Fatigue

[Guest guest]

Has fatigue been recognized as a symptom of CMT? I have alway used most of my

energy in the evening hours. It has always worked out better for me that way.

On average, I need 10-12 hoyrs sleep to be able to function " normally "

throughout the day. Otherwise, I am extremely sluggish and sometimes even find

myself dozing off when my children are quiet... which isn't a good thing for a

mother of small children. Does this really stem from CMT? And what can I do to

make myself more alert during the morning and afternoon hours?

[Guest guest]

, I think you should have your thyroid tested. I thought my fatigue

was due to having CMT, so I didn't go to the doctor for a long time. Finally I

went in. I had a low functioning thyroid. That made me tired and sleepy. CMT

makes me tired too but not as tired as I was with the hypothyroid. I can

actually stay awake all day now

[Guest guest]

,

Yes, fatigue is a symptom of CMT. It was explained to me like this once:

With CMT, our muscles have to work twice as hard to do half the work.

That right there really made me more aware of pacing myself.

I get about 8 hours of sleep - then maybe an hour nap during the day.

In college I was a night owl, but once in the career, I was plummeted

into the 7 to 6 slot. As it turns out I am my best in the mornings

anyway, it just took some time to figure out when to do things. Like

physical things (exercise, grocery shopping, etc.) I do early in the

morning. I am also most mentally alert about 9-10 am till noon so I get

to my writing then. From about 1 to 2:30 I am useless, so a nap fits in

well. After that I have another period of mental alertness until about

6-7 pm or so. Depends on what I have going on for the day/deadlines,

etc. By 9pm I am ready for pleasure reading or enjoyable relaxation like

a movie. But by 10 I am mostly ready for dreamland!

Sounds like a short day, but I cram alot into it and have learned to

pace myself and also use my optimum biorythms.

I try to keep a regular schedule of tasks and activities and get my

sleep no matter what. One thing I did about a year and a half ago was

quit drinking coffee. It made me awake more at different hours, and I

thought I needed it to function. Not true. Just kept me wired so I

frantically got things done.

This way I am up with the chickens (lol) and feel I can still accomplish

alot. I also feel calmer all through the day.

~ Gretchen

[Guest guest]

I was on Cylert for fatigue, but I started having shortness of breath.

Now, any kind of stimulants like too much caffeine, the Cylert,

Wellbutrin, anything with stimulant properties causes asthma like

symptoms for me. My dr dx'd me w/ asthma, but I have no problems if I

am avoiding stimulants. The albuterol didn't help.

Any ideas?

Thanks!

Love,

Rhonda in PA

GG wrote:

> Good article on Provigil for Fatigue at

> http://www.cmtworld.org/epublisher/publish/article_68.php

>

>

>

> http://www.cmtworld.org

>

> http://www.neurologychannel.com/charcot/

>

> http://www.aicmt.org

>

>

>

>

>

>

[Guest guest]

Hi there, , I believe fatigue is a problem with us that have CMT.. I

feel it, I have read it, and I sure notice it at the end of my day.. When I have

to really have to lean on a wall or something nearby because my balance is not

there and I'm just standing chatting with people, and want to secrectively have

something to hang onto I sure do feel the effort which results in fatigue at the

end of the day.. Some days of course are better than others.... Take Care...

Elaine

[Guest guest]

In a message dated 2/25/2004 9:18:29 AM Central Standard Time,

elaineangel54@... writes:

> my balance is not there and I'm just standing chatting with people, and

> want to secrectively have something to hang onto I

Elaine,

I know the feeling well. I'm not much to chat, anyway so I avoid those

situations.

in the Land of the Illini

[Guest guest]

Rhonda, I would suggest to avoid the stimulants! They are probably

maikng your heart work too hard. I stay away from medications as

much as possible due to possible side effects. I have generally not

been bothered with fatigue and rarely nap. I have always had a lot

of stamina, possibly because I have been on my own and the only way

things get done is if I do them! In the last two to three years I

have limited my activities because I get shortness of breath if I

exert myself. EMG and NCV tests on the diaphragm and phrenic nerve

revealed a dead nerve and a severely weakened diaphragm muscle. When

the lungs can't deliver the required oxygen required for the

activity, shortness of breath occurs. You might ask your doctor to

check out your phrenic nerve. The albuteral didn't help me, either.

I have coped and adapted all my life. This is just another adaption

that I deal with.

Ruth

[Guest guest]

Thanks, Ruth, for your input on this. I hate not being able to take

stimulants since my fatigue is so severe, but I do like being able to

breathe! I will ask my dr. about the phrenic nerve.

Thanks again!

Love,

Rhonda

[Guest guest]

Spy,

I have been thinking about the fatigue issue. And what I am thinking is for

people who are active (I mean ANYONE, not just those with CMT), fatigue will

happen as a natural product. I mean, that's why we humans sleep.

When I was fatigued mid-afternoon, I had to look at that. What was my morning

like? What activities did I do? What went on at school/work, and so on. Did I

sleep well the night before?

Remember something very important: CMT muscles have to work twice as hard to do

half the work.

Of course muscles would be tired then.

As I have grown older, I have not had the fatigue problems I did when I was

younger. I feel this is from splitting up all I do and varying it all.

Yesterday I was pruning my roses - 40 bushes in all. Now, it would have been

insane to prune all at once. So, this rose pruning project has really been going

on since Dec. 21. But due to rains, I couldn't finish. After I did all but the

last few bushes, I looked at my fruit trees and thought it is time to prune them

too. I had already been in my garden 3 hours at this time. Learning not to

overwork, I simply said (to myself) another day for the trees, after I finish

the roses.

I do not feel weaker as I grow older, quite the opposite. I feel it is important

to keep my brain very active with reading and projects; this has seemed to

disallow weakness and instead energizes me. I also feel the exercise I do has an

important effect on my brain too and contributes to my overall energy.

Gretchen

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[Guest guest]

I have been feeling tired, fatigue and I am low in energy. I tried energy

drinks, did not work.I hardly do any activity or excersising.I am only trying to

keep my full time job, so I rest weekends and all afternoon and I am still

tired. I have been on Gleevec for more than 2 1/2 years. This mean side effect

should be the minimum. I wonder if any one experience the same or may be my CML

cells are coming back. I am not PCRU yet but my last QPCR show a slight increase

.. I will see my doctor in November. I appoligize for sharing my problem with you

all hoping to find answers.

T

dxd 1/2003

CCR 7/03

#764 Zero club

400 mg Gleevec

[Guest guest]

Thank you Kathie. I went and checked my last CBC done in September and my

hemoglobin number was within the range. I called my doctor now and I asked him

to check my liver function in my next test by early November. I let you know

what happened. I am glad to hear you are doing fine and wish you always.

God Bless

T

-------------- Original message --------------

Dear :

Sorry to hear about your tiredness. How long has it been since you have had a

CBC? Could it be that your hemoglobin has tanked? Just a thought.

When mine drops below 10 I feel it and when it drops below 9 I can't make it

through a full day. But this is a chronic problem with me so I take 60,000

units of ProCrit weekly to keep the hemoglobin up and now I feel great. Last

year they tried to rotate me off of ProCrit and on to Arnesp. Although I only

had to have an injection every other week, it didn't work as well as the

ProCrit. Once I returned to ProCrit my counts rebounded and have been fine

since. But I'm lucky because my health care covers all but a modest co-pay.

Hope you find a remedy that works for you.

Kathie in Kentucky

[Guest guest]

>

> I have been feeling tired, fatigue and I am low in energy. I tried

energy drinks, did not work.I hardly do any activity or

excersising.I am only trying to keep my full time job, so I rest

weekends and all afternoon and I am still tired. I have been on

Gleevec for more than 2 1/2 years. This mean side effect should be

the minimum. I wonder if any one experience the same or may be my

CML cells are coming back. I am not PCRU yet but my last QPCR show a

slight increase . I will see my doctor in November. I appoligize for

sharing my problem with you all hoping to find answers.

>

> T

> dxd 1/2003

> CCR 7/03

> #764 Zero club

> 400 mg Gleevec

>

>

[Guest guest]

Hi all

well another day and still Platlets dropping

never had this much trouble with myleran, but then

never had in all these 27 years white count so good.

I am very tired my CBC is as of this Monday. White

4.7K Hemagoblin 115K and Platlets 24K. They intend to

let the platlets go down to 20K, not sure what will

happen after that. I am only on 3 caps a day and

they want to try to get me to 400mils a day. My GP

wants me to see him every week as below 20K is kinda

dangerous so he says. down at the 15K level I guess

there is a danger of a brain bleed. so I wait I feel

good just tired, some bone pain but not bad..

I have been warned that if I get a temp even 1 degree

up to go to the emergency room in the city..triage

two.<?> for blood tests night or day. So I feel

comforted that they are keeping a close eye on it.. So

I asked the wife if I will be excused snow removal

this year... hummmmm cannot repeat what she said...

Hope your all well.. I had my flu shots and they want

every one in my family to do the same...

SkipD

it is only with the heart one see rightly

what is essential is invisible to the eye

--- cinver@... wrote:

> Dear :

>

> Sorry to hear about your tiredness. How long has it

> been since you have had a CBC? Could it be that

> your hemoglobin has tanked? Just a thought.

>

> When mine drops below 10 I feel it and when it

> drops below 9 I can't make it through a full day.

> But this is a chronic problem with me so I take

> 60,000 units of ProCrit weekly to keep the

> hemoglobin up and now I feel great. Last year they

> tried to rotate me off of ProCrit and on to Arnesp.

> Although I only had to have an injection every other

> week, it didn't work as well as the ProCrit. Once I

> returned to ProCrit my counts rebounded and have

> been fine since. But I'm lucky because my health

> care covers all but a modest co-pay.

>

> Hope you find a remedy that works for you.

>

> Kathie in Kentucky

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________

Music Unlimited

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[Guest guest]

Thank you Suzie, and . Your advise is appreciated. This group is

great. It always feel better to have others experience the same and offer their

help and advise. I will call my regular doctor tomorrow and request more blood

test.

Love and piece to you all

T

[ ] Re: Fatigue

>

> I have been feeling tired, fatigue and I am low in energy. I tried

energy drinks, did not work.I hardly do any activity or

excersising.I am only trying to keep my full time job, so I rest

weekends and all afternoon and I am still tired. I have been on

Gleevec for more than 2 1/2 years. This mean side effect should be

the minimum. I wonder if any one experience the same or may be my

CML cells are coming back. I am not PCRU yet but my last QPCR show a

slight increase . I will see my doctor in November. I appoligize for

sharing my problem with you all hoping to find answers.

>

> T

> dxd 1/2003

> CCR 7/03

> #764 Zero club

> 400 mg Gleevec

>

>

[Guest guest]

whenever I've been off of it for more than 10 days. Conversely, when I've

been on it for a 6 weeks or more I find myself needing more and more sleep

Warm wishes,

R

Hi Mr.

If I understand , you are going on and off of IM .

It's far from the opinion of my doc . I would like to have more information

about the way you're taking IM .

Thank's .... Have a nice day .

Emile

# 528 Zavie's Club

[Guest guest]

Hi ,

Sorry for your fatigue. You do not need to apologize for sharing

your fatigue problem with us as this is what this group is all about.

I haven't read all the responses yet, and I bet they are all good

and helpful. I was just wondering if you know what your Hgb level

is. Perhaps that might help you understand some of the reason for

fatigue. Although, fatigue is not alwasy associated to low Hgb

while on Gleevec, it is something that can be managed with procrit

and you might find it helps a bit.

That being said, I cannot say enough good things about excercise and

the ability to reduce the feeling of fatigue. I do lots of

Yoga/Pilates, and walking. I find when I am at work, when I get a

case of the " sleepies " usually in the afternoon it isn't easy to go

somewhere and take a snooze. so I get up and talk a long walk

around the office and drink lots of water. The fatigue usually goes

away.

That being said, I will tell you a funny story. Yesterday at the

end of my Yoga/Pilates class while doing the relaxation part, I

actually dozed off! I wasn't alone either, the person next to me

actually started to snore - I think I scored an " A " on relaxation!

Cheers and all the best,

Cheryl-Anne

>

> I have been feeling tired, fatigue and I am low in energy. I tried

energy drinks, did not work.I hardly do any activity or

excersising.I am only trying to keep my full time job, so I rest

weekends and all afternoon and I am still tired. I have been on

Gleevec for more than 2 1/2 years. This mean side effect should be

the minimum. I wonder if any one experience the same or may be my

CML cells are coming back. I am not PCRU yet but my last QPCR show a

slight increase . I will see my doctor in November. I appoligize for

sharing my problem with you all hoping to find answers.

>

> T

> dxd 1/2003

> CCR 7/03

> #764 Zero club

> 400 mg Gleevec

>

>

[Guest guest]

Hi , check out the shortness of breath with your doctor, do not let it get

out of control. It may be a side effect of Sprycel, mine did not catch up with

me for 2 1/2 years, but then it was very bad. Tightness in chest, shortness of

breath, pain in the right side of the chest, as that is where the fluid built

up, in the right lung. Have it checked out, bobby

Fiol <rachel_art_design@...> wrote: I'm on Sprycel 2 weeks

now and every-things going well, except I keep experiencing a lot of fatigue on

and off. I also am getting tightness and heaviness around my chest, back, neck

and shoulders. I also experience trouble taking a breath I can only take short

ones. It almost feels like an anxiety attack. It can last for about an hour or

more.

If anyone has every had anything like this I would appreciate some input.

Thanks

Peace, Light & Love

---------------------------------

Never miss a thing. Make your homepage.

[Guest guest]

-

I took it that way too.

Tell your hubby sorry for us. I hope you find some relieve soon. If able,

try the ibuprofen instead of Tylenol though. Your poor Liver doesn't need

that Tylenol.

Hugs and Hope-

35

CML 5/13/05

Gleevec 800 mg until 8/07

Spyrcel 100 mg since 9/07

Wife and mother of 3 (12,9,7)

# 907 in Zavie's Zero Club

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\

000000001)

[Guest guest]

Hi ,

First off... take that bottle of Tylenol and hit your hubby in the head with it!

Feel better now? Oh, and also ask him when his medical diploma was delivered in

the mail?

Musculoskeletal chest pain is a very real thing. The fact is, there are many

things that simply require bed rest, BUT, if you don't breathe deeply enough it

can lead to more serious things.

Take care,

Zazzy

P.S. Take two Tylenol and call me in the morning LOL.

Re: [ ] Fatigue

Hi all,

I have been out of my house all day about 6 hrs. I saw my primary and she sent

me to the ER There they did chest ct, ultrasound of my heart, chest xray, blood

work and they tell me I have (Musculoskeletal chest Pain) that's why I can't

breath... I was also told I have 2 small Pleural Effusions in each lung... I was

told to go home and rest and take Tylenol.

My husband said it's short for it's all in my head.

I am frustrated and scared, but I am going to rest and take Tylenol

Peace, Light & Love

---------------------------------

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[Guest guest]

Hi ,

When I had Plural Effusion my dr ( a lung specialist) told me to do

breathing exercises. All that is is to breathe in real big and breathe out

real hard. I did have fluid drained but he said there was still a little in

there that would go away. And it did.

As far as the Tylenol. I was told not to take it????

Sharon

_____

From: [mailto: ] On Behalf Of Carol

Hanson

Sent: Wednesday, March 26, 2008 8:23 AM

Subject: Re: [ ] Fatigue

Hi ,

First off... take that bottle of Tylenol and hit your hubby in the head with

it! Feel better now? Oh, and also ask him when his medical diploma was

delivered in the mail?

Musculoskeletal chest pain is a very real thing. The fact is, there are many

things that simply require bed rest, BUT, if you don't breathe deeply enough

it can lead to more serious things.

Take care,

Zazzy

P.S. Take two Tylenol and call me in the morning LOL.

Re: [ ] Fatigue

Hi all,

I have been out of my house all day about 6 hrs. I saw my primary and she

sent me to the ER There they did chest ct, ultrasound of my heart, chest

xray, blood work and they tell me I have (Musculoskeletal chest Pain) that's

why I can't breath... I was also told I have 2 small Pleural Effusions in

each lung... I was told to go home and rest and take Tylenol.

My husband said it's short for it's all in my head.

I am frustrated and scared, but I am going to rest and take Tylenol

Peace, Light & Love

---------------------------------

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

It wasn't my hubby who was acting like an ass it was the doctor who was treating

me like a head case.

Carol Hanson <chanson@...> wrote: Hi ,

First off... take that bottle of Tylenol and hit your hubby in the head with it!

Feel better now? Oh, and also ask him when his medical diploma was delivered in

the mail?

Musculoskeletal chest pain is a very real thing. The fact is, there are many

things that simply require bed rest, BUT, if you don't breathe deeply enough it

can lead to more serious things.

Take care,

Zazzy

P.S. Take two Tylenol and call me in the morning LOL.

Re: [ ] Fatigue

Hi all,

I have been out of my house all day about 6 hrs. I saw my primary and she sent

me to the ER There they did chest ct, ultrasound of my heart, chest xray, blood

work and they tell me I have (Musculoskeletal chest Pain) that's why I can't

breath... I was also told I have 2 small Pleural Effusions in each lung... I was

told to go home and rest and take Tylenol.

My husband said it's short for it's all in my head.

I am frustrated and scared, but I am going to rest and take Tylenol

Peace, Light & Love

---------------------------------

Looking for last minute shopping deals? Find them fast with Search.