Idiopathic Peripheral Neuropathy
 

I was diagnosed with this about four months ago. My doctor first tried one medication, now on another. I am taking nine pills a day and I see no relief whatsoever. I would love some input from others who have Idiopathic Peripheral Neuropathy.

Lemme guess, you're taking gabapentin all day long. Have you tried tramadol?

Could you tell us what you are taking? Gabapentin often has to be combined with an opiate to relieve severe pain, that's if the Gabapentin is helping t all, it often doesn't. It does help me, my legs and feet buzz if I miss a dose, but it doesn't touch the deep "bone" pain. (it feels like the bones are being crushed).

My PN is hereditary, but symptoms are similar enough. Lots of idiopathic cases turn out to be hereditary if other causes, diabetes, toxic meds, autonomic, are ruled out.

Hi Bruce, Welcome.

Yes, I'm DXed idiopathic too, but since the doctors "gave up" I've learned more, and gotten somewhat better, on my own -- hanging around here.

Before acquiescing to the heavier stuff (gabapentin, Lyrica, opioids) I would at least try the supplements first (See Sub-forum and Sticky threads). If they don't help, nothing lost.

If it can't hurt to try it, then it can't hurt to try it.

My neurologist wrote me a knee-jerk scrip for gabapentin without even thinking about it or asking me -- and 300mg x 3/day at that. I had to insist he start me at a lower dose (tried gabapentin before for chronic pain, so I knew what to expect). It was about that time that I was reading about B12, RLA, ALC, B5, et al here. The neuro dismissed them.

RLA worked better, and sooner, for me than gabapentin, and the bottle of gabapentin is still sitting in the cabinet 18 mos. later. Adding B5 to the RLA helped even more.

Since the original DX, I've found quite a few things that have helped, and some that the neuro missed, and I'm figuring this thing out.

Liza Jane's Charts are good for those DXed idiopathic who want to pursue it further, though treatments may be the same.

Doc

That is what I am taking. I see the neurologist next week and will ask about the other drug. I am worse since starting taking gabapentin. I now walk like an eight year old and I am sixty three. :( Not fun. Thanks for your input.

Unfortunately, neurologists don't seem to be open minded to anything beyond what the pharma detail people tell them. They're not that interested in side effects, any more than they're interested in nutrition, or even really finding the cause.
There is a wealth of information on this site, from causality (gluten, etc.) to remediation (B12, etc.).
The good news is that is often largely reversible; it just takes time. I'm turning 66, and I've been working diligently on this for the past 6 months. I'm making some progress, and have set a goal of being healthy in the next year or so.

hereditary
 

I have the hereditary too - do your hands suffer? I'm 61 and wondering how progressive this stuff is - probably had undiagnosed symptoms since I was mid-thirties, not diagnosed till 06. Gabapentin has made all the difference for me, can tell if I miss a dose (feet, yes, but attitude too... goes down hill, catch myself feeling sorry for myself, etc.) While there are cognitive effects of the gaba, I'll take them for the pain mgt, gains
mslincolnaol

Could you share what your hereditary condition is? Thank you.

I can only tell you my experience, which is based on CMT type 2, primarily axonal, small and large fiber sensory- motor neuropathy. I was clumsy as a child and unable to run, easily tired, but not in pain. In my 30's I started to develop numbness in my toes, and leg pain which I attributed to varicose veins. I did have a laminectomy at 38 to remove bone chips from the sciatic nerve. I ignored the numbness until it passed my ankles a few years ago. I developed a severe infection in my foot which went unnoticed because I felt nothing. The podiatrist insisted that I see a neurologist immediately as it was obvious I had a severe neuropathic condition. The surgery to clean the wound was done without anaethesia, my feet and legs are that insensate.
My reason for not mentioning the numbness to my PCP was fear of diabetes, the only thing I knew of that caused neuropathy. Of course I know better now! My family history is murky because of adultery, but the CMT is there on my birth father's side.
It is progressive. I am now fifty. The numbness has passed my knees and i get pins and needles in my thighs. My skin biopsy showed deterioration even at upper thigh. I walk with a hiking pole, two if outdoors. I still enjoy walking, but only on fairly level ground, hills and steps are difficult to impossible. The pain in my legs usually requires oxycodone 7.5 if I have to function, along with the gabapentin. This is a relatively low dose from what I have read, so I am fortunate.
About the hands. I am a very accomplished needle woman and seamstress. I make lace, quilts, heirloom projects of all types. I used to consider myself a professional fiber artist. In the past few years my hands have become so clumsy that projects take much longer to finish, so that I lose interest. Also, my hands claw up from holding a needle or crochet hook for any length of time. I recently knitted a lace christening gown for my first grandchild. It took six months, a few years ago it would have taken two at most. A few days ago I noticed a tremor in my right index finger. My toes do this often, the muscles are quite deteriorated, but this is the first time I saw my hand do it, and I am scared.