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Also to Newcomer Jane

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Hi Jane.

I misplaced your original email, but I believe you are the one with neck,

shoulder and back pain and weakness??? I'm wondering if that's you because if

so, we share some similar symptoms. Many times I find it particularly

difficult to hold my head up. It's strange...it's one of those thing you

never think twice about, until it becomes work to do it. Both of my siblings

and myself seemed to have had neck/back problems before the CMT symptoms

started to progress. Interesting.

Well, in case it wasn't you who had those symptoms, I'll stop now! Welcome to

the group!

Nita

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  • 2 weeks later...
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nitars@... wrote:

> Hi Jane.

> I misplaced your original email, but I believe you are the one with neck,

> shoulder and back pain and weakness??? I'm wondering if that's you because if

> so, we share some similar symptoms. Many times I find it particularly

> difficult to hold my head up. It's strange...it's one of those thing you

> never think twice about, until it becomes work to do it. Both of my siblings

> and myself seemed to have had neck/back problems before the CMT symptoms

> started to progress. Interesting.

> Nita

>

> Yes, I have a lot of neck and back pain. I've had stiff neck muscles and a lot

> of sore muscles in my back

> for decades, long before my diagnosis of CMT1A. Using my muscles at all,

> like extending a hand for more than a few seconds and holding my arm up

> makes those muscles sore, which in turn, gives me a bad headache. I use

> muscle relaxers and take a mild pain medication for that (Duradin)

> and it will knock it out either very quickly if I do it soon enough, or

> over the course of a day or two if I don't. I have weak neck muscles.

> I've learned the hard way that just lying back over those sinks in hair

> salons to have my hair washed can bring on several muscle pain the next

> morning. I sometimes go to a prayer meeting, where we hold hands across

> and around the table while we pray intercessory prayers for others. That has

> provoked some muscle pain.. I've learned not to extend my arm, but rest it on

> the tablke, and not to stay in one position long.

> I saw a physiatrist recently and I have my first sesson today with a

> physical therapist. I am excited about the possibility of strengthening

> muscles and increasing flexibility, but I'm also anxious. I've gotten warnings

> and good advice from CMTers about the neccessity for the RIGHT kind of

exercise

> and warnings about damage that can occur with the WRONG kind. Wish me

> luck...Jane

> Also, I don't know what I did to make this text unlerlined and in blue, so i

> apologize for the ill manners.

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