and some take medication without any side effects and some can't. I am one of those that can't. I have never taken tramadol but have taken cocodamol and just felt nauseas all the time. I am glad Gabapentin works for you and I wish I could something natural without side effects that helps me with the constant burning and tingling in my feet xxx

[Schoeytravels]

Sorry to hear you are struggling. At one point in my journey I was put on methotrexate and it made me really ill, so I understand your wish to avoid medication. However, I am now on gabapentin and tramadol and this combinations works well for me. So I think it is just a case of finding the right thing for you. You could go back to the doctor and ask to try something else.

I think it is unlikely that you will find a natural treatment that works well for neuropathy from anywhere like Holland and Barrett. You could explore the CBD route?

I hope you find something that works and feel better soon. 🙂

[Karjade in reply to Schoeytravels]

I am from the UK and we have a Holland & Barrett and they sell natural CBD oil but I have never tried it. Have you ever tried it? Amitriptyline makes me feel extremely anxious at any dose and I have tried three times now to get off it. When my feet are bad I just go back on it. I don't know why as it does not really help but I can't seem to stop it. I think I will try the Holland & Barrett CBD oil as I have nothing to lose. Thank you for your reply xxx

[Schoeytravels in reply to Karjade]

Hi there. You could try Simply-cbd.co.uk

I haven’t heard of anyone who finds the Holland and Barrett one helpful but you could try it. If not, I have heard that people like the purple or the black product from Simply CBD and that if you email the website the guy will give you advice. I have no experience of it myself because my meds are working, but this is where I’d go next if meds didn’t help me. I would advise discussing it with you doctor though. Hope you find something that works for you. Xxx

[Karjade in reply to Schoeytravels]

Thank you so much. I will have a look at this website and let you know how I get on if I order some. I do not know much about CBD oil only what I have seen on the television so I am scared of going from one addictive drug to another! xxx

[Schoeytravels in reply to Karjade]

They have taken the addictive part out of it as far as I’m aware.

[Hidden in reply to Schoeytravels]

Seems such a mystery at this point to me. Granni B

[viv112]

Do you get the pains in your feet all the time? If you have good days and bad days it might be worth thinking about what you have eaten or drunk because some foods can trigger it and make it worse eg.sugar. Also think about what you have worn on your feet, whether you need wider shoes or orthotics. My main problem is sensory ataxia caused by lack of proprioception in my feet and numbness so my walking and balance are affected. But on the occasions when burning pain keeps me awake (often my left big toe!!) I take valerian tablets which usually send me off to sleep.

[Hidden in reply to viv112]

Is valerian sold over the counter? Granni B

[Karjade in reply to Hidden]

I got mine from eBay xx

[Hidden in reply to Karjade]

Thanks, good to know no prescription is needed. Granni B

[Karjade]

The burning and tingling is there all the time. It does not wake me up in the night but they are burning and tingling when I wake up in the morning. If I walk my dog too much I have a flare up which lasts a few days. I am finding it really difficult to live with and I think it is why I reach for the amitriptyline as it makes me sleep. I have tried Valerian capsules and Rescue Remedy and they do not really help me. I have been to a podiatrist and paid a lot of money for inserts but they gave me terrible pain in the arches of my feet. I have tried to go gluten free but it was very hard but it is something I will try again. Are you on any medication?

[Hidden in reply to Karjade]

I used the Rescue Remedy after my son`s motorbike crash. It did seem to relax my shattered nerves. Thank God he is doing better. So l was thinking of giving it another try. But will only try one thing at a time to judge if it works for me. Granni B

[Karjade in reply to Hidden]

I have tried Kalm tablets, Rescue Remedy and Valerian tablets. Unfortunately nothing has worked for me! I do not want to go on antidepressants as I am sure I will get side effects. If I could guarantee my anxiety would not get worse and it helped I would try anything preferably natural though xx

[Hidden in reply to Karjade]

I feel the same about antidepressants...tried one years ago. Did not go well for me. I would have bought rescue remedy today but hurt too bad to go to store. Hope tomorrow will be better.

[Karjade in reply to Hidden]

Hope you are feeling better today. The Rescue Remedy works for some people so maybe it will work for you. Good luck xxx

[viv112]

Hi. I don't know if you are in the uk where you can be referred to a podiatrist by your GP and get free inserts. But like you I couldn't tolerate the hard ones which made my feet hurt. My chiropodist offered me some soft Spenco ones which have arch supports and I can easily put them in trainers. You can get them on eBay I think. I can only wear shoes which support my foot so most fashion shoes and sandals are out. I also use stick on leather arch supports which you can position and stick into your shoes from GG footcare.

I have sensory polyneuronothapy and fortunately I don't get pain every day. My pain is a stabbing electric shock pain that can start in different places and carry on for about 48hrs. I have associated it as coming after eating certain foods with additives or salicylic acid but the neurologists don't see a connection there. They have offered me the lot, pregabalin, gabapentin and amitryptaline but because I don't want to take medication 24/7 they don't work for me as a pain relief to just use if and when.

I actually find that getting up and moving around makes it more tolerable. But I have to say that if I had these pains every day I would definitely need to take something to help me manage it.

[Karjade in reply to viv112]

I am from the UK. Our doctors will not refer you to a chiropodist on the NHS now unless you have diabetes which I haven't. I paid quite a lot of money to see a podiatrist and she measured me up for inserts which hurt my feet even more. I wear Sketchers shoes which have memory foam inside. I have tried acupuncture as well in my feet and had three sessions but that made no difference. Nothing seems to work and my doctor and the neurologist said there is nothing more they can do other than medication. I would be willing to take medication if I did not get any side effects. I will concentrate on my diet more. My main problems are the burning, tingling and numbness in my feet but not pain. I thank God it is not throughout my body as I would never cope with that. My neurologist said it will stay in my feet and not spread so that is one thing I have to be grateful for! Thank you for your help xxx

[maryemma in reply to Karjade]

Hi I know this is avery old post ,but like me people may be look through these.I am bad at taking medication and have P.N. In my feet and lower legs .I am 79female.I do exercises from u tube for it ,seated as its for seniors they are many I follow a young man physo. really good .I also go to a class in my local church hall called a SMILE clas for over 60s or any age with a disabilaty.look it up. I have a,so got rubbing ointment from amazon to rub in some nights .and cold slippers that you put in the freezer first and use in the summer at bedtime.I meds free. I hope this helps someone .Good Luck.😇

[Karjade in reply to maryemma]

in five years my peripheral neuropathy has got so much worse. I am on Gabapentin now but it does not help much. I was told at the beginning of my PN journey that I had small fibre neuropathy and it will stay in my feet but they were wrong! It has spread to my legs, hands and balance. I had a lot of blood tests at another hospital and they have now diagnosed me with Anti-MAG peripheral neuropathy which is a very rare disease. I have also been diagnosed with Raynaud’s syndrome so now under a Rheumatologist. I have tried everything natural but nothing has worked for me. How long have you had neuropathy?

[maryemma in reply to Karjade]

Hi, about seven years ,try listening to the honest guys meditations on u tube when you are awake at night,they really relax you ,not a cure but relaxing helps. Good luck 🙏

[Karjade in reply to maryemma]

thank you. Has your neuropathy progressed rapidly in the last seven years or just stayed the same in your feet and legs?

[Hilsho47]

Hello Karjade. When I was diagnosed with small fibre neuropathy 3 years ago I was also prescribed amitriptyline at first and like you it gave me a good night's sleep but didn't help my foot and leg symptoms. Before I started taking Gabapentin (which fortunately doesn't give me any undue side effects), I was prescribed pregabalin. Have you tried this? I hope that you soon find something that helps you. I have never heard of any natural remedies that may help, unfortunately

[Karjade in reply to Hilsho47]

Hi. No I have not tried Pregabalin. Is this the same as Lyrica? I am really trying to get off amitriptyline but just cannot get through the side effects. I am only on a very low dose but I am finding it totally impossible to completely stop. I have had small fibre neuropathy in my feet for about 18 months and I am finding it so difficult to live with. I have tried so many natural things but nothing works. The only thing left now is trying to live with it but how can you do that?? I have to stop searching as this is what is causing me severe anxiety which makes my feet worse. How do you cope? Thank you for your reply xx

[Karjade]

Thank you. I will try it as anything is worth trying when you are desperate. I have not had amitriptyline for about three weeks but really struggling xxx

[Boxer30]

I have read your post and I suffer from massive pain in my feet from burning, stabbing, cramping and sometimes it feels like someone is shocking my foot. I have been diagnosed with this disease google.com/amp/s/www.practi... following several back surgeries leaving me with scar tissue. I also had an injection which could of caused it. If you read this article, I do know it is long, there are some medications accompanied by vitamin E which do help alleviate the pain. I do not know if any of them will help you. I use, gabapentin at a fairly high dose and I've had no side effects to-date, 800mg ibuprofen (this really helps my inflammation), along with some opiates (I do understand that many people do not want to use this, but honestly I have no choice) and Nortriptyline at night. I sleep with my back elevated which seems to help at night. I get up everyday at 5 am and go to work. The daytime my feet are not as bad, maybe its because my mind is busy?? I also use the IQ Technologies massager. I found it on Ebay for an amazing price. I use the back belt and the slippers that are associated with it. Oh an one last thing, I use lidocaine patches I put them on my lower back area and on my foot. This also helps with the inflammation. Everyone is different and although I use medication, I thought maybe you would find some things that I do which might help you. Did the CBD oil help you?

[Hidden in reply to Boxer30]

Thank you for suggesting the site. Granni B

[Karjade]

Thank you for all your helpful information. I did read the article which was very interesting. After taking amitriptyline and the awful side effects I have at the moment tried to keep away from all this sort of medication. I have ordered some Alpha Lipoic Acid which Grincho (above) suggested to try. I have not tried CBD oil but I did go into our local health store Holland and Barrett and asked about it. She said here in the UK they are not allowed to comment on it but it was so expensive so I did not bother. My doctor just keeps saying that there is nothing that can be done which is very scary but I keep trying. Too much walking flares my feet up so my real pleasure in life has been taken away from me which is walking my two golden retrievers. I am managing shorter walks but I will not give that up as it helps with the anxiety I now have through this horrible condition. I had a couple of sessions of acupuncture which I am not sure helped but I will go back and he is also a McTimony chiropractor and that helped my lower back. I will keep trying anything natural and only as a last resort will I go back on Amitriptyline or similar. Thank you for your message as I really appreciate any help xx

[Karjade]

I have ordered some Alpha Lipoic Acid and will try this. Was not sure what strength to order but got the highest strength of 600 mg and will take one a day. Thank you xx

[Karjade]

Yes I will let you know. I just hope it helps with the burning at least xxx

[Boxer30]

I keep getting up everyday myself. I feel that with me, sleeping with my head elevated and eating less carbohydrates DOES help me a lot. I also elevate my feet when I sleep also. I was lucky enough that when I purchased my bed, I bought the mattress which has the frame that elevates my head. My pillows inadvertantly end up on the floor every morning with elevating my feet. It's worth a try. Try not eating any carbohydrates for a few days and see if you see a big difference. I know I see a very big difference!

[Karjade]

I have an adjustable bed but cannot sleep with it elevated as I have a bad neck. I will cut down on carbs to see if this helps as anything is worth a try. However not sure what carbs actually are but will check on google. I love walking and cannot get over the fact that this really irritates my feet as it devastates me that I cannot walk very far with my dogs. Walking is what helped me with anxiety and I now feel something else has been snatched away. I feel so low at the moment which is what anxiety and neuropathy has done to me but I am a fighter and will keep searching xxxx

[Boxer30 in reply to Karjade]

I completely understand as I have had my disc blow out in my neck pinning nerves against my spinal cord; I had emergency surgery. J have two pooches myself and I adore them tremendously! I get it, honestly I do. Carbohydrates are white bread, pasta, white rice etc. Sugar also makes it worse for me but not as bad as carbs. I hope you feel better soon! Much luck!

[Karjade in reply to Boxer30]

Thank you. Also hope you will feel better as well and if you find anything that helps please let me know xxx

[Hidden]

Good morning all. I have not posted much as l have been busy trying to figure out my pain. Falling was my big problem...78 times in one year... l am 70.

I thought l had PSP like my mom had & did not go to Dr because l knew there was no treatment. When l did get checked out & was told l had Neuropathy imagine my surprise when told there is nothing l could do to get better. My neurologist said use a cane or walker so l don`t fall down. I was already using a cane & had bought a walker before my 1st visit with him.

My left side is the worst. Foot is numb...gee l guess that was why l fell a lot. Burning on the back side of the thigh. Horrid pain in the groin area making walking difficult even with the walker. Sleeping in a recliner instead my bed because moving around in my sleep causes pain & then l am awake for hours.

I have never done well with meds. Thinking about trying a sleep aid after reading all your post... sleep is greatly needed at this point. Granni B

[Pippin58]

HiI'm currently on 40mg Amitripyline that I take early evening so I'm not a zombie the following morning.

During the daytime I try to distract myself by putting my feet on cold ice blocks and have a small ball to roll under my feet ( I even put these in the freezer so they are cold!)

In the winter I soak my feet in warm magnesium flakes & water...

Don't really know if it helps but it's a distraction for when I need to chill especially in the evenings.

I have throbbing pins and needles on the soles of my feet and numbness. No shooting pains so far...