Spreading Neuropathy - Neuropathy Message Board

mumzy · 01-14-2006, 06:13 AM

Hi there can anyone offer any hope of this disease stopping. I have had small fibre neuropathy for four years and for about two it was mainly in my feet and a horrible burning type feeling with complete inability to get hot in any way (sun, exercise, baths etc.) made it much worse. I was managing to an extent but now it has spread to my thighs and is a completely different pain - deep deep cramping and contracting (like giving birth) in the thigh area. I can't sleep or sit for long and have to keep moving and stretching but to no avail. I have tried all the usual suspects - neurontin and lyrica but seem to have really bad side effects from meds. Taking ultram with some relief and have now been given Cymbalta to try. Does anyone out there have the same as me and if so how are you coping? I would really appreciate hearing from anyone in the same or similar situation - especially if you have been given any hope of recovery! Thanks Pauline

6foot3 · 01-14-2006, 08:38 AM

What type of Neuropathy....Diabetic, CIDP, etc...??

mumzy · 01-14-2006, 10:56 AM

They can't find a cause say it's idiopathic and affecting the small sensory fibres. Any ideas?

6foot3 · 01-14-2006, 12:13 PM

Quote:

Originally Posted by mumzy

They can't find a cause say it's idiopathic and affecting the small sensory fibres. Any ideas?

I would research CIDP and MMN as these are Demyelinating Auto Immune Neuropathy's. Usually a Lumbar Puncture can tell by high Protein count in fluid .You may want to discuss having one performed with your Neurologist....

ColtShorty · 01-16-2006, 12:09 AM

Quote:

Originally Posted by mumzy

Hi there can anyone offer any hope of this disease stopping. I have had small fibre neuropathy for four years and for about two it was mainly in my feet and a horrible burning type feeling with complete inability to get hot in any way (sun, exercise, baths etc.) made it much worse. I was managing to an extent but now it has spread to my thighs and is a completely different pain - deep deep cramping and contracting (like giving birth) in the thigh area. I can't sleep or sit for long and have to keep moving and stretching but to no avail. I have tried all the usual suspects - neurontin and lyrica but seem to have really bad side effects from meds. Taking ultram with some relief and have now been given Cymbalta to try. Does anyone out there have the same as me and if so how are you coping? I would really appreciate hearing from anyone in the same or similar situation - especially if you have been given any hope of recovery! Thanks Pauline

Oh how I wish I could offer you some help in curing your horrid disease!! I have been suffering with small fibre neuropathy for 10 years & have yet to find anything that will even touch the pain including morphine, which I found out the hard way that I am apparently allergic to.

My pain started in the bottom of my feet & has progressed up to my knees where it has stopped for know. I started taking Methyl B-12 4-5000mcg pills a day about 9 months ago & the pain has not gone any farther than my knees. The pain has not decreased one bit but at least the progression has stopped.

I just found this website today & you are the first person I have found on any site that has posted that they have small fibre neuropathy. I hope that we can talk more as the one thing that I have learned from this disease is that no-one can understand/comprehend what you are going through until they have walked in your feet!!