I finally have a diagnosis of CMT. I take 2700 mg of gabapentin each day and 90 mg of cymbalta. I start physical therapy this week. To soon to tell much of a difference. I had a better day today. This is the end of the road for me. Low impact yoga and stretching has been very helpful. My goal is to be able to drive and work again. Good Luck!!

Do you know the type of CMT that you have? What affects are you having? Be careful with physical therapy. Hopefully the person will know something about CMT. You cannot build up atrohied/dead muscles. The healthy muscles up to a point. Just curious. Thank you.

I have gabapentin and instructions on how to start! I hope this works. The stinging, burning, needle, heavy, paralyzed feeling is intense. I have started to get muscle spasms and cramping along with the twitching... This sucks.

Still mentally in a whirlwind. Still don't think I will be able to cope even if Gabapentin works. My family is in shreds. My parents are fighting all the time, my dad has turned to drinking to cope. My husband is depressed, sad, feels helpless, hopeless, angry etc, trying to learn how to adjust to this new crappy life for us.

hope for healing is gone. hope for improvement is gone. hope to stop progressing is rapidly fading. I feel like my body desperately needs a massage. but I can't stand for anything to touch me let around rub me.

Something is being missed! I know it. Yet, I can`t doctors to do anymore testing (other than my biopsy later this month).

I feel like u are the only people that understand. yet, I feel like I have gotten what I can from everybody here. There doesn't seem to be much else. When I come on here I keep hoping to hear stories of recovery and when I don't hear them, I get even worse. Trying to "hang on" like I've been told, but don't see much point.

You can have hope that some of the meds they have today and that you haven't tried yet will offer enough pain relief to get some of your life back.

I have that hope for you.

Debi from Georgia

Question. My doc said to stay with the nortriptyline and add gabapentin (gave me dosage and schedule). however, I take the nortriptyline right when I climb into bed. Can I take gabapentin at the same time? Or should I space them apart like gabapentin at 8pm and nortriptyline at 9pm?

Seems like it would be okay either way but you can call pharmacy if you want to be sure....

Canagirl, I really dont know if any problems taking gabapentin at the same time as your other medication but I dont take the nortriptyline. The most important thing I was told was ref spacing out the gabapentin at regular intervals. I was taking it all over the place so when I quickly got up to 2700mg (which I did quickly due to severity of pain) I was taking 300mg capsules randomly all over the place. No one told me until I saw the GP a few weeks later that I had to take 900mg (3 capsules) first thing, then the next 900mg (3 capsules) at lunchtime, then the next 900mg (3 capsules) around bed time (I do 9pm). As long as there is no more than 12 hours between my night time dose and morning dose I feel it works best for me.

That might not answer your question directly but I just cant believe how little info I was given about spacing out doses. One day I took no meds ever, a week later Im taking 9 capsules of gabapentin and 2 naproxen a day with the occasional tramadol.

A little medicine box may help. I always forgot I had just taken my gabapentin and sometimes took the dose again because I had forgotten and was a bit spaced out from the side effects. That wore off by the way.

Canagirl: You're right, there aren't a lot of stories about people making full recoveries. (I suppose the few that do fully recover don't need this forum anymore, they just go back to their previous life.)

But every time I read some posts here, I see people who are managing their disease. Some are getting better, a little at a time. Some are holding steady, but finding better ways to cope with whatever their personal reality is. Some are going downhill, but are making the best of every day they have.

But they all have lives. Maybe not the same lives they had before - but they have lives. And, those lives have value to them.

As long as your doctors are still running tests, and trying various medications and therapies - there is still hope for improvement. Seek pain relief in the short term. Once you get the pain under some measure of control you can return to searching for things that will slow down, stop, or even reverse the disease process.

I ramped my gabapentin consumption up to 2400 mg over time. My current schedule is this:

9am - 1 tab (600 mg) gabapentin
3pm - 1.5 tab (900 mg) gabapentin
9pm - 1.5 tab (900 mg) gabapentin and 1 cap (25 mg) nortriptyline

I do take a bunch of supplements including magnesium, which I take at noon so it doesn't interfere with gabapentin absorption.

I also watch the temperature of my shower, because it can set off burning all over my body.