Pereferal neuropathic pain ( CMT type 1(a) )

[Tandarts]

Can anybody with similar problems tell me if one has to keep on taking 300mg Lyrica (pregabalin ) to stop the neuropathic pain attacks ? I get it on one toe only ? Lyrica makes me drunk and sleepy which is not good when you are only 65 yrs old and still drives.

[chicodex]

I have CMT type 2 axonal and have neuropathic pain symmetrically in feet, legs arms and hands and since last year the symptoms have taken a quirky turn towards visceral tissue and deep abdominal pain that comes in waves lasting up to 2 weeks... it's the nervous system - all connected up - it took 15 years to get a proper diagnosis and it's good to be able to put a label on it.

I was prescribed Gabapentin - after 6 months on it I began to have the most intense pain in my upper and lower jaw - my dentist decided to take out some of my teeth, nice! I decided to stop taking the Gabapantin and the pain in my remaining teeth went away as if by magic...

If I were you I would be extremely careful about taking anything that is prescribed to you unless by a very well qualified neurologist - and even then do a self administered trial period.

I was prescribed Amytryptiline - I took one 5mg tablet and was in all kinds of trouble for 3 weeks - I don't want to tell you how bad it was...

What I really wish to convey is - be very careful what medication you agree to take, make sure your G.P. has done their research and above all, your trust.

[Forester]

This may not be related to your issue but...I get a pain from time-to-time which I can only liken to repeated severe electric shock through the little toe on my left foot...sometimes a different location but mostly the little toe....can last two or three days without a break

I have seen three different Dr's in our practice, and one private physiotherapist, none of whom have been able to give it a name, nor even seem to think it matters much (they should try it for a couple of sleepless nights then see how insignificant they think it is) I have not had any prescription for it but I have found that my TENS machine can be quite beneficial.

I have tried several "magic sprays" including Ralgex and a couple of others...at the moment the one that works best ...and really does work quite well...is Boots Pain Relief heat spray.

I don't know if what you are discussing is the same pain...but those things are worth a try...better than dodgy tablets anyway.

[Tandarts in reply to Forester]

Thank you very much. I had an operation 40 yrs ago to get rid of my hammer toes. The right foot is fine. I think the operation on my left foot was not successful and it might be the reason for the neuropathic pain.

My tens machine helps as well. I will try to get the stuff you suggested .

Thanks again.

[chicodex in reply to Forester]

I have pain in both feet as though there is a rasp file under the skin and a serrated knife embedded in each foot that is being dragged slowly back and forth and all the while the feeling of being burned on hot coals, my hands are not quite as bad but still feel as though they are in a fire most of the the time with intermittent pulses as though I am touching an electric fence and cannot let go.

[Tandarts]

I feel for you because I'm just getting it on one toe and can't imagine how difficult it is for you !! My GP has put me on to Pregabalin ( Lyrica ) which keeps me pain free for a few weeks until the next attack. All the best and keep your chin up.