Re: Do any of you have this.....

[Guest guest]

Marika, Yes, I know what you are talking about, and think you've done a very

good job of describing it.

I experience it more with my afternoon naps. It sometimes feels like it takes a

couple of hours to get my body moving smoothly again.

O 55 CMT2

Do any of you have this.....

Hello

Its late evening her in Denmark, it won't be that long before I'm going to

bed. My body needs it.

The last 3 days I have been so tired. It comes in periods. I am so tired

that I can't even sleep. It doesn't feels very good. I know it is the

tiredness from CMT.

Most of the day I have had this feeling of my body, that I don't know where

it is.....even I can see it, but I don't feel it very well. If feel that my

left side has the same weigth as a feather......I've learned not to panic

when this happens. It has taken me several years to learn that.

In my head it spins.

When I have gone to bed, my body starts to vibrate, inside of body. Often my

body falls a sleep before my head. It is a strange feeling. I often wake up

in the middle of the night, because my hands hurt very oftens. Often the

pain goes from my fingers to my alboe. I just have to lie down in my bed for

max. 10 minutes before one of my hands are sleeping. It hurts when it wakes

up again.

In the morning, my brain gets up before my body. Normally I have to begin

making exercises in the bed, so my body body wakes up.

Besides all of this I have problem with my stomach. It doesn't work very

well.......(this I will describe another time....:-)....

It would be nice to hear if any of you have the same sympt.....I have read a

thread about " balance in the dark " ....this were very nice to know that I'm

not alone....

Thank you very much for the best forum....

/Marika

[Guest guest]

Marika-

Hello-  I'm am sending healing thoughts your way!  Please do elaberate on the

stomach problems....my husbands primary symptom 10 years ago...way before we had

any idea of CMT was cronic nasuea and vomitting....this is something he has

struggled with his entire life I that he is aware of....)

Kate

________________________________

From: " marikachristensen@... " <marika@...>

Sent: Sun, February 13, 2011 3:19:37 PM

Subject: Do any of you have this.....

 

Hello

Its late evening her in Denmark, it won't be that long before I'm going to bed.

My body needs it.

The last 3 days I have been so tired. It comes in periods. I am so tired that I

can't even sleep. It doesn't feels very good. I know it is the tiredness from

CMT.

Most of the day I have had this feeling of my body, that I don't know where it

is.....even I can see it, but I don't feel it very well. If feel that my left

side has the same weigth as a feather......I've learned not to panic when this

happens. It has taken me several years to learn that.

In my head it spins.

When I have gone to bed, my body starts to vibrate, inside of body. Often my

body falls a sleep before my head. It is a strange feeling. I often wake up in

the middle of the night, because my hands hurt very oftens. Often the pain goes

from my fingers to my alboe. I just have to lie down in my bed for max. 10

minutes before one of my hands are sleeping. It hurts when it wakes up again.

In the morning, my brain gets up before my body. Normally I have to begin making

exercises in the bed, so my body body wakes up.

Besides all of this I have problem with my stomach. It doesn't work very

well.......(this I will describe another time....:-)....

It would be nice to hear if any of you have the same sympt.....I have read a

thread about " balance in the dark " ....this were very nice to know that I'm not

alone....

Thank you very much for the best forum....

/Marika

[Guest guest]

Hi Marika (love your name!). I can relate to many of the things you describe. It

is such a funny group of things that if you go to your doctor and describe it

they look at you a little funny, but if you think about it in terms of the CMT

it starts to make sense.

One thing that seems to be a common thread with most of us is that when you

overdo (work or excercise too much) you feel deep down, center of the bone pain

and fatigue. Sometimes you don't even feel like you've overdone it at the time,

but realize it later when you feel so bad. I have noticed for years that I have

periods of being very much down and other periods of feeling great. I know the

down periods are usually related to overtaxing myself, but not always. I'm

trying to find the " trigger " for the good periods. So far it just seems random.

You may be told that CMT is bilateral -- affects both sides of the body the

same. My experience is that its progression is accelerated by injury. So if

you've had injuries to your left ankle, not the right, the symptoms can be worse

in your left leg and foot.

As to the sleep sensations, I can kind of relate to that. I often startle awake

just as I'm drifting off to sleep with a panicky feeling that I have no idea

where my legs are. Once I wiggle my toes or move a leg, I can tell exactly where

they are and fall asleep. I never mentioned that because it's pretty weird.

Very many, if not most of us have balance issues. It is not unusual to feel

dizzy and even have moments where the room feels like it's tumbling that go away

as fast as they came. I know the feeling passes fast so I usually just grab

ahold of something close by and wait a minute, then I'm fine.

With the hands hurting when you wake up, you may be curling your wrists, causing

carpal tunnel syndrome, or just pinching a nerve at your shoulder from lying on

your side (interestingly the shoulder on the upside usually gets more affected

because of the joint pressing on the nerve. Try sleeping with a small pillow to

keep your arms and wrists in a neutral possition.

Finally, with your stomach trouble. I have noticed that it seems pretty common

in this group to have GERD (gastroesophageal reflux dieseas) and hiatal hernias.

This may just be by chance as these are common in general, but I have wondered

if there is a link. I had surgery to correct my hiatal hernia and cure my GERD.

Whether there's a link or not, doesn't mean that people with CMT aren't just as

likely to have other issues.

I hope that was helpful.

Holli

Tarzana, CA

CMT 1

>

> Hello

>

> Its late evening her in Denmark, it won't be that long before I'm going to

bed. My body needs it.

>

> The last 3 days I have been so tired. It comes in periods. I am so tired that

I can't even sleep. It doesn't feels very good. I know it is the tiredness from

CMT.

>

> Most of the day I have had this feeling of my body, that I don't know where it

is.....even I can see it, but I don't feel it very well. If feel that my left

side has the same weigth as a feather......I've learned not to panic when this

happens. It has taken me several years to learn that.

>

> In my head it spins.

>

> When I have gone to bed, my body starts to vibrate, inside of body. Often my

body falls a sleep before my head. It is a strange feeling. I often wake up in

the middle of the night, because my hands hurt very oftens. Often the pain goes

from my fingers to my alboe. I just have to lie down in my bed for max. 10

minutes before one of my hands are sleeping. It hurts when it wakes up again.

>

> In the morning, my brain gets up before my body. Normally I have to begin

making exercises in the bed, so my body body wakes up.

>

> Besides all of this I have problem with my stomach. It doesn't work very

well.......(this I will describe another time....:-)....

>

>

> It would be nice to hear if any of you have the same sympt.....I have read a

thread about " balance in the dark " ....this were very nice to know that I'm not

alone....

>

> Thank you very much for the best forum....

>

> /Marika

>

[Guest guest]

Hi again

Sometimes I wake up and my body feels normal. But also my afternoon naps can be

exactly the same as the night.

You write that you use a couple of hours to get your body moving again. I have

the same feeling. 3 out of 5 times, the nap has made my body feel like when I am

getting sick in a normal way.

Do you the have the same thing?

Hope you understand my senctence......I write english in a danish way...:-)

/Marika, 40, CMT1b

>

> Marika, Yes, I know what you are talking about, and think you've done a very

good job of describing it.

>

> I experience it more with my afternoon naps. It sometimes feels like it takes

a couple of hours to get my body moving smoothly again.

>

> O 55 CMT2

>

>

> Do any of you have this.....

>

>

>

>

> Hello

>

> Its late evening her in Denmark, it won't be that long before I'm going to

> bed. My body needs it.

>

> The last 3 days I have been so tired. It comes in periods. I am so tired

> that I can't even sleep. It doesn't feels very good. I know it is the

> tiredness from CMT.

>

> Most of the day I have had this feeling of my body, that I don't know where

> it is.....even I can see it, but I don't feel it very well. If feel that my

> left side has the same weigth as a feather......I've learned not to panic

> when this happens. It has taken me several years to learn that.

>

> In my head it spins.

>

> When I have gone to bed, my body starts to vibrate, inside of body. Often my

> body falls a sleep before my head. It is a strange feeling. I often wake up

> in the middle of the night, because my hands hurt very oftens. Often the

> pain goes from my fingers to my alboe. I just have to lie down in my bed for

> max. 10 minutes before one of my hands are sleeping. It hurts when it wakes

> up again.

>

> In the morning, my brain gets up before my body. Normally I have to begin

> making exercises in the bed, so my body body wakes up.

>

> Besides all of this I have problem with my stomach. It doesn't work very

> well.......(this I will describe another time....:-)....

>

> It would be nice to hear if any of you have the same sympt.....I have read a

> thread about " balance in the dark " ....this were very nice to know that I'm

> not alone....

>

> Thank you very much for the best forum....

>

> /Marika

>

>

>

>

>

>

>

>

[Guest guest]

Hi yes i have this, but the feeling of not knowing were my body parts are is

only in my legs;and then only some days. Deb

From: marikachristensen@... <marika@...>

Subject: Do any of you have this.....

Date: Sunday, February 13, 2011, 4:19 PM

 

Hello

Its late evening her in Denmark, it won't be that long before I'm going to bed.

My body needs it.

The last 3 days I have been so tired. It comes in periods. I am so tired that I

can't even sleep. It doesn't feels very good. I know it is the tiredness from

CMT.

Most of the day I have had this feeling of my body, that I don't know where it

is.....even I can see it, but I don't feel it very well. If feel that my left

side has the same weigth as a feather......I've learned not to panic when this

happens. It has taken me several years to learn that.

In my head it spins.

When I have gone to bed, my body starts to vibrate, inside of body. Often my

body falls a sleep before my head. It is a strange feeling. I often wake up in

the middle of the night, because my hands hurt very oftens. Often the pain goes

from my fingers to my alboe. I just have to lie down in my bed for max. 10

minutes before one of my hands are sleeping. It hurts when it wakes up again.

In the morning, my brain gets up before my body. Normally I have to begin making

exercises in the bed, so my body body wakes up.

Besides all of this I have problem with my stomach. It doesn't work very

well.......(this I will describe another time....:-)....

It would be nice to hear if any of you have the same sympt.....I have read a

thread about " balance in the dark " ....this were very nice to know that I'm not

alone....

Thank you very much for the best forum....

/Marika