Wow I'm glad I found this place, it gives me great hope. So here's another Newbie's story (now that I've managed to put it together in a congruent way which I think makes sense).

Peripheral Neuropathies and I go way back (only recently have they become severe). My first experience in the 1970's had a doctor suggesting MS, but I decided to check out chiropractic treatment first and it worked wonderfully.

Over the years I finally learned that I had what was probably a pinched nerve which could be compressed by certain changes in my ergonomic environment (it took a long time to figure that one out, because unless I fixed the change, the chiropractic didn't stick). These neuropathies would be in my hands, face and eye! I've always assumed that they were the result of either the automobile or bicycle accident I had in my youth. Not a big deal.

Well now I have been dealing with a significant neuropathy in my feet and buttocks and I'm not diabetic. Hm. As I thought about it I finally recalled that this one hasn't been lifelong, but only since around 2004. In the winter my feet would become sensitive to showering. No matter the temperature, it could feel like EITHER ice picks or hot lead. I mentioned it once to my (then) MD, she dismissed it.

Only now do I think the time may be significant. Around the same time period I experienced a change in health, being diagnosed with a type of reflux (not GERD) that required high doses of Nexium to control. It was absolutely necessary. The symptoms were very socially disabling (extremely loud barking, throat clearing, copious, overflowing amounts of mucous) and so I began that regimen.

Anyway. I continued dealing with my yearly foot issue (which sometimes included bugs under the skin and burning), and also with the other neuropathy as it occurred. About two years ago Nexium was taken off my Insurance provider's formulary and I was forced to find another way. This was a good thing, and led to what is now a long-term remission. Still, I kept some around for emergencies and have used it on and off.

Well, last May the foot symptoms came on (not winter?) and STAYED! When chiropractic didn't help, I wracked my brains to figure out the ergonomic change I could fix. Hey, guess what, I replaced the toilet around then... not so easy to change as a chair! I've been trying different seats.

Since then I've tried multiple therapies to no avail. I just found the following site, and guess what? Nexium is on the list!

nervepainhelp.com

I had no choice at the time but to take it (knowing that it affects the stomach's ability to absorb Calcium, Magnesium and B-vitamins, I took supplements - my blood numbers remained "normal").

Well, right now I'm dealing with a chronic foot sensitivity (and a whole spectrum of unpleasant sensations - "pain" level ranging from 4 to 8 out of 10) - but here's the rub. When I SIT, it worsens a LOT. Like pressure on my buttocks/thighs are compressing something? I've been to a couple of Neurologists, bottom line: Small Fiber Peripheral Neuropathy and Pressure Parasthesia. It can come and go, it may yet go - here, let's start with Gabapentin. Turns out that stuff stones me totally, even at a low dose, and it isn't working (he said it should work within a couple of weeks).

So I now think I have two things going on, a possible drug related Peripheral Neuropathy with an ergonomic one (I recently worked very hard to take off 30 lbs - but now I feel like I'm sitting on my hip bones - I'm not thin, by a long shot, but I guess I lost a lot of fat from behind - and this tingles like crazy!).

The only odd thing is that walking makes it all feel better (not gone, just better) most of the time. Walking is my primary exercise, 1-3 miles a day (more on weekends). Driving, however, is a nightmare. With the pressure on my behind, my feet hurt so much it is difficult to control the pedals - and I must drive to get to work. This is very depressing. I also feel I cannot travel because of this so no vacation.

However, I'm very glad I found the sticky because it has given me great hope. Based on my history it would seem that this is healable, hopefully catching it about 15 months in (instead of YEARS) will be to my advantage.

Funny, this isn't the first forum I've become a member of with a "hopeless" condition. Like I said, total remission of that other condition. So I have no reason to not believe the same won't happen here.

Anyway, that's my story. I'm starting the supplement regimen and will attempt a second round of physical therapy (now that I know a lot more than I did a year ago). I can't say I'm happy to be here, but it is good to have a place to discuss this stuff.

Nate

Hi Nate, Welcome.

Have you tried sitting on one of those donuts used by hemorrhoid sufferers? There are both soft (inflatable) and hard (foam) versions. Might take pressure off the compression, but you may have to experiment with moving it around to find the right location.

Walking, swimming... anything that gets/keeps the blood moving and supplying oxygen to the periphery has got to be beneficial.

Doc

Oh, hiya! I've been bouncing around this forum learning what I can.

Uh, yup... been there, tried that. Not meaning to frustrate by that answer.

Actually, when things were STRICTLY ergonomic (the upper body neuropathy) - when I got my car in 2006, for instance, an expensive inflatable seat cushion helped to relieve it until my body adapted to the new car.

But I see where you are coming from, that "bony" pressure. So far I haven't found a solution (tried the donut) to that compression. One of the reasons I'm going to give physical therapy a 2nd try. Like I said, I have a lot more data since the first try a year ago.

I feel excited regarding the suggested supplements in lieu of my "model" - hey, if it won't hurt ya.... yada, yada, yada. I know I may come across as upbeat, but that's just me trying to maintain a sense of humor. This is very tough. A year ago I felt I was in the best health in my life, getting ready to do a 10 K, and now... THIS. Never did do it, and this has really got me down. But like I said... hopeful. I beat one "incurable," I gotta believe I can do it again and trying not to get too depressed!

Say howdy to Will Robinson, Dr. S!

Have you ever heard of a chi machine?

You put your ankles on the machine and it rotates your feet in a figure 8 motion, such as that of a fish. (if you use the CORRECT chi machine by sun ancon, its the original chinese machine, others not as good)

Anyway, do some research on it, as it could help with your symptoms.

I have had mine for years, never really used it, but when my neuropothy started I really felt something inside me say, hey find that machine and research it again and give it a try. So I did, and I think it helps my PN, among other things, especially circulation.

just an idea, I dont sell them or anything.

Hey, regarding this chi machine, I'm glad for you. I'm not clear on what it could do to help me. I just watched several videos and read some. I dunno 'bout it.

I've already been to a Neuropathy clinic that used something like that as part of the therapy (vibrators) with no improvement. In other words, a lot of wasted money. NICE people, very dedicated... using Low Level Laser Light Therapy (supposed to stimulate mitochondria), vibrators, chiropractic and traction. They claim a 90% success rate for PN improvement, 98% for major improvement. Guess I'm the 2%. I don't see how this device could help, but I will still ask about it as I go on this journey. Who knows?

I'm going to have to stop the supplements before I really get going - for a few days - time for adventures in mining.... because it is time for my colonoscopy and I can't find out if they affect blood, like if they act as blood thinners. Pharmacist said better to be safe. Well, it'll give me time to get all of them in place.

I really think I have a shot at getting a handle on this based on what I've read here - but for now it is awful. Today it was 8 out of 10. But the funny thing is I can walk! Sitting and standing, now THEY are problems, but walking, not so much. I don't see how the ability to walk fits into the small fiber PN model/paradigm, but I'm here to learn. Oh, it hurts, only less so!

Any other welcomes would be appreciated. I feel so alone in tackling this.

Well, it was just a suggestion, since I have had some small but good results with my chi. On the nights I remember to use it, the burning is less severe for me...or is it coincidence? who knows.

good luck

--compression issues might be involved, either primarily or secondarily.

Have you had some good imaging of your lower spine (lumbosacral area) done? Possibly in both recumbent and seated positions? I wonder if there is some positional pudendal and or sciatic nerve compression going on . . .

Yeah, I think compression issues are involved in exacerbating the SFPN.

When I gave the complete picture to the Physical Therapist (specializing in sciatica type stuff) he did seem a bit flummoxed. Here is my distillation/interpretation of what he recommends (and what we are going to try).

Leave us say that muscles in the area of the buttocks thighs and calves are extremely tight/tense (he whistled while measuring them). So we are going to start with stretches. I think the theory is that they are kind of tight like steel bands with the nerve(s) snuggled within their embrace (so I'm being poetic in my interpretation, LOL). Consequently, additional pressure from "outside" (sitting) is kind of like a chinese finger puzzle and compressing them. So...... hopefully stretches will alleviate this over time. Again, he didn't say it that way, it is how I've translated it.

Oddly so, I can take the "baseline" PN (about a 4 out of 10), but when you add the pressure parasthesia part to it, then it soars to an 8 or higher. Not that I'm going to neglect the baseline (that's what the supplements are for), but there's a lot going on to address.

That's the latest in this journey.

PS - I should be receiving a compounded prescription of a formulated foot gel designed to help with PN tonight. I'll post the results of using it. If it is positive, I'll see if I can get a precise listing of ingredients.

Well, hoping that the stretches will help with any pressure issues. I've ordered the following:

Acetyl l-carnitine (500 mg)
R-Lipoic Acid (100 mg caps)
Benfotiamine (250 mg caps)

Will start next week. I just gotta figure out the dosing and timing.

The foot cream came, but, again, waiting for next week after a medical procedure to begin anything new. When I get a chance, I'll list the ingredients, regardless.

You might also want to use CoQ10. I use the ones you ordered and many more.

Make sure the B12 is a good level, vit D also. Diet is at least half of it also.