OMG! Whole body sensory neuropathy and seemingly overnight.
 

Hi all,

This is my first post. I am 56. I have led a very healthy life. My family is healthy overall. I don't smoke. I drink maybe more than average, but no way daily. I am not diabetic. I am 5'9" and down to 176 lb. Just under 5 months ago I suddenly experienced burning in my calves and shins. Later I put 2 and 2 together and recalled that about 2 weeks prior to the burning, I have had 2 or 3 days of an odd buzzing in my scrotal area. I thought maybe a muscle twitch, but it was weirder than that. I am something of an alarmist, so I went to GOOGLE almost immediately when the burning started and concluded I may have first signs of MS. Yes, I was overreacting. It took me a month before I finally got in to see my PCP. He said 'neuropathy' and referred me to a general neurologist. I was floored. Neuropathy? Me? Why? I became a nurse mid career and to me neuropathy was something diabetics got, or maybe people with nerve impingements. Long story short, the blood tests from my PCP and the neurologist have shown nothing. The neurologist is not a specialist in this area but suggested small fiber neuropathy based upon my presentation. I was glad it wasn't MS (it was symmetric he explained), but then I got to reading about SFN and started freaking out all over again.

He started me on nortriptyline (only a token dose of 10 mg per day) and offered nerve conduction tests. I have a high deductible plan, so I have refused so far. I also realize that nerve conduction is not likely to show anything much in SFN.

I am experiencing no motor changes that I can detect.

The literature (I like literature having always appreciated science and then becoming an RN) talks about idiopathic sensory neuropathies showing up in people's 6th decade.

But I am WHOLE BODY. The literature seems to suggest this is a rare sub-variant.

I get buzzing, itching, burning, some very mild transient numbness , localized small achy spots, transient cramps in my lower abdomen (both sides). And these occur in legs, thighs, backs of hands, backs of arms, flanks, scalp, lips (numbness).

When I put 2 and 2 together again, I realized that it may have all started around 10 months before, the prior summer, with burning in the backs (not the bottoms) of both of my heels. I thought it was a fasciitis, or a tendonitis and never even mentioned it to a doctor.

So here I am. Something that came as pins and needles or burning in the backs of my heels blew up into a whole body neuropathy seemingly overnight around 10 months in.

I am deeply deeply depressed and scared. I can't live. I think about it all the time. My sex life with my wife has stopped. I am letting this ruin my life.

I'll say again, the literature seems to call whole body (or PROXIMAL in addition to DISTAL) rare; more rare than the 2 in 100 that they say all general practitioners see in their day to day practices.

Not sure what anyone can say, but it feels good to write this all down.

Welcome jelinx. :Wave-Hello: Hope you find an answer.

Kitt

Welcome! Seems your story it similar to mine. Hope we both get to the recovery stage in the end! Today is one of the 'better' days for me, so that's a plus I guess!

Would maybe get reading on the supplementation stuff to see if that may be an avenue to pursue.

Welcome as well. Glad you're having a better day. Let's maximize living in our better days!

A lot of good info on the PN group, and I have and still do have my share of neuropathy and it's from hip replacement surgery 10 yrs ago..... I use many of the B vitamins and Inosine helps my issues a lot and I've talked about it a lot here.

It probably wouldn 't harm to get on Grape Seed Extract for overall circulatory issues of the body. I've been taking it 25 yrs. and I believe things could be so worse for this 82 yr young woman.

thx Caroline2...i have read your other posts with interest. my biggest fear is not that i won't be cured, but rather that it will continue to progress. so far, i have started B12.

Welcome Jelinx,

I am also a 56 yr old male with onset of PN this year. I have experienced similar symptoms. Due to Covid 19 I am yet to see a neurologist but am pretty certain I have alcohol induced PN. I gave up alcohol at the beginning of February but my symptoms continued to get worse until the start of April. Sex then was unbearable and unwanted. I was glad to self isolate ( we are pretty new to each other and live in separate houses) Everything hurt all the time and I was not capable of working. I was depressed and spent a lot of time sleeping. I wondered if things would continue to deteriorate. I feared MS and worse. I hear your despair.

Lockdown was a blessing in disguise for me. It allowed me space and time to formulate and implement a plan. I resolved to make myself better. I resolved to exercise everyday and have really worked on my flexibility. I have taken the recommended supplements, but then realised that supplementation was not enough. So I have adopted a whole food plant based diet. Supplementation is not enough because there are many beneficial compounds that remain undiscovered in the foods that we eat. Kale and Broccoli are to me what Grape Seed Extract is to Caroline2.

My recovery was astonishing. I felt and looked a lot better and I was left really with my earliest symptoms numbness in my toes. In comparison trivial symptoms. ( And Jelinx, sex was great again! At least for me)

However 5-ish weeks ago I had an "experimental" few beers and my symptoms are back, nowhere near what they were and it does not affect my work but again they are getting worse this week compared to 5 weeks ago. I hope this is the peak.

I am interested Jelinx, you report numb lips. When does this happen? And specifically where do you get scalp pains and what kind of pain, lingering ache or sharp pains for example?

Atty

Atty,

Good luck with plant based diet. Hopefully it will contribute to antioxidation. Some studies are suggesting that oxidative stress is a major component to neuropathy.

I would describe the scalp pain as itching and burning. It's something like having a sunburn on my head. It does not happen all the time. That is what is so weird about this affliction. It jumps around the body. I do not know what brings on the vague numbness in my lips. I can't identify any triggers. Some days I don't have that at all. I didn't feel numbness in my lips today at all. I will say that stress and lack of sleep seems to contribute to an increase in symptoms.

It's out of our control what our nerves do in our bodies. I will occasionally get some tingling in my face but thank goodness not often...

I don't know if you found the useful sticky threads above, those are full of info..

Don't discount alternative care. :)
Maybe Naturopathy or Acupuncture?
Also nutrition/clean healthy diet, supplements

You mention the emotional toll the worry/anxiety is having on you.
The emotional aspects of any condition can be overwhelming, the waiting for awnswers and the what if's..
But there are ways to calm that hyper concern down while this gets figured out a bit..

Don't let worry affect your relationships & life, enjoy life as much as you can always...

Psychological Quizzes and Tests
Psych Central - Trusted mental health, depression, bipolar, ADHD & psychology

Look up the stages of grief, if fits for health conditions also.
Stages of Grief: General Patterns for Breakups, Divorce, Loss, More

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

Hi did you ever figure out what caused your whole body numbness?

Have you been bombed bt B6?
 

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Are you taking any supplements, energetic y drinks, or products that contain B6 (Pyridoxine)

I'm going through the same EXACT experience ... and it's been devastating.

Im NOT anti vax, but I was (stupidly) taking about 500% of US RDA B6 at the time of my second shot of Pfizer.

I have a hunch that either the vax or COVID itself may somehow interact with those of us taking too much B6.

It's only a hypothesis at the moment, and I'm undergoing all kinds of tests ... But it seems B6 and the mRNA may not mix well.

Not only is it perhaps doing something to the peripheral nerves, but also Gabergic system, and more.

Mine has progressed now to adrenal insufficiency, thyroiditis, idiopathic UE and LE peripheral neuropathy. Top it off with a low WBC on CBP.

I've already had an EMG and NCS which were a mess ... Some nerves with no response at all.

I just wonder if you might fit my hunch *if* you are taking supplements with a lot of B6?

As you re probably aware ( I was not) - but pyridoxine can cause every symptom you have ... and I have EACH exact one you do .. am just as scared ... and it's reignited what little I can recall from my pre med days ... Which is very little lol.

I would absolutely not have handled anywhere near as much of this condition without all the natural remedies. Liposomal Glutathione, etc. All can found on researching natural handling

? for sandyocean
 

Just curious about the Glutathione, sandyocean, are you using the transdermal spray or a cream, or do you take yours orally? I reread your original posts and understand that you were affected by toxic levels of certain chemicals. Do you think that this Glutathione helped your body remove those chemicals?

. Just liquid in a spray bottle. I take 7 squirts per day. At present using Designs For Health brand.

It seems I too have what you and Jelnix describe. I wonder if you found any solutions? I had covid 19 in December, during which I had pins and needles in my fingers and toes. 4 weeks after the cough finally finished, I started waking up with horrible pain.

Did anyone find a solution or recover on their own?