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

Charcot-Marie-Tooth UK

1,684 members667 posts

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?

Written by
gunner profile image
gunner
To view profiles and participate in discussions please or .
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 toCMT2012

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 tosnowmancarnage

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 toJohn1945

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 toWhiterose

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

Not what you're looking for?

You may also like...

I am in late 40s, diagnosed with cmt, but I getting forgetting a lot and loss of concentration. Can anybody tell me the worst to come?

I already have shaking of the hands and problems with my breathing and the doctors and not giving...
TB5598 profile image

We can get through this

Hi there am new to all this , am 31 year old , and am half way through my diagnosis! My mum and...
Kieran85 profile image

CMT and multiple other problems

I have either CMT or a peripheral neuropathy - the neurologist can't seem to make up his mind! He...
Skyman1944 profile image

Blurred periphial vision with CMT....?

Hiya, I have CMT, Type 1a as well as my 3 children, my sister and my dad. Question: have any of you...
Cindyyb profile image

Moderation team

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.