I can't stay out in sunny weather and... - Charcot-Marie-Too...

Charcot-Marie-Tooth UK

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I can't stay out in sunny weather and can't cope with being cold, cold seems to really affect me, does anyone else get this problem.

gunner profile image
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gunner
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spamscdh profile image
spamscdh

Sounds similar to my symptoms of Raines Disease. Even in extreme heat my legs are still very cold and red. Doctors say it is related to CMT.

strawberryshortcake profile image
strawberryshortcake in reply to spamscdh

hi,what is Raines disisease? I've got Raynards disease.Is it the same thing?

I@m the same.heat makes me exausted but the cold makes me feel awful too.I had this problem ages before I knew I had CMT and couldn't understand what was the matter as no one else I knew seemed bothered by the heat or cold. I haven't found a solution but would like one.sorry this isn't very helpful.

gunner profile image
gunner in reply to strawberryshortcake

Thanks it's not being silly then I haven't found an answer either I can't wear lots of clothing to make sure I'm warm but I have trouble breathing and go stiff in my neck and back which gets really painfull and on the flip side have no energy and feel drained off energy in the heat. R we a minority??