Hello Everyone,
I'm new to this forum and am in desperate need of help in dealing with this neuropathy. I'm 25 years old and first started experiencing tingling in both hands in February 2009. After numerous MRI's and an EMG, the neurologist diagnosed me with Small Fiber Neuropathy. By then I was experiencing burning pain in my upper and lower extremities, and at times, heaviness in my legs. I have had all kinds of blood work done and the cause has yet to be found (although I have kind of given up). I'm in pain 24/7, have very little strength to do anything, and feel like all my muscles are constantly aching.
I have difficulty swallowing pills, so I am taking Neurontin in the liquid form, but it isn't helping much. I'm on a low dose, but going any higher gave me severe headaches. I tried the lydoderm patch, but that didn't do anything for me. My neurologist said there really isn't anything he can do for me and referred me to a pain specialist.
I'm depressed, sad, and have begun to feel angry. I don't know what to do and at the same time feel that if I don't get this neuropathy under control I just may lose it.
A recent episode of really severe pain brought me to the emergency room, but even they couldn't help me. At times I feel like my entire body is burning.

I'm thinking of going to Mayo clinic's pain rehab program in Minnesota as a last resort at getting my life back. Have any of you been there, and was it helpful in managing the pain?

I'm feeling so hopeless right now.
Thank you so much for reading this.

You may be able to go to a specialty neuropathy center that was closer to you than Mayo, such as Jack Miller in Chicago, Cornell-Weill in NYC, Massachusetts General, Jacksonville Shands in Florida, Johns Hopkins in Baltimore, The University Of California at San Francisco Med Center . . .

Also, can you tell us what type of testing you've had? It's been the experience of many of us that unless one is under the care of a really savvy neuro, or at one of these kind of centers, the work-ups for possible causes of neuropathic symptoms can be patchy or incomplete--doctors just don't know--which is why I often recommend the Liza Jane spreadsheets (very good for tracking test results over time and suggesting others to doctors):

www.lizajane.org

As well as the Poncelet protocols:

http://www.aafp.org/afp/980215ap/poncelet.html

And this listing of serological tests for neuropathy causes put together by Dr. Norman Latov at Cornell-Weill and Quest diagnostics:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

I understand, totally! My neuro answers all my questions and is amazing at testing and very informative but he keeps me on the same Medications. IDK what to do!

Hi Miriam! I'm new here too and certainly relate to your feelings of 'hopelessness' !
You sound exactly like me (but I'm 20 yrs older )

In some of my initial diagnostic workup, it was discovered that i had hyPOthyroid, which contributed to alot...so i figured once i got that under control with medications i'd be good to go. WRONG Neuropathy is the most mysterious and wicked curse I have ever known !
After 5 years and thousands of $$ worth of ruling out everything else, I have come to the conclusion that there IS no conclusion! To me, first and foremost has been hooking up with other people who understand and going thru the same battles......once you've hooked up and realize you are NOT alone, then comes the serious homework.....look on the websites that people share on this forum, read other people's stories of tribulation and triumph. TRY to have some semblance of humor....and hope......and eventually we WILL have our own story of triumph! i hope....

Please hang on to hope......
God Bless
Rae

Thank you all so much for your replies!
Glen, I live in NY. Dr. Latov at Cornell is actually the neurologist I am seeing and he kind of gave up on me (at least that's how I feel). The reason I am thinking about Mayo Clinic, is because they have a 3 week pain rehabilitation program that sounds amazing, at least in theory (you can check out their website), and I haven't been able to find a comparable one that is closer.
However, I haven't been able to find anyone with neuropathy that has gone to this program, so I don't know how effective it really will be to help manage neuropathic pain.

Joshua, how are you feeling with the meds that you are currently taking?

Rae, thyroid was tested and found to be normal. I'm sorry that that didn't get rid of the neuropathy for you. How are you feeling these days? Have you tried any pain management center?
I wish I could have some humor, but as each day passes, and my hope to live pain free decreases (or at least with some less degree of pain), it gets more and more difficult to put on a show for others and go with the flow.
I have two small children, a wonderful husband, and I just feel terribly sorry for them for having to live with someone with issues like mine.
I haven't hooked up with anyone who has neuropathy, and as much as a good friend/co-worker of mine tries so hard to understand what I'm going through, there is no way I can expect her, or any other healthy individual to be able to understand what kind of hell I'm living in.

I am currently seeing a psychologist because if the physical pain isn't enough, I am depressed on top of it all.

Wish I could be as optimistic as you (and some days are better than others in this area), but today is just not my day

I am just so sorry for someone so young as yourself to be dealing with this crummy illness. I hope you find success with some form of treatment to ease your pain. God Bless you.

jakatak ... thank you.

I'm sorry you are feeling this way as well. This whole nasty thing comes on as shock after shock until you realize all the things you are wondeful new things your body is doing. I think you are well aware of everything now and you are feeling overwhelmed by it as I did. The biggest bit of advice I can give is to find your triggers. What makes your pain worse? I know that sitting a certain way or reading with my head down, or the worst: sleeping on my stomach, elicits the symptoms. As well when I press too hard on something, like typing for a long time starts to agitate things until I start twitching or start getting the electric zaps.

Is there any way when your symptoms occur, that you can think of what you might do that coincides with the pain or uncomfortable? Another example, I noticed when leaning over many times I would start to twitch feel pain and get burning sensations in my limbs. Likewise, I used to be able to exercise without much problem besides some persistent leg pain. Then all this stuff and I had to learn that when I started feeling a certain way, it was time to quit or slow down or adjust. If you can tolerate it, I would get off the meds for a couple days and figure out what your triggers are if possible. Neurontin blunts pain sensations, so you can't get a good map of this without going cold for a day or 2.

As far as taking Neurontin, I had problems as well(made reflux worse, brain fog, other problems, etc). So, I started researching herbal alternatives and found the herbs: Bacopa and Gotu Kola. I took these in tandem for the better part of a year and my depression lifted and was able to think clearer and recognize and work around these triggers even better. Both of these herbs stimulate the neurotransmitter Gaba like Neurontin does, but in addition increase Acetylcholine(good for nerve rebuilding) and Bacopa increases Serotonin(good for Depression) and increases endogenous levels of Antioxidants SOD, Catalase and Glutathione. As well I started using Magnesium Oil(helps build and repair nerves and function and is a muscle relaxer, increases ATP cellular energy, the list goes on and on.) I also take Taurine(increases Gaba, reduces inflammation, detoxicant)

Antioxidant therapy for us is important(what the doctors won't tell you). What I think you eventually want to start taking maybe in tandem with other herbals is R-Alpha Lipoic Acid(the best medicine to treat root of neuropathy)and Acetly-L-Carnitine(increases acetylcholine and cellular energy, most powerful nerve rebuilder). PM or respond and I can give you more information if you need. I think it is ridiculous that doctors don't have any of this information and let people suffer.


This is just from my own experience and research:

In terms of importance for Small Fiber Neuropathy:

R-ALA
Acetyl-L-Carnitine (ratio is 2 to 1 acetyl to ala) (don't take acetyl-l without R-ala)
Magnesium Oil
Fish OIl(get a quality one)
Taurine
Gotu Kola
Bacopa
MSM(detoxify, pain)
B-12
Multivitamin

AT ANY AGE!!!!
I've had it for 6 years and the great 'guru's aren't always the ones you need NEAR you to treat you? I've seen area wide GURUS AND Local 'gurus' and I gotta admit that after seeing over NINE neurologists? #'s 2 &3 were the ones for me. I got diagnosed IN TIME for an auto-immune condition the first 2 neuros wrote-off to other issues...not realizing that those other issues were a RESULT of the primary one? AND, I kid not! The diagnosis of 'mere' PN was 'found on the internet' BYthe ER DOC! That he said no more than 'I found your problem on the 'net' and I know what to do...and not tell me ALL he found? I'm not a happy camper for the long term. Especially as delayed diagnosis created additional and unnecessary medical problems. Some of them permanent.
Miriam, I am saying this not to scare you, but, with your swallowing issue? [I too hate huge pills?] I think you mite be doing good to get another neuro opinion. Second opinions are cheap compared to total LIFE? Golly, be safe w/another opinion, not SORRY!

Keep at the diagnosis! Keep faith that YOUR BODY is saying WRONG! a LOT?
Keep HOPE that you will find THE doc to help YOU as a person. I was lucky, and super persistent in keeping at finding out what-the-fundge was going on with me? While I could! You WILL Find that doc! I have faith in that and in you - 's - j

Hi Miriam Im a New Yawker also from across the river in Long Island City.
There are many medications to take for PN pain and individual ones work for some people and not for others its a hit or miss. Titrate up titrate down its a real PITA. Its important to find a neuro that you can work with and who is up to date on the latest treatments for PN. I have heard less than overwhelming praise for being treated by Latov both online and from people in the NYC area who are or were treated by him. In all honesty to me he sounds like any other schmuck neuro who loses interest after a few tests and passes you off to pain management. There are all too many neuros out there like that. From people ive spoken to if you arent a candidate for IVIG he loses interest. A pitfall of using a research oriented medical center. If you dont fit into their interest they lose interest. There might be a better neuro for you there at Cornell. Glenn knows them you can ask him.

As far as other people knowing about what you are going through, in another thread Melody has posted about a support group for PN that meets in midtown Manhattan the third thursday of the month. There you can meet and talk to other people in person who know something of what you are going through.

Dont feel guilty about your children, im sure you are doing the best you can and as someone who as a kid had a mother battle hodgkins back in the 60's for five years believe me they are happy to have you.

A few months back i started taking Elevil (amitriptylene) at night for throbbing and burning pain at a low dose 25 mg and it has helped with those pains and also to go to sleep and stay asleep. They are very tiny pills.
Oh yeah do you have any idea of the cause of your PN? Take care and hang in there.