Charcot-Marie-Tooth UK

new to this site


I have cmt type 1 a .i have foot drop on right had many ops on both feet i where afos on both feet an wear trainers i walk with a rollator to occasionally a walking stick,. I live in skirts an dresses .never cover them up.i have very weak legs high arches curled toes an very weak arms an pain in both always aching. Hands feet get very sore my fingers are starting to bend an i am losing my grip an feeling. find it difficult holding pens an writing even with pen grips have to use straws.i have a buton zip graber reachers.i have every kitchen going for bottles lids an tops can openers jar openers peelers etc an house hold tools an personal hair brushes etc.i am unable to lift heavy wrists are weak an like foot drop.i have wrist supports also.take tramodole an pregabalin for pain.get referred to neurologist orthopeadic an pain clinic for more tests.have got really bad in last 2 yrs.have mild arhritis an breathing probs.constant back ache burning feeling in parts arms etc.get sore hips thighs an knees sometimes grinding of bones.can't sit or stand for long i keeping moving around.

2 Replies

Hi Angelskylight, Welcome to the CMT UK Community ! :D

Despite all your problems you sound like the typical positive CMTer which is fab... I always love seeing people saying that they don't cover their AFOs.

Sam x


Thanks i don't care what people think. i never wear trousers live in skirts an dresses an wear tights underneath afos in winter


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