Freakish Neuro Pain
 

I feel like a freak of nature........started with pin pricks all over body, head to toe, randomly (not all at once), approx. every 4 minutes, then progressed to every 30 sec. Have been tested for everything possible by neuro. Said it could be small fiber neuro, but did say usually this is confined to feet and hands, mine is everywhere (and I mean everywhere, head to toe). Also have abnormal, odd sensations; dripping water on limbs, vibrations in pelvis, electrical worm feelings, electrical current sensations. Taking Gabapentin, has helped mask over about 80% of these sensations.

Also started with an internal tremor in lower leg and chest and abdomen, mostly upon awakening (now I'm thinking Parkinsons). No test for Parkinsons!!!

Has anyone had Small fiber neuro all over body?
Has anyone had tremor with Small fiber neuro?

The other odd thing is....they stop when I am sleeping....
Any input would be appreciated!!

Small-fiber neuropathy--
 

--indeed, any neuropathy, does not necessarily follow a slow, progressive course that is length dependent, meaning it shows up in feet, legs and hands first (the nerves farthest from the metabolic center of the body). Especially in those with an acute/rapid onset, involvement of other parts of the body is not uncommon.

Generally, in those cases, one suspets a toxic or autoimmune (Guillain Barre or variant) genesis first.

I have had symptoms similar to this, light pin-pricks at various locations, usually arms and legs. Also occasional I was able to reverse this, make it happen much less frequent, through diet and exercise. I use the principles endorsed by Dr. Dean Ornish, Dr. Andrew Weil, Dr. Mark Hyman, and others. I don't want to speak for them so look them up, but here is my interpretation:

Eat mostly fruits, vegetables, and whole grains.
Avoid meats rich in saturated fat such as beef & pork.
Eat foods with low glycemic load, to keep blood sugar low.
Avoid refined carbohydrates such as products containing flour.
Eat good fats such as nuts, canola oil, olive oil, soybeans, salmon.
Avoid food additives.

What we eat actually affects our bodies. (Imagine that!) I also believe exercise is important. I have not yet established whether the diet or exercise is most helpful to me, or if they are perhaps about equal. I lift dumbells, do sit-ups, leg lifts, push-ups etc. for 45-60 minutes, 3 times a week. It helps me to watch a TV show I like.

Some foods I like to eat:
All-Bran and Raisin Bran cereals
soy milk (less sugar and sat. fat than cow's milk)
mix of edamame (from frozen), peas (from frozen), and whole grain noodles
grilled salmon
grilled vegetables (asparagus, bell peppers, onions, etc.) in foil
home-cooked pinto beans
walnuts, almonds, cashews
dark chocolate (70-80% cacao)
figs
prunes
bananas
low-fat, low sugar yogurt (tough to find)

I also take a multi-vitamin, B-50 complex, B12, evening primrose oil, and alpha-lipoic acid. I believe the latter two help with my neuropathy pain.

Electron

Sfn
 

I have small fiber neuropathy.
Same sansations as yours - for 5 years.
Sleeping Q resting help me alot.

two questions
 

Are you diabetic ? ..What are your b -12 levels?

Thanks for all the replies and info. No, not diabetic, b12 fine, no dx found after lots and lots of tests. My neuro told me he see patients about once a year like me (how reassuring!).

I have heard of non-length dependant SFN, but no Guillian-Barr or CIDP here either. No MS (had MRI & Spinal Tap).

Do you people also have an internal tremor?

Mine came 2 months after my abnormal sensations, the internal tremor is what makes me think Parkinsons (no test for that, doesn't show up in MRI's, etc., must wait for motor symptoms to be seen). I have read that 40% of Parkinsons patients start with sensory symptoms and internal tremor. I am really afraid it might be that.

That is why I am asking if you all have that tremor also, maybe I wouldn't be so worried about Parkinsons if I knew others had it included in P.N. dx.

Thanks again......I appreciate the support so much!

I don't know exactly what you mean by 'internal tremor,' maybe you could describe this more. Do you limbs actually move? I do sometimes have weak involuntary muscle twitches in various locations, but not strong enough to interfere with my life. This happened to me about 15 years ago along with some other symptoms and it seemed to be corrected with Prozac (fluoxetine) over the course of many months. This was long before the neuropathy was a problem. But I still have the twitches occasionally. I have no reason to believe it is Parkinsons. For one, I am only 41 years old.
Electron

I do get muscle twitches also (forgot to include that previously). This internal tremor, is an actual shaking/vibrating feeling in my right leg and abdomen and chest area, it is very intermittant, but quite alarming. The tremor is movement, but mine cannot be seen, only felt. Please do not let me alarm you re: Parkinsons, a tremor or gait problems would be a hallmark symptom. That is why I am concerned because of tremor. I am 52 years old. Just FYI.....Parkinsons is not considered old persons disease anymore, many people are dx'd in 40's and 50's, even younger......Michael J. Fox was dx'd at 29.

Have you had a flu or been on ....
 

antibiotics in the last 4+/- months? Some anti-b's can cause some neuropathy symptoms, and Start with the vitamin B's but try and keep B-6 out of the mix.... Too much b-6 can become a pn issue. Some is good? too much is NOT!
Next, do you know how your calcium and vit-d and magnesium levels are? Has a doc done a complete metabolic panel on you? I suggest you ask for copies of your recent blood tests and SEE! Calcium depletion, [along with D and Mag] Can and do cause the 'twitches' as to many 'neurontin' type meds.
Anti-seizure meds [which they were first developed for] are notorious calcium depleters!... Ergo, just drinking Milk isn't gonna cure it. Gotta go to the big pills and with the D and Mag! Why? To be able to absorb the calcium! Thank you Mrs D!
Rite now? You are going to have to read and learn the 'stickies' and a whole lotta stuff and fast? Why? So you can try and sort out what's internal [panic] versis real [actual].
I've been mentally thru what you are going thru now? BIG TIME, several times! Both I and all here will be here to help you thru? But first READ and then ASK questions from better knowledges.
Crossing my fingers for you and giving you :hug::hug:'s! - j