djt1

Hi Jeffrey

I'm in much the same situation, tingling and burning in feet and toes all the time with twitching calf muscles and occasional sharp pains. I also get it a bit in my hands. Like you I've had all the blood tests and an MRI and a CT scan. My neurologist has suggested a PET scan as well, and I am waiting for that, otherwise everything is coming back normal. I don't take any meds, but do take vitamins and supplements - Alpha Lipoic Acid, B12, Magnesium, Evening Primrose oil and Fish oil. I don't know if they help but things haven't got any worse over the last 2 1/2 years. Like you, mine started suddenly; my hands and feet felt like they were exploding one night. I do find being active helps, and am doing a yoga class and try to practice a bit at home.

Wishing you all the best, Deborah

joetexas

I have had small fiber neuropathy for about 2 years (idiopathic, no clear reason such as diabetes). It can really disrupt your life. My neurologist prescribed Low Dose Naltrexone (LDN) which you can read a lot about online. It has to be compounded. It is thought to help with a lot of things, but especially problems with an autoimmune aspect. It has reduced my symptoms by about half. (Unless it is placebo, which would be okay, too.) The doctor says LDN may have a lot of good health effects. It is an anti-inflammatory. Most things prescribed for neuropathy are just meant to relieve pain (gabapentin, amytrityline, duloxetine, etc.) My neurologist thinks LDN is more addressing the underlying problem.

Another tip, I found a great product on Amazon which helps me cope with the pain and weird feelings in my feet and lower calves. It is called "Polar Ice Foot and Ankle Wraps." You keep them in the freezer until you need them, then you can wrap them around your feet and ankles in all kinds of ways. You can do all kinds of things with them with their velcro straps. They are certainly not to treat anything, but provide a lot of relief. When I have those on, I feel hardly any symptoms at all. If you like them, you may want to get 2 or 3, so you will have one for both feet and one or two more in the freezer for when those warm up or thaw out.

djt1 in reply to joetexas

Thanks for the tips - I use a cooling gel pad and have wondered if those wrap around ones would help. Also am looking up LDN - are you in the states or uk or elsewhere (just because I see that LDN is more known in the states)?

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joetexas in reply to djt1

I'm in Texas. As I said, I don't know whether the LDN has made me feel better, or if it could be placebo. Maybe I've just learned not to think about the neuropathy as much. There are no side effects with LDN, unlike Gabapentin. I cannot take that, makes me feel terrible. Duloxetine gives me severe insomnia, as do all SSRI's. You might give LDN a try. My neurologist is pretty savvy.

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1pauly in reply to joetexas

Hi joe, thanks for the information. Would you feel comfortable sharing the name of your neuro. I have have small fiber neuropathy and was interested in looking into LDN. I am in the Houston area. No worries if not. Thanks..

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joetexas in reply to 1pauly

No problem. Her name is Rebecca Verellen. She is a very likeable young woman who offices out of an old house near downtown Austin. I quit taking the LDN after a couple of years. Lately, I'm thinking I shouldn't have. The problem never went completely away, but just didn't bother me that much anymore. Lately, it has been flaring up some. I notice a strong correlation with stress and my neuropathy. I never knew if the LDN really helped, or if it was placebo, but my symptoms definitely got better after I started using it. As I recall, it did not help immediately, but seemed to help more as it built up in my system.

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1pauly in reply to joetexas

Wow, thanks joe!!

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Cactusa

Hi Jeffrey, I also have polyneuropathy affecting my sensoral and motor nerves causing paint, numbness, twitching etc. have you ever tried CBD oil for treating the pain?

ajd69

Hi Jeffrey, I am 49 and have had these symptoms for the past 5/6 years, mine too is idiopathic or ideopathetic as I call it. As far as I know I have various neuropathies with small fiber being one of them (also have cfs/fibromyalgia). I'm on Nortriptyline(was amytriptyline but made me too groggy) and like the others have been on Gabapentin and Duloxetine and Naproxen which did nothing for me, the Nortriptyline takes the edge off but doesnt kill the pain (nothing really does to be honest), have had tens machine which didnt work for me (how zapping yourself with an electric current helps nerve pain I dont know lol), I have lidocaine patches which do help a little with localised pain in my thigh muscles. I find having a warm bed helps me settle at night my electric blanket is my best friend. Again like others have mentioned check your b12 , magnesium and folic acid levels as mine tend to run low and aggrevate the symptoms. Ask for a referral to a pain clinic if they have one where you are sometimes they can be helpful ( or in my case basically think I'm a fat lazy bitch) without actually saying that. Hope you find relief soon.

Valerie58

Similar situation. I have found doing resistance training at the gymn has helped a lot. Plus on hbac1 tests I was showing as just prediabetic. This should not cause these problems. However I watched a video from the USA which suggested it could. I no longer eat bread, potatoes, rice or pasta. I do eat pulses and a lot of vegetables with meat and fish.I also eat dairy. Keeping my sugar levels stable and losing weight has improved things considerably. Also reducing stress levels has helped. I dont normally take anything but on 2 occasions I have had to take a course of Gabapentin. The first worked the second didnt.

My objective is currently to keep my weight and everything else at NHS guideline level so that it doesnt let them off the hook figuring out the problem. I am 5 years in with no known cause. I think they dont know much about these issues in reality and are not willing to test for things that are not treatable.

CCDork

Hi Jeffrey, if you still haven’t ascertained the cause, have you been tested for ceoliac disease? It might be worth a try, it’s a simple blood test called the tissue transglutaminase test. About 10% of ceoliacs have neurological symptoms and these can include peripheral neuropathy.

Soly56

Hi Jeffery,

I hope you have found some resolution to your symptoms. I have has exactly the same events as yourself, I wander if you have come closer to identifying the cause in you case ?

sol