[gypsymama]

Well, I guess I will start with the big one, I was diagnosed with muscular dystrophy as an infant. The type that I have is called Charcot-Marie-Tooth. Charcot-Marie-Tooth, or CMT, is the most commonly inherited neurological disorder. CMT patients slowly lose normal use of their feet/legs and hands/arms as nerves to the extremities degenerate and the muscles in the extremities become weakened because of the loss of stimulation by the affected nerves. Many patients also have some loss of sensory nerve function. CMT is one of the 40 diseases covered by the MDA, but unlike muscular dystrophy, in which the defect is in the muscles, CMT is a disorder in which the defect is in the nerves that control the muscles. In my case, the progression of the disease has been more rapid then usual and I am one of Ohio State University's favorite lab rats. It hit me in my teen years. The last time I ran, I was 17, and it's all gone down hill from there. Now, at only 31, the nerve damage in my hands is so extensive, I have lost most of my fine motor skills and have been deemed permanently disabled. I have nerve damage up to mid-thigh in both of my legs and require leg braces or a cane for walking, but hey, I'm still walking. Now, the jury is still out on whether or not this disorder causes pain. In my case, the pain is terrible, as is the case with everyone in my family with the disorder. It's worse in the morning, before the morning meds kick in.

Onto the Fibromyalgia that so many of us chronic pain sufferers are familiar with. I was diagnosed 2 years ago after going to the doctor with a lot of back pain, which has nothing to do with CMT, so I was tested and Fibromyalgia was deemed the culprit by my neurologist.

So far, my pain has been manageable most days with Neurotin. A lot of the sensory nerves in my feet and legs no longer have much feeling, so that eliminates some pain. But some days, the pain is just too much for me. Those are the days I don't get out of bed or off the couch.

I recently signed up for Chronic Pain Support Groups in my area, and my first meeting is this week. I'm a bit nervous. I'm not sure if they will be very helpful or not.

[Shadowghost]

My father had CMT. I can only relate to what you're experiencing as someone who witnessed what CMT can do. My father never talked about his condition, never said anything to the rest of us about what he was going through, but we could all see the pain he was going through. His father had a different form of Muscular Dystrophy, I don't know what type, just that it killed him before I was born. I watched the disease slowly cripple my father. I hate myself for some of the things I used to think about my father. We didn't have the best relationship, and uh... I forget what I wanted to say in this post, originally. If you need someone to talk to, Gypsymama, I'll be glad to lend an ear.

[Christina86]

I hope the support group will be helpful for you!

I'm sorry, that's really rough - especially dealing with a degenerative disability, that's seemingly a lot worse than dealing with a fairly stable disability (I've got Spina Bifida, congenital but not degenerative really).

Let us know how the group goes, and do give it at least 2-3 meetings to see if it's right for you or not.