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. 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