Re: fatigue/long term

[Guest guest]

Hi Lori,

He is tired. He has to work his muscles way more than non CMT people. The key is

keeping active and resting. Too much or too less of either is a big problem.

[Non-text portions of this message have been removed]

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[Guest guest]

HI

I just joined the group and was curious about something similar. My 10 year old

son was just diagnosed with a mild form of CMT. He is constantly complaining

about being tired. Is this a symptom? or is he just complaining. Seems hard to

tell these days.

Lori

[Guest guest]

Hi ,

I don't think sleeping a lot has anything to do with CMT. The CMT fatigue is due

to muscle weakness (at least for me) and the only thing that helps is rest, not

sleep. I don't sleep more than what's normal, 8 hours at night, and no

sleep during the day. Someone who needs naps during the day has a sleep problem

at night. You can ask your husband if he sleeps well during the night, and you

can check for snoring, sleep apnea and other things that cn disturb the sleep.

As for kids with CMT being tired: That is most probable. Offer him rest. When I

was a child (I've had CMT since I was 2) I often watched TV for a couple of

hours after school, and before starting my homework. TV or reading is really

good for CMT fatigue since your body can rest, while your intellect doesn't have

too. 

Beata

[Guest guest]

Hi Lori -

My son was diagnosed at age 9. He is now 15. Fatigue is one of the worst

symptoms for him. Leg cramps/pain and fatigue. We did recently find out that

his B12 levels were low. Have your doctor order the bloodwork. B12 is

essential to the health of your spine and nervous system. It is also overlooked

alot of the time.

He has been taking his B12 for a few months now and his levels have risen to

almost normal. His fatigue has lessened although if he does too much, even the

B12 cannot compensate.

It's really hard as a mom of a CMTer to differentiate between legitimate

complaints and just whining because they want to. More and more though, I have

learned to give him the benefit of the doubt because it is his body and he knows

what he is feeling. I don't have CMT and while I have other health issues I

finally realized that we each have different thresholds of pain and discomfort

and fatigue. The odds are good that your son is really really tired.

Keep me posted if you have the B12 levels checked.

[Guest guest]

Yes, for me, sleep, and I mean " quality sleep " is of utmost importance in order

to fully function in the world. As a child with CMT, my parents set had strict

hours for naps/sleep so that I could keep up with peers in all ways, as a teen

with a full social life, I knew I needed a good 10 hours of sleep to manage both

school and work. in college, I knew I needed sleep, but didn't want to/couldn't.

(Too much stimulus, too much going on, was afraid I'd miss something) As an

adult I finally admitted sleep is of utmost importance to my quality of life

with CMT and got into a good sleep hygiene program. (turn down lighting/soft

lighting at night, quiet activity for an hour (reading, meditating or perhaps an

hour of non-violent programming,) meandering outside with my dog (stargazing and

deep breathing fresh air) then to sleep. Fatigue is not a problem now and hasn't

been for quite awhile.

Gretchen