anyone out there know about small fiber neuropathy

[kittykellieanne]

Im lost and sad over this . I have been suffering for over 5 years now... I want to live life again without the pain.. I have tried all the antidepressants.. NOTHING WORKS...went to the doc again today telling her that I cant even sit for more then 10 minutes anymore.. almost cant drive anymore.. cant sleep because my legs wont stay still and they HURT SO BAD.... they keep telling me narcotics wont work.... why wont they let me try>>??? i dont get it... has anyone found relief from this!!?? please... im desperate!

[Carol in PA]

Dr. Jacob Teitelbaum has written a book about treating pain, "Pain Free, 1-2-3."
This article, from the book, has information that may help you.

Effective Treatment for Neuropathic (Nerve) Pain
http://www.ei-resource.org/expert-columns/dr.-jacob-teitelbaums-column/effective-treatment-for-neuropathic-pain/

Wishing you the best,
Carol

[bugbarb]

I am up from 1500 mg neurontin to 2400mg and it doesn't make my crawlies and gremlins go away anymore completely.  I am getting dizzy, feeling weird and think it may be the neurontin.  '
Do you know anything about neuropathy not caused by injury, diabetes or lyme disease that started centrally and moved out towards hands/feet, but those are least involved.  
send me a private message or email me if it will let you.

[tiamarie2]

hi all -
i'm 29 yrs. old and have been having (neuropathic) pain since i hurt my lower back 6 mos ago - now i can't sit, stand or walk for long because of the pain - i had all the symptoms of SFN - burning feet, stabbing knifelike pains, etc. does anyone have trouble with sitting or standing due to nerve sensitization (more in the area of my injury - low back - plus my legs get splotchy and red when i stand or walk for a few minutes)?

[sofa weight]

has your doctor gotten you any topical medications for the neuropaty? Mine ordered some for me. It works pretty well. I put it on the areas where the nerves feel raw. then.. tah dah. they don' feel raw anymore. :)

[patsy10]

Have you been tested for lyme disease?

[bugbarb]

I call it "atypical idopathic small fiber sensory neuropathy".....sounds serioous...
I got up to 400 mg lyrica and that wasn't enough. Added klonopin and that helped but i don't remember much about the three months I took that combo.  I demanded my brain back and grudginly was transitioned to neurontin.  I am on 4x300mg daily and sometimes take 5 pills.  Still take the clonopin although I am going to ask to get off it too, as it does me no good except for the .....I don't want to care about what my husband says....and I take my dose and everything is fine.....Oh yeah...I am on a handful of psych meds......started those prior to the neuropathy

I believe this is a reincarnation of Lyme disease. I was disabled by it 11 years ago, presented like M.S,  Was on antibiotics for 6 years and made an astounding recovery.  Not 100% neurologically healed but over 90% of what I was.  I believe this is either a relapse or a reinfection.  I have had every blood test under the sun excpet another MRI and I have been proclaimed healthy as far as they can tell. They are wrong. I just started seeing my old ":lyme doctor" from 10 years ago and he understands that I am not ok.

[sofa weight]

I may or may not have SFN, but i do have some kind of neuropathy. I do take narcotics for the pain in addition to lots of lyrica and a small amt or amytripiline. antidepressants don't work for me, but narcotics do help me a lot. it seems like with the lyrica and such, I still have the pain but it isn't as overwhelming or i am too loopy from lyrica to care, but when I reduced the lyrica dosage and added in fentanyl patch, the pain was significantly reduced. then again, It isn't for certain that I have SFN, but most of my pain is from neuropathy of some sort and for me at least, narcotics definitely help and adding those in enabled me to reduce he amt of lyrica that I take and that enabled me to be less loopy.

[auntb41164]

Hi kitty, Have you tried Lyrica...I have peripheral neuropathy...The lyrica gives me some relief ..I also take neurotin..I dont like the neurotn as much makes me feel weird...Both medicenes are expensive..keep in touch..God Bless auntb41164

[billyo]

I have been diagnosed SFN 2-2008, by a QSART Test. have had terrible feet pain, progresses into both leg pain, specially when feet are BAD. I have had alot of meds. nothing works like you, I got small,short relief from epidurals in spine. Pain Patch did help, but i cannot wear at night, and live forever with them. will get back later, must get my 5 year old now.  thanks billyo.