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

Hang on HANG on! I certainly hear your plea for help! I saw that there were no responses to your thread (yet!) but I just wanted to stop by and say WHOA.....!
Big deep breath.....

Take a BIG deep breath! You've found a wonderful place.
Actually, I had to take a double-take, because I thought I was reading a post I myself had written!! There are so many similarities in what you are saying.

I just want you to know that there are so many VERRRY knowledgable folks here who can help talk you through this.
You are making a plea for help.....good call. But PLEASE try not to let everything overpower you like an avalanche!
.....and when I read someone saying something like ..."you're ready to end it all....!!" no no no
Dawwnnt Duit.

This forum is PACKED full of people who will give you the support and direction you are so desperately seeking. Just hang in there ok!

It's a process of elimination.....
You are NOT alone in this!
5 months ago your post could have been something I wrote!
Since then, things have turned around (slowly it seems), but at least I feel as though I've got control of this 'condition'....it doesn't have control over ME!

You'll get responses to your thread. Take everything to heart. Read the important 'crash course' information that is at the top of the page listed in the 'stickies' ..... Many knowledged wonderful people have spent countless hours putting together all this information to help people like you and me realise that we CAN gain control of this.....

I saw your post and I couldn't log off for the night until I did my best to send you some HOPE....!

Help is on the way..........
These folks are a fantastic TEAM of inspiration and logic.....
Listen to what they have to say....because they (we) have ALL been at the point you are at right now....


Rae

This is one of the most informative, concise sites I've been shown.......I'm sure you've done homework...but at least this'll give you something to weed thru.....if you are completely against the supplemental programs.....(per your wonderful neuro )


http://www.ninds.nih.gov/disorders/p....htm#115873208

...and...are you at all familiar with the "Liza Jane" spread sheets? They are somewhere up yonder in them thar stickies I do believe......someone can help explain those to you....
as for me, I'm dog tired, so, gonna crash.....

Caring
Rae

We are all with you. I know what you are talking about.
Remember - there are some days that are better then the others.
You have to rest much more. Do what you like to do and eat properly - mainly vegtables and fruits.

And keep posting - it helps to vent!!!!

(I'm almost 5 years in this story....)

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.

Welcome Hurtin'

I know how alone you feel right now. I have been there. And, until I joined NeuroTalk, thought I was the only one who had gone through so much frustration. I learned differently. When I read some of the stories here, I realize how fortunate I actually am.

MrsD gives good advice. Listen to her. Read the sticky she suggested. There is a lot of valuable information there.

You can apply for SSDI, and you will probably be approved. I was 53 when I applied, and even though it took 9 months for the Initial Decision. I was approved, and didn't have to go through any lengthy appeal process. Your age will work in your favor. Over 50, and over 55 are 2 cut-off points SSA uses for determining ability to do other work.

You can find the detail of my SSDI process (including how and what I submitted with my application) by clicking the link in my signature line. That will take you to the story of my 6 years with PN/SFN. But, if you look at the top of the page, there is a tab for 'SSDI fillable forms'. From there you can link to my SSDI application process and experience.

Also at the top of the page is a tab for 'Resources'. There I've linked most all of the documents I have downloaded over time regarding PN/SFN. Near the middle of the page is a section for Chronic Pain. Listed there you will find the 'Target Chronic Pain Notebook'. You might find it useful for tracking some of the items mrsD suggested.

Keep coming back. You will find no better place for support.

You do need to go for SSDI. If the process seems too daunting, I recommend going with a SSDI lawyer. After my first denial, this is what I did and it made my life a lot less stressful. They are capped at what they can charge you.

.....And it's not even 8am CST !! WhaddItellya! TEAM!!

Put your issues in a single file line! Don't look at the whole spectrum as a whole!
You've already got great advice at how to start dealing with your employment issues, per plgerrard.
MrsD said it all! Backtrack your life......

My main culprits ended up being due to several of the things she listed, I overdid workouts on a treadmill wearing NOT good shoes (that's when MY pain set in bigtime) plus, I used very heavy duty weedkilling compounds (not sold in stores, I had to get special permission from county aggriculture to use) on my pasture....I thought I was taking all the precautions with using it, but....? I always tended to use "double strength" in what the bottle recommended. (stupid)
I've consumed WAYYY too many carbs in my life.....was headed for diabetic issues.....

plus my THYROID was all out of whack....have you had a complete thyroid workup to see where you T-levels are at?
This affected most of my hormones, plus for pain I was taking opioids, which FURTHER delete hormones.......
My vital B Vitamin Levels were low AND D... AND magnesium...

.....and I have a 'problem' with your Neuro going off on you regarding the supplements....! Our bodies REQUIRE these supplements!! That's simple common sense.....

It takes aLOT of time! You have to make LIFETIME changes.
You can't take supplements for 6 months and expect things to completely turn around.

When you say you've had 'every' test in the book done, I challenge you to USE those LizaJane diagnostic worksheets to literally prove that to yourself. Those are the best 'cheat sheets' I've seen to really target what has or has not been tested.
Feel free to vent all you want....that's what this is for.....
But be willing to fight the fight as well my friend!

My prayers are with you.....
......PS....praying helps! (if you're inclined) Have you reached out in that way as well?!

So.....HAVE you REALLY done 'everything' ?
Don't answer that, just sum it over in your head and see that there is more support here than anyone can ask for.

When someone says something along the lines of wanting to just 'end it all' thinking they've literally tried everything.....
That's when a bit of 'tough love' comes in.....
Why do i know this? Because I've BEEN there. I DID want to end it all.

God Bless
Rae

Rrae, I'm glad you brought this up. I intended to make a similar comment in my last post, but you know...that memory thing .

In fact, when I was diagnosed with SFN, my neuro gave me a list of supplements I should be taking. I previously posted them in this thread:

http://neurotalk.psychcentral.com/sh...093#post630093

There are many more I have learned of since. B6 and D just to name 2. I have deficiencies in both, but am already feeling better with the supplements.

And, Hurtin', please don't let yourself get overwhelmed from all you have read here. There is a lot of ground to cover. Just take baby steps. Start reading the info suggested, but don't try to absorb it all at once. You can't. And no one here expects you to. Just make notes/lists of those items you find important. And, as you read, if you hit a stumbling block, don't hesitate to ask questions. Someone here is sure to have the answer.

Hello,
Are you taking R-Lipoic acid or alpha-lipoic acid. This seems to be helpful to a lot of people. I started taking a number of supplements (based on the much appreciated advice of neurotalk memebers, especially, Mrs. D!) at the the same time, about 6 months ago, so it's difficult to tease out what might be contributing to the bit of improvement that I'm currently experiencing. I could start eliminating my supplements one at time to assess its impact, but right now I don't want to "mess with success". I've been taking R-lipoic 100 mg daily. My neurologist indicated that, in addition to Mentax, alpha-lipoc acid was the only supplement worth taking (he's not familiar with R-lipoic acid, so what does that tell you). I've also come to realize that keeping as active as possible is good for the "body and soul"...I have found yoga and walking to be wonderfully beneficial for me. Massage therapy, brings much, albeit temporary, relief. Try to stay positive...stress only seems to excacerbate symptoms. Take care.