I write this story in case this can help anyone else suffering from peripheral neuropathy.
PN can have many vastly different causes, mine appeared first around six months after the onset of ME/CFS, and 12 months after what in hindsight was a lyme bite with typical bullseye rash.
Another possible contributing factor was a borderline carbon monoxide poisoning I managed to give myself when living for a month with a coal stove in the bedroom (lesson learned: don’t try to be really warm and comfy when sleeping in the same room with a coal stove, or, if you do, keep the window cracked open). I don’t have any diagnosis of that, but after one night when I was really trying to stay warm I woke up with lack of breath, threw up and was quite ill for a few days. The unbearable neuropathic pains began some days afterwards – maybe by accident or maybe not – and after that they never stopped and only got worse.
This first round of peripheral neuropathy had very specific symptoms. It only appeared after exertion, and walking triggered it more than other activities. It would go away with rest, and the amount of rest required was always related to the amount of exertion before the symptoms. The pain and at the same time loss of sensation began from the tip of hands and feet, and according to the amount of effort, it would go up like a sock and a glove, sometimes reaching up to the knees and elbows.
The post exertional symptoms were consistent with the classic symptoms of ME/CFS and for those years I never looked for a different diagnosis, but years later I read of similar symptoms in various groups devoted to peripheral neuropathy. The pain was very distinctive too: it was the same pain I experienced when someone would draw blood for a blood test, or if I kept a limb still for too long and it would get painful pins and needles. The pain intensified with exertion, sometimes even a tiny movement, and once it started I had to be perfectly still otherwise my body wouldn’t recover. No doctor expressed any interest in these disabling symptoms, but I am still very curious to know the mechanics of this pain.
When my ME/CFS symptoms improved, the PN symptoms were much reduced and only appeared after walking 3+ miles, it’s like my body was on a leash and it wouldn’t go beyond a certain distance (still can’t).
Only after several years I learned about having Lyme and reactivated Epstein Barr Virus. During or after lyme treatment I didn’t see any vast improvement regarding that symptom, but later on I directly addressed Epstein Barr, and that was miraculous. After around 3 months of treatment those symptoms basically disappeared. My daily distance “allowance” increased, to reach that peak or 3+ miles, and it was enough to have a normal life without any pain.
That is the timeline for what I call Peripheral Neuropathy Number 1, but at some point new symptoms that were actually diagnosed as PN appeared.
Peripheral Neuropathy Number 2 appeared some months after I moved into the moldy place I write about in other parts of this blog, together with a large number of symptoms. It is possible that it started after the mold colonisation in my colon took place, but that’s anyone’s guess. I was experiencing extreme reactions to that apartment, and that’s where my “mold story” started. (You can read about the mold story here).
These symptoms were quite different and prompted me to seek immediate medical attention. The pain was rather like electric shocks or stabbing, also in arms and legs, but extremely intense and unbearable. Thankfully in the beginning they didn’t last long, and they didn’t seem to be related to exertion like PN Number 1.
I waited for months to see the top neurologist of the region – he suggested that I could have Peripheral Neuropathy (as usual, “idiopathic”, without any known cause) and he ordered basic blood tests and an Electromyography, muscle testing
What he didn’t count on was that the EMG – either by a mistake of who performed it either because of some weird reaction of my mold-affected nerves to the electricity – left me in atrocious pain and completely unable to move hands and feet for a good 4 months. Of course this reaction was “impossible”, and it made that neurologist and the following one very angry at me (yes, they were mad because I was in pain in consequence of an insanely painful medical test), after that I didn’t feel I could get any further medical attention from conventional doctors.
Thankfully a functional doctor had the idea of testing, among other things, the levels of zinc, Vitamin B6 and B12, after I tested positive for Kryptopyrroluria, a nice little test with great potential, which I discuss here LINK.
It turned out I had close to zero zinc, and ridiculously low B6, a common cause of neuropathic pain. In my case the cause was the parasitic infestation you can read about here LINK.
Before that discovery though I had to take the edge off the mind-numbing, suicide-inducing pain I experienced after the EMG.
The first remedies I came across were:
Helichrysum essential oil – very expensive, but a few drops in carrier oil on arms and legs did more or less the same effect as Gabapentin. The effect lasted only a few hours.
Frankincense essential oil – in several articles (for example this one) it was suggested to use this oil for nerve pain, I found it works wonders for other kinds of pain like muscle pain or cervical pain but it didn’t work on my peripheral pain.
Sour Cherries (or sour cherries juice) – while searching on Google Scholar, I came across various articles touting this humble fruit as a painkiller for neuropathic pain. I couldn’t find any juice, but luckily I was living in a country were sour cherries were commonly found in the frozen food section. I had to eat a LOT of sour cherries, like a pound or more per day, which gave me some abdominal discomfort, but the pain definitely reduced.
Some articles about this surprisingly effective fruit:
sour cherries for neuropathic pain
anti inflammatory effects of sour cherries
LINK
I didn’t think of trying CBD oil for the pain at the time, probably it would have helped but I don’t know.
Finally what made me overcome that difficult moment was a protocol of nutrients found on this facebook group, going by the name of Bob Diamond’s protocol (there is also a website now).
The protocol consists in tons of antioxidants plus various fatty acids to nourish the nerves. One important item in the protocol is hemp oil that brings precious Omega 3 and 6 and fatty acids. I personally added 3 avocados to my meals every single day for more than two years, when I didn’t eat them I felt more pain.
I believe another thing that helped was eating according to the Wahls Protocol. As I explained elsewhere LINK the Wahls Protocol has been conceived to facilitate nerve regeneration in Multiple Sclerosis. My rationale was that Peripheral Neuropathy came with demyelination of the nerve’s outer sheat, which is similar to what happens in the brain with MS, so if the diet makes one demyelination heal, that should work for other kinds too. The protocol is a diet similar to Paleo, with a focus on healthy fats and lots of organ meat, full of B6 vitamin. I followed the diet strictly for around 2 years, plus one year of Auto Immune Protocol (AIP), which didn’t seem to make any significant improvement compared to the Wahls protocol, but I tried just in case.
After that, the pain levels reduced but the symptoms would still come and go, for no apparent reason. Treating parasites (see the whole story here LINK) and finally treating systemic mold in my intestines (see the mold story LINK) helped quite a bit, but only after moving out of my cross-contaminated apartment and after starting my journey of mold avoidance LINK the symptoms disappeared, to came back ONLY during or after mold exposure, and sometimes exposure to chemicals. Against that pain sadly at the moment my only weapon is avoidance, but I have the impression that when all the infections are under control reaction symptoms are less, so my hope is that one day I will be able to get rid of them entirely.
This is all I can share about my peripheral neuropathy experience, I hope you find some of this information useful.
