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

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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
11 Replies

I also have bad nerves and a tremor which I have had as far back as I can remember which can cause me to get stressed out when trying to do things I.e typing, texting and I have unwanted or unplanned reactions. Anyone else have to deal with this and if so do u take anything for it?

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gunner profile image
gunner
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11 Replies
CMT2012 profile image
CMT2012

Hi gunner!

Are you seeing a neurologist? If not, perhaps you might consider seeing a neurologist. They can help you determine if there might be a drug that will help you with this or you might try a psychologist who specializes in Cognitive Behavior Therapy (CBT). 'Bad nerves' and tremors sometimes have a component of thought associated behavior which can easily be brought under control with CBT. It might even help you to consider both, a neurologist for the physical issues and a CBT-trained psychologist for the thought process.

As far as the problem with sun and/or cold, the only thing I do is stay inside when it's sunny, wear sunglasses and cool, cotton clothing if I have to go out in sunny weather and stay wrapped up and warm when it's cold, layered clothing if I have to go out in the cold. Gloves and extra socks, too!

Hope this helps! Best regards!

gunner profile image
gunner in reply to CMT2012

Hi thanks for your response I have seen a neurologist twice but he didn't seem to interested to be quite honest but said he would be willing to c me again if I needed to. I prob didn't get the chance to explain all the difficulties I have. I have finally got appmnt with orthotics in sept. they goin to give me a m.o.t. To find out what I need.maybe there will b someone there I can talk to. ?? I have always had the bad nerves and shakes and yeah it becomes worse under pressure or if I get embarrassed , I take beta blockers which help but it's not a cure. Thanks for your advice it is helpfully and something to think about for the future ta!

snowmancarnage profile image
snowmancarnage

I actually have tremors in my hands, but only occasionally. It normally happens when I am trying to pay for something and have a job to grab hold of notes in my wallet. Of course I then panic because I cant hold anything properly and drop things.

gunner profile image
gunner in reply to snowmancarnage

Hi I have done shop and what I found is that alot of people get nervous when they r paying for something especially when writing out a cheque and signing this did stop me worrying quite so much about it. I even got up and gave a speech at my brothers wedding and got congrats from all I fealt rather proud of myself as I never done this b4. Hoo rah! ????

John1945 profile image
John1945

Hello Gunner.....

I have had CMT ia since birth, although we did not know it. My father developed into "club" feet due to lack of medical knowledge in the 40's / 70's: I continued until my teenage years, when I developed the standard high arches (pes cavus) symptoms, which were reduced by a bone removal procedure to lower my arches, called a "mid-tarsal resection:

My natural male strength allowed me to work normally until my mid-fifties when the wasting muscles in my lower limbs required me to seek further help: I was the fitted with "toe-to knee" plastic splints (AFO's) which gave me a new lease of life, regain my mobility and balance:

In my sixties my CMT hand problems appeared ! look between your thumb and forefinger, is there a muscle in between ? The classic symptoms displayed fingers clawing/weakness/lack of grip/ lack of find finger dexterity/ typing hitting wrong keys on keyboard: Coins are a nightmare for me, I usually ask the shop assistant to pick out the coins for me:

In the last few years in have noticed a marked change in my body's reaction to heat and cold: My holidays abroad result in me remaining in the shade and next to a fan: At home I wear thermal underwear at the least sign of cold, even in my heated house ? Ask your GP for a referral to a Neurologist:

Best of luck to ypu - Head Up - Tell CMT I am the boss - You won't beat me ! ! ! John

nichola148 profile image
nichola148 in reply to John1945

I took suffer with the cold and being painfully cold at times, I asked my neurologist what could be done about this and his reply was BUY A PAIR OF GLOVES xx

Whiterose profile image
Whiterose

Hi, can I suggest you have your thyroid checked out. Sometimes CMT can mask problems linked to the Thyroid particularly if you feel the cold so much, as I do. No harm in having a simple test. Kind regards.

gunner profile image
gunner in reply to Whiterose

Thats a good shout it makes a bit of sense thank you for replying I'll add it to my list lol

curlyburli profile image
curlyburli

I too have hand tremors. My dad (who I think had cmt) had very bad tremors. My feet are painful when cold and they go grey/blue.

I wear 3 pairs of socks in the winter and they still feel cold.

KarenNic profile image
KarenNic

Hi I suffer terribly from changes in temperature. I find my whole lower legs are permanently ice cold (my new husband doesn't appreciate me trying to warm them up on him lol). I also find that if I get too 'cold' i actually feel like i have the flu and tend to go to bed for a few hours to try and warm up. I've inherited my CMT from my dad and paternal grandmother, and i remember as a child both of them having to deal with 'flu' symptoms on a regular basis. (my gran would have been 100 this year and my dad is in his 70's).

In the warm weather i tend to sweat buckets lol can't win really. Just don't let it beat you.

Karen

hotlipslarry profile image
hotlipslarry

Prayers for u I do too

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