[MiriamS]

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.

[glenntaj]

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

[JoshuaY46012]

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!

[Rrae]

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

[MiriamS]

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

[jakatak]

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.

[kayru11]

i am so sorry. i feel for you. 20 years ago i began to have the exact symptoms. it began with burning and tingling in my feet, then increased in both legs and feet, eventually in arms and hands. NO doctor could diagnose me even though i had history of a tick bite. i went 5 long miserable years undiagnosed with lyme disease. by the time i was finally treated it was too late to stop the nerve damage and i have now lived with the neuorpathy 20 years.

has any doctor mentioned lyme? i was diagnosed with everything under the sun, all wrong. the lyme was able to invade so many systems in my body...CNS, bones, heart, i even have some nerve damage in my inner ear area so i deal with a lot of balance issues.

you sound exactly like me 20 years ago. i am so, so sorry you hurt like that because i can and do relate.

if someone has already mentioned lyme i am sorry. i think i read most of the answers but may have missed some.

kathy

Originally Posted by MiriamS

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.

[Kitt]

Originally Posted by kayru11

i am so sorry. i feel for you. 20 years ago i began to have the exact symptoms. it began with burning and tingling in my feet, then increased in both legs and feet, eventually in arms and hands. NO doctor could diagnose me even though i had history of a tick bite. i went 5 long miserable years undiagnosed with lyme disease. by the time i was finally treated it was too late to stop the nerve damage and i have now lived with the neuorpathy 20 years.

has any doctor mentioned lyme? i was diagnosed with everything under the sun, all wrong. the lyme was able to invade so many systems in my body...CNS, bones, heart, i even have some nerve damage in my inner ear area so i deal with a lot of balance issues.

you sound exactly like me 20 years ago. i am so, so sorry you hurt like that because i can and do relate.

if someone has already mentioned lyme i am sorry. i think i read most of the answers but may have missed some.

kathy

Thanks Kathy, Lyme disease can do much damage. A person we know had much damage and now has a fibulator.

[Turkishsmalls]

Hi All,
Im very glad i found this place and have been able to read everyones responses. I am 35 yrs old and was diagnosed with SFN one year ago but have been having symptoms for about 3-4 yrs now. I have been to several doctors and am about to leave for a pain mgmt clinic in a few mins. I even saw a Dr at Barrows Neurological Institute who said to me when i asked what causes this, "well buddy, its just one of those things where life sucks". That was the last time I saw him. I have tried countless medications including neurontin, cymbalta, lidocaine patches, lyrica and pain meds including oxycodone, tramadol, butrans patch, nucynta, vicuprofen..etc. The only thing that has had any effect in which i can tolerate is oxycodone. I have read that many people take the gabapentin/neurontin, but of course when i took the lowest dose, i woke up with the room spinning and throwing up. On the lowest dose!! It has been very frustrating to say the least. And i have a very understandable wife and two little girls, but it pains me to see their faces when i have really bad episodes and can hardly get off the couch. "daddy are you sick?" My girls are 2 and 4 and my world. I just pray they dont ever get this.
I have to leave now, but will post my results on the pain clinic. Wish me luck. Thanks to all who share with us!

[echoes long ago]

i hope you made out well today at the pain clinic.

that quote from the Barrows neurologist, "well buddy, its just one of those things where life sucks", is a classic!