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Wondering if nerve pain is common with FSHMD

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  • May 9, 2013 at 1:57 am #74844
    Wondering if nerve pain is common with FSHMD

    Hello, my name is Stephanie and my neuro thinks I have FSHMD. We haven’t done any testing yet but both scapula wing and I have facial drooping. I have read up on FSHMD and what puzzles me is that I have a lot of nerve pain that affects both arms and left leg with permanent damage in right arm and left leg. I have read that with FSHMD you do get nerve damage but I haven’t read anything about the pain and with some disorders there isn’t pain with nerve destruction so I’m wondering if it’s connected or if the diagnosis could be incorrect or I’m just not completely diagnosed yet? The muscles in my arms, neck, back and head also seem to seize up when in use and they spasm really bad. Is this indicative of FSHMD? I was also wondering about my face. My eyes don’t seem to be affected other than some tearing throughout the day and in the morning my eyes are dried really bad which I’ve read can be because they are not shutting properly during sleep. I would appreciate any input. I don’t see my neuro for a few more weeks and just wanted some answers and who better to get them from than the people who have the disease? Thanks and have a great day!

    Sdmelvin
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    May 9, 2013 at 10:36 am #88573
    Re: Wondering if nerve pain is common with FSHMD

    EYES – I was told many moons ago that my blinking isaffected and as its function also draws moisture over the eye I could be prone to dry sore eyes. More recently my eyes have become more watery and I have put it down to a bit of drying out [not helped by the time I send looking as some kind of screen].

    NERVE PAIN – I sometimes get a sensations in my arms which I describe as a muscle being stripped from the bone. This comes about when doing something new or retuning to an old movement. EG, I have ot crochetted for a couple ofmonths when I return to it my muscles will react this way, I have to ease myself back into it.

    If I have been doing a lot of walking Iget something similar in my calf muscle, and have to stretch it out.

    Have you been referred to physiotherapy?

    I'm always the animal, my body's the cage

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    AM
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