Originally Posted by beifeng

Hi Jelinx,

Immediately upon seeing your post I knew I had to make an account here; this is the first time I have seen anyone with the same symptoms I have been struggling with for about 2 months: namely full-body painful neuropathy characterized by "migrating" shocks/burns/pricks and itching.

A little bit of background in case you're interested:

I am 27 years old, and have always been health-conscious, if not all that healthy. Over the past few years, I have made strides to correct my diet (which during childhood was not terrible, but was overly laden with junk food for sure), but for maybe the past year before Covid-19 struck, I definitely fell into a rut of going out to eat/drink much too often with coworkers.

My first sign of anything wrong with me health-wise was a sudden bout of mild testicle pain around October 2019. It really wasn't that uncomfortable, so I didn't pay it much attention. In fact, it waxed and waned so much (with the waxing being only a mild discomfort) that I let it go for months. Around February 2020, however, the pain had actually become strong enough to start making me concerned. It was also accompanied by a feeling of something being "off" in my lower abdomen, and I started to notice I would feel even worse right after eating (something I should have paid more attention to at the time). Meanwhile, I started having random migrating joint pain as well. I went to my doctor, and we ran an ultrasound and CAT scan on the area, finding nothing. The pain did not subside, and by March my schedule had become: wake up in pain, struggle through work, go home and lie in bed immediately.

A curious thing happened once I started working from home in mid-March, though. Within a couple of weeks, all these symptoms had completely disappeared, and I was totally normal. Again, I should have given this all a little more thought, but looking back, I believe the timing aligns with an extreme change in diet and alcohol intake. Thanks to quarantine, I was right back to my old healthy habits of eating whole foods and maybe having a drink or two on one night of the week.

As restrictions began to ease up, though, this of course changed. I started ordering in more often, and my drinking became quite a bit more frequent (and much heavier when I did drink). The testicle pain had started to come back by early May, and by mid-May, the joint pain had come right back with it, and much stronger than before. I had days where I couldn't do a push-up because my elbows and shoulders hurt so bad.

And then the foot pain at night started. Not every night, but it was strong enough to wake me up when it did occur. It did not feel like nerve pain at first - it just felt like the joint of my left middle toe was hurting. This would flare up sometimes in the middle of the day, but it was particularly painful at night. I started having very restless sleep (unrelated to the pain, I believe) which continues to this day. For days at a time, my lower back would hurt so bad that I couldn't sit at a desk for more than a couple hours, and my hands felt like I had carpal tunnel.

Once it started to get this bad, I made an appointment with my PCP to run some blood tests. I thought it was diabetes or arthritis. Everything we ran came back negative, though. Around this time, I had started to notice that I had also been constipated for a month (again, something I should have put more thought into). By the end of June, I had been having such an odd feeling of general malaise every day, coupled with the random pains all over, that I found myself drinking more (a couple nights a week) just to deal with it. One night, I found myself going to bed after a few drinks with burning wrists/hands and feet. Then I woke up, and nothing has been the same since.

I awoke with lingering nerve pain in my hands and feet, and arms and legs that were painful when rubbed (allodynia?), especially by fabric. Concerned, but unable to really articulate what was wrong with me, I went to the emergency room and was of course immediately dismissed. After this I could not sleep at all for about 2 days, and by day 1 I had the sensation that I was burning both inside and out, that nothing I touched felt right, and that I was being shocked, pricked, and burned seemingly at random. When I would try to fall asleep, my body would violently jerk itself awake. Eventually, my body shut down on me and I was able to sleep for 14 hours. When I woke up, my symptoms were greatly reduced, but obviously still there, and they have continued to this day, with all manner of manifestations and intensities. I have had days where I have barely felt anything, and days where I am constantly assaulted by pain.

I barely sleep at night: I can usually sleep for 3 hours straight and then my body constantly wakes itself up. I used to be able to sleep for 12 hours if I really wanted to. I have had digestion problems, strong heartbeat, and shortness of breath, which I feel also suggests some kind of autonomic neuropathy at play here. I, like you, strongly feared MS, but my neurologist does not suspect it. Now I almost wish I were diagnosed with it.

After a few days of all this pain, I noticed that I was also experiencing a very sharp stomach/intestinal pain pretty much constantly. I cut out gluten, and this seemed to resolve (though I still get cramps). Removing gluten also seemed to get rid of the strong jerking episodes I would have when falling asleep, and significantly decreased the intensity of my foot/hand pain at night. The intense back pain is gone, and my "arthritic" hands are no more, along with the more persistent joint pains (though I still get some traveling pains from time to time). Unfortunately, nothing seems to have touched the traveling neuropathic pain/allodynia, or what I feel is the autonomic dysfunction (though bowel movements have improved quite a bit).

However, I strongly believe this all started in the stomach for me. I do not believe all of these health issues are somehow unrelated, and I know there is a cause. I am not confident the doctors will find it for me, but I have been operating under the assumption that I have thrown my body into some kind of crisis via a combination of generally unhealthy eating habits, probable sensitivity to gluten (and maybe something else), and possibly a vitamin deficiency caused by the former two issues. I am continuing to fine-tune my diet to figure this out, and started a couple weeks ago with mega-dosing certain vitamins to see if I have any reaction.

Of particular interest to me is the research on Thiamine by Derrick Lonsdale, and Frederich Klenner's use of the vitamin (supported by many other vitamins) to cure Multiple Sclerosis. You and I may or may not have MS, but I am hoping there is some overlap in the mechanisms between MS and our particular kind of ideopathic nerve pain that would cause a similar treatment to be effective. I began megadosing thiamine about 3 weeks ago, which was immediately followed by a horrible increase in pain and insomnia. This might indicate, as Lonsdale calls it, a common "paradox reaction" that can last for a month or more, after which symptoms will almost certainly improve. Unfortunately, I can't report any improvement 3 weeks in, but I am continuing the protocol as these are still early days. Of course, I can't be sure symptoms didn't just get worse on their own for no reason either.

I know how difficult this is for you. My work productivity has suffered. I have missed many important life events already (including one of my best friends' weddings just today). I have been in an amazing long-distance relationship with my girlfriend (in Japan) for five years. 2020 was supposed to be the year we finally moved in together. She has been extremely supportive, but between Covid-19 and this neuropathy issue, I feel like my whole life is slipping away from me. There hasn't been a day thus far that I haven't cried in fear that we won't be able to live the life we have dreamed of together for so long.

Please know that you are not alone. I am so sorry this is happening to you, but I am just so glad there is someone who understands what it feels like to live this way. Every day and every night is hell, and there is no respite. I can't say that I haven't wished for death on some of the especially bad days. But I am going to keep fighting, because there is a reason we have gotten to this point, and there must be a way to fix it. Don't give up.

-B