[amit]

I'm celebrating almost 4 years with Neuropathy (idiopathic small fiber neuropathy). What I found out was that there are so many with neuropathic symptoms - some of then don't even know that that pains they suffer is neuropathy, since so many doctors don't know about the syndrome, especially when it is small fibers.
How long do you have your PN? what kind? how it started? How long it took till you to get DX? How do you coop with the symptoms? ect...

[Marty SLC]

Originally Posted by amit

I'm celebrating almost 4 years with Neuropathy (idiopathic small fiber neuropathy). What I found out was that there are so many with neuropathic symptoms - some of then don't even know that that pains they suffer is neuropathy, since so many doctors don't know about the syndrome, especially when it is small fibers.
How long do you have your PN? what kind? how it started? How long it took till you to get DX? How do you coop with the symptoms? ect...

• I've had it 12 years now.
• It started with burning in my arches.
• Has progressed into my legs, hands and face.
• I have Idiopathic PN.
• Took about 3 years to be DX.
• I cope with the pain mainly with exercise, keeping my weight in check, rest and sleep, eating right, tears not to mentioned prescription drugs. (Lyrica and Tramadol)

[Idiopathic PN]

Originally Posted by Marty SLC

• I've had it 12 years now.
• It started with burning in my arches.
• Has progressed into my legs, hands and face.
• I have Idiopathic PN.
• Took about 3 years to be DX.
• I cope with the pain mainly with exercise, keeping my weight in check, rest and sleep, eating right, tears not to mentioned prescription drugs. (Lyrica and Tramadol)

I am still in the process of very active pursuing on finding the cause of my neuropathy. I have had the symptoms last October 2011. My symptoms are not the typical that "starts on the toes and goes upward". My symptoms started in the feet, legs and arms simultaneously. So far, with all the tests I have had, the results came back normal. I will have my skin biopsy end of this month/March 2012.
Anyway, how you are now... Has there been any improvement in your symptoms? I hope so....
What kind of exercise do you do? Since I could not walk now (I used to walk 4-5 miles a day before my neuropathy), I do stationary bicycle. I force myself to do it even my feet and legs are hurting. I wonder what kind of exercise is good for people with neuropathic pain. Have you been on Lyrica since the start?

I am asking because I want to know other's experiences with Lyrica. I am on Gabapentin. It does not relieve my pain completely but it gives me some relief every now and then.

Thank you.

[pinehurstcharlie]

I"ve had idiopathic small nerve fiber neuropathy , diagnosed in the fall but had been in pain for months prior. I have the burning in feet and lower legs. I'm trying to avoid the pain meds as they make me feel so loopy and trying to use supplements that all of the folks here talk about with success. I've found that swimming exercises do better for me as i use to walk in the neighborhood , the treadmill, and the stationary bike . I hope to work up to doing that again and I'm also going to try out tai chi as they say it is great for neuropathy, I 've just also been diagnosed as pre diabetes , after all the other tests where they say no way, ( fasting glucose was fine and so was the 3 hour glucose intolerance ) but the a1c came back right on the border of pre diabetics. Hope this helps

[glenntaj]

--as I've talked about before, "pre-diabetes", or impaired glucose tolerance, can be a cause of neuropathic symptoms, and is suspected in a number of "idiopathic" neuropathies:


http://www.massgeneral.org/neurology...dOaklander.pdf

http://appneurology.com/showArticle....leId=188500771

http://care.diabetesjournals.org/cgi...full/24/8/1448

http://www.neurology.org/cgi/content/abstract/57/9/1701

http://www.medpagetoday.com/Neurolog...rology/tb/3538

[pinehurstcharlie]

Originally Posted by glenntaj

--as I've talked about before, "pre-diabetes", or impaired glucose tolerance, can be a cause of neuropathic symptoms, and is suspected in a number of "idiopathic" neuropathies:


http://www.massgeneral.org/neurology...dOaklander.pdf

http://appneurology.com/showArticle....leId=188500771

http://care.diabetesjournals.org/cgi...full/24/8/1448

http://www.neurology.org/cgi/content/abstract/57/9/1701

http://www.medpagetoday.com/Neurolog...rology/tb/3538

I was not able to open but 1 of the sites as the others "page not found" etc. If you can resend them I'd appreciate it and and one i had to be a member. Thanks

[glenntaj]

Looks like it's time to update the links.

The Jack Miller Center for Peripheral Neuropathy has a little section on this, I just noticed:

http://peripheralneuropathycenter.uc...diabetes.shtml

--but I also want to get to the original papers. Here are some (the first two are review articles).

http://www.ncbi.nlm.nih.gov/pubmed/16448668

http://www.ncbi.nlm.nih.gov/pubmed/18195653

http://www.ncbi.nlm.nih.gov/pubmed/21750507

http://www.ncbi.nlm.nih.gov/pubmed/15610705

http://www.ncbi.nlm.nih.gov/pubmed/18255003

http://www.ncbi.nlm.nih.gov/pubmed/11473085

http://www.ncbi.nlm.nih.gov/pubmed/18923366

http://www.ncbi.nlm.nih.gov/pubmed/11494277

http://www.neurology.org/content/60/1/108.abstract


There have actually been hundreds of papers on this, as this PubMed search page attests:

http://www.ncbi.nlm.nih.gov/sites/en...d&uid=11473085


This should be enough to get even the most recalcitrant doctor to at least consider the possibility.

[Dr. Smith]

Originally Posted by glenntaj

This should be enough to get even the most recalcitrant doctor to at least consider the possibility.

Man, I can think of a few [doctors] I'd LOVE to get into a room with you and have a videocam running... Could be the next viral on YouTube!

Doc