I have been Dx with idiopathic small sensory nerve fiber neuropathy and nothing helps

stagger · 03-29-2010, 08:46 AM

Hello Hurtin Nerves,
I'm sorry your in such distress and I have little information to relate other than I take Methadone for the PN pain. Have tried most everything and over time they quit working or made the condition worst. My prostate causes me more pain now than the PN (catheterize 5 times in 24 hour period). Its bad enough hardly being able to walk, but not able to sit comfortably. Hang in there spring is close, hopefully this too will pass and welcome to this forum.

jannaw · 03-29-2010, 04:22 PM

Let me recommend that you google Allsup on the web and call them today, I was approved for SSDI in five months, everyone has to wait five months to be approved. This company did it for me, I'd already filed b/c they recommend that's the very first thing to do after you are no longer working.

As for your pain, you are not alone, we all have had to make hard changes to how we live our lifes now, and how we deal with pain. Good luck, you have come to the right place.

malawigirl08 · 03-29-2010, 07:05 PM

Quote:

Originally Posted by Hurtin' Nerves

Hello all..

I have been Dx with idopathic small sensory nerve fiber neuropathy and nothing helps. This all began in 2007 and is growing worse every month since.

My feet are burning on the soles, knife like stabbing pain at times, cold, semi-numb, burning on the tops, aching pain much of the time, hypersensitive to clothes. My legs are aching now, too, hypersenstive, tingling, just miserable.

This is also moving up into my face, tingling lips, hypersensitive skin, and into my arms and hands.

I have seen so many neurologists and pain specialists that I cannot even remember their names ! I need a SCORECARD to remember them ALL !!

OH, OH, get this! I have had EVERY kind of medical test there is...multiple MRIs of the neck, thoracic spine, lumbar spine, EMG/NCS, tilt table, QSART testing, every kind of blood test for every kind of weird medical condition, yet all come back NORMAL.

The MDs have given me all kinds of Rx, and NONE of it works !

Neurontin and Lyrica make me dizzy, gassy and ITCH like crazy, even a rash, though they help dampen the pain somewhat. Same deal with Keppra and Topamax.

Cymbalta makes me unable to sleep at night, and makes it hard to urinate, it somehow affects my kidneys.

Tramadol helps some but makes me dizzy and dopey, and itchy. NORCOS do the same, and the Duragesic Patch makes me break out into a terrible rash from foot to toes.

THEN I try the VITAMINS listed here.

I have taken Benfotiamine B1 103 mg with Menthylcobalamin 1000 mcg five to six times a day. Also Purified Fish Oil capsules 1000 mg 3 x a day, Inositol 500 mgs, CoQ Enzyme 10 200 mg, Acetyl-L- Carnitine 500 mg, Vitamin E 400 mg, Grape Seed Extract 100 mg plus a multiple vitamin in the morning and at night.

STILL no relief, and I have been taking all of this for MONTHS and MONTHS and MONTHS! So may say here that THESE vitamins will help, they do NOTHING for me at ALL !!

And get this....I was recently "laid off" my job at a busy law firm because the big shot partners said I was not "productive" enough. Well, how could I be with all this MIND SCREACHINIG PAIN ????

A male 57 yrs old like me, hard enough to find a new job in today's SICK economy who is WELL, not in excruciating pain like I AM EVERY DAY, even as I SIT HERE NOW !

My health insurance under COBRA will run dry in four months, I am too sick to work and Social Security Disability takes YRS to wait to receive (IF you are approved). I also hear that Social Security does not understand pain well, esp when you have pain that no objective medical tests can show you have an objective medical finding that can cause subjective pain.

ALL my TESTS are normal !

SO WHAT AM I GOING TO DO?

Modern medicine is USELESS, the vitamins are useless, the pain is becoming WORSE....quite frankly, I think my ONLY SOLUTION is to JUST END it ALL, and I MEAN IT !

And when I tell the MDs about all these vitamins I am taking, they tell me that I am throwing my $$$ away, nothing has been proven to regenerate
small nerve fibers and that I am foolish for thinking it has with these vitamins.

One neuro last week told me "LOOK, IF these vitamins WORKED, don't you think the MAYO CLINIC would be using them on their patients? WOULDN'T THEY WANT THEIR PATIENTS who suffer from your problem to get better, too?? WELL, the MAYO CLINIC does not tell their patients with your problem to take all these vitamins, so what you are doing lacks peer review, has no scientific truth to it and is PURE OUT AND OUT SENSELESS! Then he walked out of the examing room and his nurse told me "DR. DOES NOT WANT TO SEE YOU AGAIN ! "

Please, anyone, I am desperate! WHAT can I do to STOP or reduce this pain !
I even bought "THE REBUILDER" .. this device you place your feet into a water tub divided by a wall, then place these electrodes into the water, plug the unit into the wall, and it emits pulses that are supposed to make the
neuropathy HEAL.

Well, it works for about two hours after I am finished with it, then the pain becomes 5x WORSE than BEFORE I used "THE REBUILDER."

My health is SOO SOO SCREWED !

I cannot find any answers but one !

PLEASE HELP ME !

--Hurtin' Nerves

You mentioned the Rebuilder, have you turned this down to its lowest setting - this seems to be working for me - before I was setting at 3 and felt my nerves were literally frying - HERES TO THE NEUROPATHY CURE(whenit comes)

mrsD · 03-30-2010, 09:17 AM

To Hurtin:

I went back thru your history to your first posts here.

Your history shows that you developed this problem after needle work in your thoracic spine. Some of your early posts, here, were during my vacation so I did not see those.

However, given that your PN began after a trauma, you need to investigate medical negligence before the statute of limitations ends for it in your state. Be aware that doctors do not respond to patients with an open helpful mind who may have been injured by another doctor. This type of situation, often closes doors rather than opening them, to solutions. It is the medical curtain of silence!

At the time of your first postings, I suggested to you that you investigate RSD as a development with your pain issues. I also suggested that if you were using supplements back then with no effect, that you stop them (this was in summer before I left). Supplements are for people who are deficient, and have metabolic problems --- you have trauma as a trigger.

However, based on your earlier post, the burning around the mouth MAY be due to low Vit D status (which impacts calcium use in the body)...and tingling around the mouth, is one sign of that. It is also a classic sign of anxiety. Most doctors consider the anxiety first. So I would get a serum Vit D run and see if you are really low. Fixing that has been shown in studies to improve chronic pain levels.

Since you work in a law office, or did, you would have some access to advice about this matter, I would hope.

Secondwind · 04-02-2010, 05:49 PM

I was curious about the Lidoderm patches. I have been putting them on the bottoms of my feet, but you mentioned that they should be placed elsewhere. Could you tell me where that is?

Thanks so much,

Mary Jo

Quote:

Originally Posted by mrsD

Welcome to NeuroTalk.

Many of us deal with pain that is hard to identify and quantify daily.

There is no cure...you need to accept that.

However, every case is different. And something set you off on this path. You need to go back to the beginning, and study your life, diet, shoes, activity, vaccines, alcohol, overseas travel, use of paint and solvents for home projects, well water testing if you have it, any drugs you took for infection (fluoroquinolones), drugs for cholesterol (statins), or other long term medications,
sudden weight loss, poor intake of essential fatty acids, low magnesium intake, low Vit D level....and this is for starters.

You say you had every test? Did you have tests for gluten intolerance including blood work? Vit D level, heavy metals, anti mag neuropathy, Viral titres for Herpes family (simplex, zoster and HHV6) Charcot Marie Tooth inherited genetic neuropathy?

Have you been evaluated by a good podiatrist for mechanical issues with your feet? Compressed nerves, Tarsal tunnel, neuromas, spurs, arthritis, gout?

Dealing with PN is like a detective story. One has to evaluate what they eat daily, how they live, where they've been, and drugs they've taken. You have to be patient and methodical.
I sense alot of anger and frustration from your post so far. One has to really try and keep that at bay somehow. Work it off, so you can attend to your body and not make things worse by overstimulating your nerves with stress.

You can try some topical products, like Biofreeze for burning.
Lidoderm patches, to block the pain signals from getting to your spine and therefore to the brain. Placement of lidoderms is important, to catch the proper nerve. Putting them on the bottoms of the feet where you "feel" the pain, typically does not work. Some people here in the past and present also use,
IcyHot, or Super Blue stuff, and like the Biofreeze these have menthol in them and block burning sensations.

I suggest you read the stickied threads at the top of the page.
There are many links that are informative and interesting and something up there may click for you to use.

mrsD · 04-02-2010, 07:03 PM

Quote:

Originally Posted by Secondwind

I was curious about the Lidoderm patches. I have been putting them on the bottoms of my feet, but you mentioned that they should be placed elsewhere. Could you tell me where that is?

Thanks so much,

Mary Jo

I just returned home, and am exhausted. I'll answer this more completely tomorrow.

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