I was wondering that myself about RLA. I haven't taken any going on 3 weeks now, and so far, no burning.

Doc

Well, my Amazon order came yesterday and I took one 588 mg. pill at about 2 pm. Mistake. Didn't sleep all night. The extra energy is very welcome but not at 1 am. Definitely increased energy. I am also cutting my mid day dose of Gabapentin from 600 to 300 mg. so far no increase in pain, slight increase in feeling furry things running all over feet and legs. If nothing else it gives me something new to think about.
Trying desperately to lose weight. Seems stuck, probably combined effect of meds, inactivity, and looming menopause. I cannot stand up or walk carrying the baby, so I assume the same is true of extra weight overwhelming weakened muscles. Physical therapy is also increasing muscle spasms, but I am hopeful of strengthening something.
I will take it early in the morning and see if that works better.

Just wondering if the physical therapist knows that you have CMT for one thing. And if they do know that - how well do they know CMT. Perhaps doing too much exercise or whatever for a CMTer. The same can go for message. I cannot take deep message at all. Just throwing that out there.

Thanks Kitt, yes they know, no they don't know it well. No one here seems to. Even the neurologist wasn't interested. My son's orthopedic surgeon is very expert in CMT (this son has hip dysplasia, not CMT, he is adopted) and said most of the interest is in pediatric CMT. They are going very slow and gentle, but I definitely notice the exhaustion. Why should standing on tip toes and heels ten times each feel like climbing Mt. Everest? I will take care, but am curious how much of the rapid degeneration is from forced inactivity this winter.

I was wondering about massage, whether it would hurt, help, or just feel better for a day or so? I asked the therapist, he said he would be able to tell if massage would help in a few weeks as he is trying to loosen my back muscles. I have had a big increase in spasticity the past few months.

Just trying to be a good patient. It seems like you have to accept the doctor's suggestions most of the time in order to be treated decently.

I cannot stand on my heels or my tiptoes. Haven't been able to do that for twenty years. No problem though until much later as CMT progressed. Hadn't even noticed it back then as I had very few symptoms. Nothing much to speak of.

The deep message they (a chiropractor who really knew nothing about CMT only sports stuff) did on my back really crippled me up. I could no longer sit in my recliner. That took maybe three weeks to be able to do that. However, I can no longer recline in it to this day. That message, and only one time of which I really was not aware as it did not hurt while it was being done, did a number on me. But that's just me. I know some love it. Definitely not for me.

I am taking Acetyl L Carnitine for awhile now. I am not sure if it works together but i still take it hoping it will work.

I started on reducing my gabapentin for over a month ago. The burning has become intense but i am trying to hold on to this reduced 1500mg (I was taking 1800mg). I will stay on it for as long as i could. Anyway, I am using a pain cream which helps reduce some of the pain. I am hoping that if I can reduce further my gabapentin and just use the pain cream, maybe its better for me in the long run.

I feel a little envious Doc, no RLA and yet no burning??? Yay! How do you that???

I can't actually stand on mine either, I am supposed to go up and down ten times, while holding onto a support. It is more tiring than I would have thought possible for such a tiny movement. My left foot barely leaves the ground.

Deep massage doesn't sound like a good idea. It hurts just thinking about it.

Can't stand on my tiptoes or heels even holding onto a support. I do remember when I would use the counter back then and stand on my tiptoes and ever so slowly go down - I would go off of my tiptoes and onto my feet. And not long after that I could not do it at all. This was like twenty years ago.

Do they think that that action will help strengthen your feet? It will not IMHO cause CMT progresses regardless. We lose the ability no matter what.

And no deep message is not for me at all. Some people, even CMTers,
like it. Not for me. No thanks. :Noooo:

Well, we are trying. I do not expect the feet/ ankles to improve. I can barely move my ankles at all. I lost most of the range of motion in my left arm last spring. We got about a third of that back and some strength, but most of it is gone for good. My legs have gotten so weak this winter, the pain when I stand is a lot worse. I thought I would try and see what happens. My doctor seems to feel like physical therapy is always a good idea and I find that I am taken more seriously if I try it. The therapist is very good about quitting when we stop seeing progress.