Fatigue

[Guest guest]

Jenna,

I agree with Sylvia. No solution I can offer is foolproof. Sylvia's

suggestion to " make time to rest " is a good one. In my book, that means

saying " no " more often. No child needs constant, planned activities. I know

it's tough to fight that battle because our society is fast-paced. The norm

is to have endless birthday parties, sleepovers, sporting events, school

activities, etc. Since I've been alone for so long, I just say " no " more

often. I can't do it all. The kids are in no way deprived. In fact, I think

they need some down time, too.

I know you've said that you need your job. So, I'll suggest the following

sites that could one day soon allow you to quit:

www.freelotto.com

www.iwin.com

www.iwon.com

www.luckysurf.com

If you need more gambling sites, please ask me or Esther and Carol.

Hope you are feeling good today,

----- Original Message -----

From: <booper51@...>

< egroups>

Sent: Monday, September 25, 2000 11:38 AM

Subject: [ ] Fatigue

> Jenna,

> I can't offer some fool-proof suggestions for fatigue, except rest

> when you can and make the time to rest. Sounds easier said than

> done, I know. Can someone else help you with all this running

> around? and then, then, then... couldn't the parents of your

> children's friends help with dropping off and picking up the kids?

>

> When my daughter was little, the parents took turns picking up and

> dropping off kids when others were either busy or not feeling well.

> What happened to that kind commaraderie (sp?)? Are today's working

> Mom's not like that these days?

> Hope you are able to catch up on some much needed rest this week.

> Take better care of yourself.

> Regards,

> Sylvia

[Guest guest]

LOL................on your suggestions for Jenna to maybe one day

be able to quit.......heheheheee

~Esther & Carol~

''To get out of a difficulty, one

usually must go through it.''

" Never look down on anybody

unless you are helping them up. "

----- Original Message -----

From: Matsumura <Matsumura_Clan@...>

< egroups>

Sent: Monday, September 25, 2000 1:10 PM

Subject: Re: [ ] Fatigue

>

> Jenna,

>

> I agree with Sylvia. No solution I can offer is foolproof. Sylvia's

> suggestion to " make time to rest " is a good one. In my book, that means

> saying " no " more often. No child needs constant, planned activities. I

know

> it's tough to fight that battle because our society is fast-paced. The

norm

> is to have endless birthday parties, sleepovers, sporting events, school

> activities, etc. Since I've been alone for so long, I just say " no " more

> often. I can't do it all. The kids are in no way deprived. In fact, I

think

> they need some down time, too.

>

> I know you've said that you need your job. So, I'll suggest the following

> sites that could one day soon allow you to quit:

>

> www.freelotto.com

> www.iwin.com

> www.iwon.com

> www.luckysurf.com

>

> If you need more gambling sites, please ask me or Esther and Carol.

>

> Hope you are feeling good today,

>

>

>

>

> ----- Original Message -----

> From: <booper51@...>

> < egroups>

> Sent: Monday, September 25, 2000 11:38 AM

> Subject: [ ] Fatigue

>

>

> > Jenna,

> > I can't offer some fool-proof suggestions for fatigue, except rest

> > when you can and make the time to rest. Sounds easier said than

> > done, I know. Can someone else help you with all this running

> > around? and then, then, then... couldn't the parents of your

> > children's friends help with dropping off and picking up the kids?

> >

> > When my daughter was little, the parents took turns picking up and

> > dropping off kids when others were either busy or not feeling well.

> > What happened to that kind commaraderie (sp?)? Are today's working

> > Mom's not like that these days?

> > Hope you are able to catch up on some much needed rest this week.

> > Take better care of yourself.

> > Regards,

> > Sylvia

>

>

>

>

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

[Guest guest]

LOL . I could use a little of ALL of those!!

Thanks

Jenna

FREE SPIRIT - Starlight Writers Publications

THE GUARDIANS OF GLEDE - SWP Editors Choice Award; SWP Stellar Award;

WordWeaving Award of Excellance

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Homepage: www.geocities.com/jennakayfrancis

________________________________________________________________

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Juno now offers FREE Internet Access!

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[Guest guest]

People are too stressed. In fact tonight was case in point. I had to go

pick up my daughter at school so she could bring home her violin. No

problem. I had plenty of time, I had classical music on,the sun was

shining. I was relaxed. I stopped by the store on the way home to get

some stamps and still got home before she would have gotten home on the

bus.

Well, on Monday's we usually drive another little girl to soccer

practice. Her mother had come over about 1 minute before I got home, and

left because I wasn't there. Never mind that my two sons and husband

were and that they said I was going to be right there and was going to

soccer. The mother said something about, well, if I wasn't going to be

there to take her daughter to soccer, then she'd have to do it. Now mind

you I never called her to tell her that I WASN'T going to soccer.

Anyway, I took my daughter. Saw the mom and told her that if I wasn't

going to go to practice, I would certainly call her beforehand to let her

know. I don't just not show up. But I doubt she will bring her daughter

over again.

I feel sorry for her kids to be honest, because she and her husband put a

lot of stress on them to be perfect. It's starting to show on the

eldest. She is tense beyond words. She goes to an alternative middle

school that is really intense academically. She is always trying to be

perfect, to win points. So much so that even on the soccer field, she

cannot play her own position - she is all over the field. She HAS to get

the ball - if for nothing else then to prove something to her mother and

father who watch. She almost collided with my daughter several times by

running into her - crossing the field.

It's this kind of scheduling and pressure that people put on themselves

and their kids that make it hard for those of us who slough through life.

*g* I mean, I expect my kids to work to their potential, but I'm not

going to come completely unglued if they get a B or a C. As long as I

know they are trying.

Wow, I went off topic there. But getting back to having help - nada. It

seems people only want to help if they think they are going to get

brownie points for it. It all depends on how many people will pat them

on the back. Whatever happened to the unsung hero?

Jenna

FREE SPIRIT - Starlight Writers Publications

THE GUARDIANS OF GLEDE - SWP Editors Choice Award; SWP Stellar Award;

WordWeaving Award of Excellance

THE GREEN PUMPKIN - CrossroadsPub.com; furt Award Nominee

Homepage: www.geocities.com/jennakayfrancis

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Hi Gretchen, Thanks for the reply regarding fatigue.

I am sending a separate copy to you as I cannot get

a message sent to the group. I have posted many and

they come back to me. Hope you get this. I do try to

pace myself. The doctors have harped on this for

years. I got really bad with the fatigue piece

after I had Mono in 1987 and never quite got back

on my feet after that. I have been diagnosed with

Chronic Fatigue for this but I do wonder if that

is the problem at all. Do you know if CMT is a

primary and other things can be secondary to it? I

have been diagnosed with so many things that I am

not sure how to separate it all. Will a diagnosis

of CMT negate a lot of things? Has this been the

experience with others? I have an appt in Jan 04

in CT with a health center recommended by the CMT

Assoc. in Pa . I have not joined yet as I do not

know for sure what I am dealing with although I

really believe I have found the answer in CMT. All

the symptoms fit together too well for it not to

be CM. Thanks for replying to the many questions.

To so many others as well who know more and share

their knowledge.

Helen

The email group is a community of women and men, all ages and stages of

life, who share their experience, strength and hope with each other that they

may exchange ideas and solutions for living more positive lives with Charcot

Marie Tooth Disease. The only requirement for membership is to have CMT or know

someone with CMT. Persons in the early stages of diagnosis are also welcome, as

are medical professionals. is not allied with any sect, denomination,

politics or institution; does not wish to engage in any controversy, neither

endorses or opposes any causes. There are no dues or fees required for

membership or participation in our discussions.

[Guest guest]

Hello Lorna and all ers:

Thank you Lorna for writing this message. You are not alone. I also

have extreme fatigue, as do quite a few people with CMT. I also

sleep 10 or more hours a day and I feel tired the rest of the day as

well.

I am overweight, like a snowman, fat in the middle and 2 skinny arms

and skinny legs. I blame CMT for my overweight. I am wheelchair

bound and unable to do any real fat burning exercises. Besides the

excercise makes me tired. I use all my energy just transfering

myself and daily activities. I also have CAH, Congential Adrenal

Hyperplasia, not mentioned in my previous posts. I have to take

corticol steriods to regulate salt loss. I am not a doc so thats all

I know. The steriods add fluid weight and CAH also causes fatigue.

CMT for me is worse than CAH since I can't walk.

Depression has been a problem for me, over the years. Currently I

have a good outlook on life but I can relate to depression as most

people can. I maintain a positive outlook because science/docs will

improve or cure cmt, my opinion. I struggled with CMT for 31 years I

won't quit now!

Take care

aka Sandman (I like sleeping)

--- In , " Lorna Waterman " <mssassafrass@c...>

wrote:

> I am very slow to connect physical ailments to my CMT so I want to

ask

> y'all about your fatigue issues.

>

> It seems that in order for me to have one good day where I can

complete

> my tasks to my satisfaction, I must spend three or four days at

rest.

> It isn't unusual for me to sleep 12-14 hours per day. Now, I fight

> depression and I am overweight, so this could be attributable to

non-CMT

> related causes.

>

> Lorna

[Guest guest]

I really wanted to respond to this fatigue topic.A few years ago I was so

tired. Just taking a shower I needed recovery time. Just imagine a really worn

out tired person here. My first thought was it was CMT. I kept that thought for

a

long time. Then I went to the doctor. He did blood work and found a low

functioning thyroid. The thyroid meds have changed my life.

So if your really worn out please go to a doctor.

[Guest guest]

, I have had that test. It came back negative. Is there more than

one test? Should I press the issue? I also have hormone imbalances and

cycle abnormalities. I'm on Medicare and I get the worst doctors.

-----Original Message-----

From: MommyToAdam@... [mailto:MommyToAdam@...]

Sent: Tuesday, December 09, 2003 9:19 PM

Subject: Re: Fatigue

I really wanted to respond to this fatigue topic.A few years ago I was

so

tired. Just taking a shower I needed recovery time. Just imagine a

really worn

out tired person here. My first thought was it was CMT. I kept that

thought for a

long time. Then I went to the doctor. He did blood work and found a low

functioning thyroid. The thyroid meds have changed my life.

So if your really worn out please go to a doctor.

[Guest guest]

Fatigue is a big part of CMT that is for sure. So if you have a

low functioning thyroid and CMT you are feeling really bad.

On a scale of 1-10 I felt like a -1. I am not kidding. I was

getting so depressed. I never had a good day. On the thyroid

meds I have great days.

[Guest guest]

Yes, Fatigue is a major player in CMT. As it was explained to me once:

our muscles have to work TWICE as hard to do HALF the work. No wonder

fatigue is a result. With planning ahead and pacing myself, I don't have

much fatigue. I sleep about 8-9 hours at night. If it is less, a nap

mid-day is rejuvenating. I also tell myself nothing is so important that

it has to be done NOW, or on my " self-imposed deadlines " - except work,

but even with that, I make all my deadlines in advance, so no problem

there. Fatigue is not the problem for me it was when I was in school. ~

Gretchen

behave2001@... wrote:

> I am convinced that fatigue is a part

> of CMT.

[Guest guest]

Marie, the Benfotiamine seems to help. I've been back on it for a few days and do feel some better.

,

California

----- Original Message -----

From: Marie Deady

low dose naltrexone

Sent: Monday, June 07, 2004 4:25 PM

Subject: [low dose naltrexone] Fatigue

Does anyone have any remedies for helping MS'ers with fatigue? I don't have too much fatigue except when I consume sugar, so I haven't paid much attention to the post that had to do with fatigue. But my neice's husband has MS and is having a real problem with fatigue. I'd appreciate any help with this.

Thanks

Marie

[Guest guest]

Marie,

Re.Fatigue

Is he taking LDN?

I too found Benfotiamine great for energy:

Also Pycnogenol/Enzogenol/Grapeseed Extract,

& a good range of vit/mineral sups.

Until I had pretty much sorted out inappropiate foods/sensitivities, I frequently used to feel lousy/fatigued without knowing why: Now, since I learned what to avoid (in addition to taking the above), I don`t seem to get to feel that way:

-It`s a very big difference!

Unless these things are straightened out, I believe that there is always a real potential for considerable

improvement that is being ignored!

-I apologize for hammering on about these things, but this approach seems to be so little understood, appreciated or seriously considered!

I know that it can be a significant support in our efforts to be more healthy & happy........

This is not an insignificant subject that can be ignored with impunity.

Again: "Let food be your medicine & let medicine be your food." -Hippocrates

(-Ignoring this doesn`t seem to have worked out so well, does it?!.......)

Unfortunately Docs & Neuros generally seem to be closed minded & completely oblivious to the great potential of this more holistic approach!...............

(Just as they tend to be re. LDN)

So again, It`s up to us to make the effort to properly learn about the subject & then implement what we have learned.

I have never yet heard of anyone who has applied themselves thoroughly in this way, who has then come to the conclusion that it is not worthwhile: -Quite the opposite!

Thanks for your attention,

Be Happy!

Gerald (SPMS)

----- Original Message -----

From: Marie Deady

low dose naltrexone

Sent: Tuesday, June 08, 2004 12:25 AM

Subject: [low dose naltrexone] Fatigue

Does anyone have any remedies for helping MS'ers with fatigue? I don't have too much fatigue except when I consume sugar, so I haven't paid much attention to the post that had to do with fatigue. But my neice's husband has MS and is having a real problem with fatigue. I'd appreciate any help with this.

Thanks

Marie

[Guest guest]

Thanks Gerald for the information. Yes he just started LDN. He is newly diagnosed. So this is all trial and error for him. I thoroughly agree with you on the type of food that you eat and the need to find out your food hypersensitivities. I found out about mine and feel so much better staying away from those foods. I did tell him to get a good nutritionalist/natureopathic doctor. He just started to see one.

I will tell him about the Benfotiamine and the other supplements that you mentioned. I have been hearing a lot about the Benfotiamine on this group and I was going to ask my natureopathic doctor about it when I see him on June 29th. But I am happy to hear that it helps fatigue. I will send your letter to him (he lives in another state). I hope that it will help him.

Hoping that you are staying well.

Marie

----- Original Message -----

From: gerald rollason

low dose naltrexone

Sent: Tuesday, June 08, 2004 12:06 AM

Subject: Re: [low dose naltrexone] Fatigue

Marie,

Re.Fatigue

Is he taking LDN?

I too found Benfotiamine great for energy:

Also Pycnogenol/Enzogenol/Grapeseed Extract,

& a good range of vit/mineral sups.

Until I had pretty much sorted out inappropiate foods/sensitivities, I frequently used to feel lousy/fatigued without knowing why: Now, since I learned what to avoid (in addition to taking the above), I don`t seem to get to feel that way:

-It`s a very big difference!

Unless these things are straightened out, I believe that there is always a real potential for considerable

improvement that is being ignored!

-I apologize for hammering on about these things, but this approach seems to be so little understood, appreciated or seriously considered!

I know that it can be a significant support in our efforts to be more healthy & happy........

This is not an insignificant subject that can be ignored with impunity.

Again: "Let food be your medicine & let medicine be your food." -Hippocrates

(-Ignoring this doesn`t seem to have worked out so well, does it?!.......)

Unfortunately Docs & Neuros generally seem to be closed minded & completely oblivious to the great potential of this more holistic approach!...............

(Just as they tend to be re. LDN)

So again, It`s up to us to make the effort to properly learn about the subject & then implement what we have learned.

I have never yet heard of anyone who has applied themselves thoroughly in this way, who has then come to the conclusion that it is not worthwhile: -Quite the opposite!

Thanks for your attention,

Be Happy!

Gerald (SPMS)

----- Original Message -----

From: Marie Deady

low dose naltrexone

Sent: Tuesday, June 08, 2004 12:25 AM

Subject: [low dose naltrexone] Fatigue

Does anyone have any remedies for helping MS'ers with fatigue? I don't have too much fatigue except when I consume sugar, so I haven't paid much attention to the post that had to do with fatigue. But my neice's husband has MS and is having a real problem with fatigue. I'd appreciate any help with this.

Thanks

Marie

[Guest guest]

Hi

Thank you for the response. I will send the info to him. Hopefully it will help him as much as it has helped you.

Stay healthy

Marie

----- Original Message -----

From:

low dose naltrexone

Sent: Monday, June 07, 2004 8:12 PM

Subject: Re: [low dose naltrexone] Fatigue

Marie, the Benfotiamine seems to help. I've been back on it for a few days and do feel some better.

,

California

----- Original Message -----

From: Marie Deady

low dose naltrexone

Sent: Monday, June 07, 2004 4:25 PM

Subject: [low dose naltrexone] Fatigue

Does anyone have any remedies for helping MS'ers with fatigue? I don't have too much fatigue except when I consume sugar, so I haven't paid much attention to the post that had to do with fatigue. But my neice's husband has MS and is having a real problem with fatigue. I'd appreciate any help with this.

Thanks

Marie

[Guest guest]

I too have been experiencing extreme fatigue but I have been blaming it on the miserable raining and cold weather up here( every day its 50 degrees and wet) right now it's fourty two and grey rainy again real hard to feel up in that case!

Reg.

-------Original Message-------

From: low dose naltrexone

Date: 06/15/04 09:19:17

low dose naltrexone

Subject: [low dose naltrexone] fatigue

has been experiencing severe fatigue for the past 1-1/2 weeks - first time since LDN in September. I want to get her something for this but something that will not react with the LDN. Can anyone post information for me on this before I call the neuro? She is going for a complete checkup with regular MD but can't get in until next week - just to make sure there is nothing else going on. Any info would be appreciated!

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

My fatigue returned after about 4 months on LDN

I take provigal, a non narcotic for narcalepsey. It is a mild form of speed. No shakes, won't keep you awake at night, just kinda perks me up and helps me be more mentally alert. Though I can take 2 pills a day (200 mg each) I rarely do and often don't take any.

but when the fatigue is bad, it is a life saver. I recommend it.

If has MS here is an interesting article as to why we get MS fatigue and why it is different from any other kind of fatigue.

Fatigue

I have never heard of any drug interactions with LDN or anything that prevents it from doing its night time endorphin rush.

Hope this infor helps as I found the fatigue one of the most depressing symptoms of MS for me.

Peace

ZilNever give up, never surrender

[Guest guest]

Hi,

I'm new to this group. Dx with RA 3 yrs ago. Did all the usual drugs.

Humira worked for 6 months, Enbrel for about 8 months. MTX worked

well, but elevated my liver enzymes through the roof. Can only take

7.5 mg/week now injectable. Been on Remicade since August. Started

at 300mg, now at 500mg. Had to leave work in July. Joints look best

this week in past 2 years. Problem is I can't shake the fatigue.

I'm only 38. If I do something " normal " for a couple of hours, I'm

knocked out for 4-5 hours asleep. Can't seem to build up any

stamina. Anyone experienced this problem and licked it? How? Any

suggestions? Short of running down the street naked, I'm ready to

try just about anything.

[Guest guest]

I get the fatigue a lot, I have found all you can do is pace yourself and rest when you need to. Get plenty sleep at night and plan ahead for outings etc so you can take it easy the day before.

hope this helps , Lynne

[Guest guest]

>

>

> Hi,

Problem is I can't shake the fatigue.

> I'm only 38. If I do something " normal " for a couple of hours, I'm

> knocked out for 4-5 hours asleep. Can't seem to build up any

> stamina. Anyone experienced this problem and licked it?

I'm working on this problem myself. Things that help me are

acupuncture, swimming, and a very healthful diet with supplements,

expecially B vitamins. Meditation helps, too. What does your doctor

suggest? I plan to talk to mine when I see her in a few weeks. Last

night I took one less MTX tablet to see if that would help.

Sierra

[Guest guest]

Ginliz,

Please don't run down the street naked... That might cause some

excitement! Ha! Have you tried taking vitamin C?? I take about 3,000mg.

daily and think it helps. My vitamin C has some other stuff in it, too. I

also take a multi vitamin. Do you take fish oil??? Sorry you had to leave

work.

Good luck to you,

Kay

----- Original Message -----

From: " ginliz35 " <ginliz35@...>

<Rheumatoid Arthritis >

Sent: Thursday, November 11, 2004 11:01 PM

Subject: Fatigue

>

>

>

> Hi,

> I'm new to this group. Dx with RA 3 yrs ago. Did all the usual drugs.

> Humira worked for 6 months, Enbrel for about 8 months. MTX worked

> well, but elevated my liver enzymes through the roof. Can only take

> 7.5 mg/week now injectable. Been on Remicade since August. Started

> at 300mg, now at 500mg. Had to leave work in July. Joints look best

> this week in past 2 years. Problem is I can't shake the fatigue.

> I'm only 38. If I do something " normal " for a couple of hours, I'm

> knocked out for 4-5 hours asleep. Can't seem to build up any

> stamina. Anyone experienced this problem and licked it? How? Any

> suggestions? Short of running down the street naked, I'm ready to

> try just about anything.

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

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]

Hi ,

Fatigue is a common side effect, though variable among Gleevec (IM) users.

I am especially aware of it as I cycle on an off IM, and am so energetic

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

and have no tolerance whatever for sleep deprivation.

I find that exercise helps above all (an experience shared by many others on

the drug, but not by everyone), and half-hour afternoon naps do a lot for me

as well. On the days when I'm able to take time to exercise first thing in

the morning and nap at 2:00pm or so, I'm just fine!

Others on the list will no doubt have suggestions as well.

Warm wishes,

R

Dx 10/19/2000 (5 years ago exactly - what an anniversary!)

In PCRU

> Date: Tue, 18 Oct 2005 15:26:23 +0000

> From: mtadros9@...

> Subject: 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

[Guest guest]

Hi all- I am on MTX and as long as I take folic acid faithfully, I am not so wiped out. MTX just does that. I can sleep twelve hours a day and feel 100 years old. Taking it along with viactiv helps. Viactiv is a chewable multi vitamin with calcium. Its really tasty and comes in flavors. Chocolate, strawberry cream, orange cream. Its more like candy. Everyone is different but folate works for me. Yours, Deborah

[Guest guest]

Deborah, What is MTX please?

Ruth

Hi all- I am on MTX and as long as I take folic acid faithfully, I am not so wiped out. MTX just does that. I can sleep twelve hours a day and feel 100 years old. Taking it along with viactiv helps. Viactiv is a chewable multi vitamin with calcium. Its really tasty and comes in flavors. Chocolate, strawberry cream, orange cream. Its more like candy. Everyone is different but folate works for me. Yours, Deborah

[Guest guest]

Metholtexate.