morning energy then fatigue

[Guest guest]

hello -I have more energy for like 1-1 1/2 hours after i get up

in the morning, then i get so tired for the rest of the day.. is this

related to CMT?? am i the only one???

Heidi

[Guest guest]

In a message dated 6/26/2003 9:47:52 AM Pacific Daylight Time,

heidic747@... writes:

> hello -I have more energy for like 1-1 1/2 hours after i get up

> in the morning, then i get so tired for the rest of the day.. is this

> related to CMT?? am i the only one???

>

> Heidi

>

Heidi, I was like this and assumed it was CMT related. It was getting to be

very depressing. My doctor decided to run a thyroid test to see if I was

hypothyroid. Sure enough I was low. I take synthyroid now. It has changed my

life.

So don' t just assume its CMT. It maybe something else that they have medicine

for.

Good Luck

[Guest guest]

Sounds quite familiar, I get so tired so easily and I was a person that was

like the energizer bunny.

in oklahoma

[Guest guest]

Heidi,

When I get up, at first I'm a little stiff, then I take my meds.

And yes, for several hours I have a lot of energy, then it

dwindles as the day goes on.

I believe that sleep gives our bodies rest, so we wake up more

energized. Then as we accomplish things during the day, we

become fatigued. It's just like anyone else who gets tired after

work or activity, except with CMT we may fatigue a lot sooner

since our nerves and muscles aren't working correctly.

I think I remember Gretchen saying that she schedules activities

for the morning because she knows that is her highest energy

time.

On tough days when I have to be active in the evening, I will

try to sneak in a nap in the afternoon.

Hope that helps.

Danita

[Guest guest]

Hi Heidi,

This is the story of my life! My Mom actually figured this out when I

was in Jr. High/Middle school - she was the one who " mentioned " it to my

neurologist, so he was the one to first start a " schedule day plan " for

me. Although at that age I wasn't too keen on it and preferred taking

Ritalin and Potassium. My Mom also figured out that sleep was extremely

important to me - all my CMT symptoms from one night (like spascity for

example) were gone in the morning.

As a CMT kid, when my friends had sleepovers, I went to the party for

awhile, but my parents would not let me stay overnight because I needed

to sleep and not be up all night. Sure this was wierd, but looking back,

it was just something I needed. I never lost any friends because I

missed out on staying up all night either! I had strict bedtimes all the

way through highschool.

Now that I am an adult, sleep is still very important to me and managing

CMT. I need about 9 hours of sleep to have a CMT manageable day. I try

to schedule activities that require physical use of muscles in the

mornings. Whether it is my aquatics, or grocery shopping, or out with

the dogs, the gardebm or a doc's appointment - even last week's

interview was in the morning. I also do my writing better in the

morning.

Now this is wierd, last summer I quit drinking coffee all together. I

thought I needed coffee for more energy. I also quit eating products

with refined sugar in them. I thought I needed sugar for energy. Both

the latter aren't true at all. Now I wake up naturally and sleep much

better.

If I am up too early and if I have a party coming up at night or the

theater, or even if I just feel I need it, I take a nap and meditate for

an hour. It refreshes me and gives me a new day in a way. I don't nap

more than 1 and 1/2 hours, and not beyond 3 pm.

Through the years I have learned to pace myself so all this flows well

now - now sometimes in the summer since it is so light, I like to do

more work in my garden after the sun has gone down - a project usually

reserved for mornings. But I am more careful about things like where I

step, sit, etc., and watch where I have the hose. Nightimes have always

made me think more about where I put my feet and where I walk, etc. Just

because of all this, I certainly don't feel I ever missed out on much.

It took me time to get used to the CMT fatigue issue. I save my

afternoons for things like mail or paperwork or returning phone calls.

My brain still is working fine, if my body isn't at " aquatic " speed.

LOL.

Somewhere I learned this - CMT muscles need to work twice as hard to do

half the work. Think about that. But in my case it has been true. But

pacing, rest, scheduling, all fit and work to make my life with CMT

manageable.

~ Gretchen

[Guest guest]

Hi heidi, I believe it is related to cmt but I'm not an expert

on it either. Sometimes when I wake up even I am tired. And

when I'm tired at the end of the day I can't stay awake no

matter how hard I try. It's not like when other people are a

little tired. Anyway I think alot of others no what your

talking about with the fatigue.

I also have a question for Gretchen or anyone else who may be

able to answer. I was just searching the internet for anything

new about cmt and as you may know I've been having trouble with

my breathing which is probably related to my cmt. I found

something on the web that says Hyperbaric Oxygen Therapy for

the disease Charcot-Marie-Tooth. It also named other things

that it is used for but cmt was one. Does anyone know anything about this

and why they use it for cmt pt.s? And is it for breathing with cmt or

something else? I'm just kinda confused about it. Thanks in

advance!!