Fatigue

[Guest guest]

Hi,

Yes, this condition in not fun. But I meet people every day having more horrible

conditions like cancer. After have been listening to many sad stories during a

day I almost feel totally well while leaving my work. Even if I am totally

exhausted.

To get so tired is my worst problem. Yes, me and my sons have CMT 1A. The sons

have made a DNA-test which confirmed the diagnoses. I use to say with my special

dialect from the part of Sweden I live in: " This disease don’t kill you but it’s

a little boooring " .'

Now I will take my C-vit. which I hope will help me both with my CMT-related

problems as well as the infections I so easily get. And who knows, maybe I will

be less tired of this vit.? I think I will choose to believe that anyway!

To read about people here who are feeling better after have taking C-vit . and

other things give me some hope.

Wish you the best,

Marie

[Guest guest]

Thank you Marie,

You're right. We have to remember other people who have conditions which also

make them weak. Thank you for reminding me.

Dawn

[Guest guest]

Just my 2 cents worth....our neurologist explained to us that fatigue

and exhaustion are definitely a part of CMT because the body is not

working properly, we do not use our energy as efficiently. Either we

try to over-compensate to make our body perform better consciously, or

sometimes our brain kicks into hyperdrive and tries to force things to

work better...the mitochondria become affected and fatigue follows.

[Guest guest]

Candace,

The only thing that helps me with fatigue is rest. I know you said you work,

so I don't know what else you can do. Is there a place you can lay down on your

break, even for just a half hour?

Jen

[Guest guest]

Question about fatique:

I am 32 years old and have known I had CMT but was only recently confirmed. The

issue I am having is exhaustion. I feel as if I am 70 years old instead of 30. I

have been trying everything to feel better. I get the the most tired between

1:00 and 2:00 p.m. It's all I can do to get through work. Is there anything I

can take to help me ? The CMT dr I went to said it is something I just have to

learn to live with. I keep trying to fight the fatique....any info would help.

Thanks,

Candace

[Guest guest]

Candace,

Ask your doc about Modafinil. Show him/her this abstract from last

year about it working on CMT. ~ Gretchen

Am J Hosp Palliat Care. 2006 Oct-Nov;23(5):412-6.

Modafinil reduces fatigue in Charcot-Marie-Tooth disease type 1A: a

case series.

GT, Han JJ, Mayadev A, Weiss MD.

Department of Rehabilitation Medicine, University of Washington

School of Medicine, Seattle, Washington, USA.

Charcot-Marie-Tooth disease, the most common hereditary motor and

sensory neuropathy, is a slowly progressive disorder characterized

by diffuse muscle weakness and prominent distal atrophy that

predominantly involves the intrinsic muscles of the feet and the

peroneal muscles. It results in marked reduction in functional

aerobic capacity during exercise and fatigue is commonly reported.

To date, no pharmacologic treatment has been shown to be effective

for treating fatigue in Charcot-Marie-Tooth. Modafinil is used to

treat the symptoms of fatigue and excessive daytime sleepiness in

narcolepsy. However, fatigue and subsequent excessive daytime

sleepiness secondary to fatigue are common symptoms in many

neurologic disorders. Prior reports on patients with myotonic

muscular dystrophy, multiple sclerosis, Parkinson's disease, and

amyotrophic lateral sclerosis, have shown beneficial effects of

modafinil in treating fatigue. We report 4 patients with genetically

confirmed Charcot-Marie-Tooth disease who had significant fatigue

that was almost completely relieved by modafinil.

[Guest guest]

Yes, yes! I find that modafinil, aka Provigil, helps with that debilitating

fatigue, and I haven't noticed any side effects.

Ruth

[Guest guest]

Stephie ~

Honey, worry will kill ya.......

it will make every aspect of your life miserable....

it can give you diarrhea, vomiting, and wrinkles !

I have been diagnosed with everything under the sun, including lupus.....

Dont believe anything you hear......

Implant illness makes you have many things that mimick horrible diagnoses...

Doctors try to call all symptoms " illnesses" so they can drug them and make lots of money....

so, dont believe them, it is a conspiracy...........

I have made many decisions that were wrong because I based my decisions on information made available to me by doctors, drug companies, etc...

dont make the same mistake I have....

Hugs Prayers and Hope ~ DedeSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Well, reading web sites is good, it gives you

education, and food for the brain. What you

would benefit from, is to not let implant illness

define who you are. Separate yourself from

it. You are Stephie, healthy, vibrant, and alive,

you had implants that compromised the body

you exist in. Now you are learning how to

normalize it again. It can be done.

Remember, the body is healing while you are

sleeping, so enjoy your sleeps !

Hugs DedeSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

I was diagnosed with lupus in 1994. Some doctors still say I may or may not have it. I have most all of the symptoms of it, but have always had

a negative ANA. My neurologist says that I am in the 5 percent of people with lupus and a negative ana. I did get a positive DNA and DNA titer for it 2 years ago.

My grandmother had lupus, but my neurologist said he thought that

the silicone triggered the lupus classifying me as having chemically induced lupus. Who knows.

Lupus can take years and years to diagnose. It is a weird disease.

Breast implant disease can mimick lupus and ms and all kinds of things.

Most of all, dont worry about having this.

Rest, detox, time.........all important factors in your road to health.

Even with all my so called diagnoses, I feel when I am explanted I will

regain lots of my health back.

Please, I know you are worried and feel like crap. Please

dont let this get the best of you. Rebel.....they lied to you

and got you to get implants saying they were safe, dont let them

convince you that you have all these diseases. Dont let you

convince you that you do either. Patients, proper diet, and detoxing

will regain your health back......This takes time and patients and diligence.

You will get well again........

Hugs N Hope ~ DedeSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Steph- I wouldn't be too concerned with fatigue right now. More then

likely, you feel fatigued because your body just went through a lot of

trauma. Surgery is very difficult on the body and takes a long time to

recover from it. Right now, I am still sleeping 12 hour nights and

taking cat naps during the day. This is just your our bodies way of

telling us to slow down and sleep! During sleep is when our bodies

heal and recover, so when you are giving your body enough sleep, that

is when it is happy and healing. So, listen to your body when you feel

fatigued and lay down, even if you don't go to sleep, just rest. That

is the best thing you can do for yourself right now. Make sure you are

drinking lots of liquids and eating a well balanced diet too.

I don't know about supplements, but I'm sure some other ladies on here

will have some advice for you.

Love, Krista

--- In , " stephie0580 " <stephie0580@...>

wrote:

>

> Hi, I've also been experiencing fatigue. Are there any supplements or

> something that has helped that anyone knows of? I couldn't find any

> info on it. Thanks!

>

[Guest guest]

I've been resting all day but I really need to stop looking at

medical websites online because it just worries me.

> >

> > Hi, I've also been experiencing fatigue. Are there any

supplements or

> > something that has helped that anyone knows of? I couldn't find

any

> > info on it. Thanks!

> >

>

[Guest guest]

Steph- We are ALL guilty of that (just ask Lynn and :-).) Yes,

stop worrying, it isn't going to do you a bit of good. Just be patient

and give it some time.

~Krista

> > >

> > > Hi, I've also been experiencing fatigue. Are there any

> supplements or

> > > something that has helped that anyone knows of? I couldn't find

> any

> > > info on it. Thanks!

> > >

> >

>

[Guest guest]

I know that i have to stop worrying but I can't help it. I really

didn't know what lupus was and now I'm scared I have it! I don't have

any joint pain so I don't know why I'm making myself worry!

> > > >

> > > > Hi, I've also been experiencing fatigue. Are there any

> > supplements or

> > > > something that has helped that anyone knows of? I couldn't

find

> > any

> > > > info on it. Thanks!

> > > >

> > >

> >

>

[Guest guest]

Dede how do you know if you have lupus. I don't have any joint pain

but lately I've had fatigue and some days pain behind my right eye.

>

> Stephie ~

> Honey, worry will kill ya.......

> it will make every aspect of your life miserable....

> it can give you diarrhea, vomiting, and wrinkles !

> I have been diagnosed with everything under the sun, including

lupus.....

> Dont believe anything you hear......

> Implant illness makes you have many things that mimick horrible

diagnoses...

> Doctors try to call all symptoms " illnesses " so they can drug

them and

> make lots of money....

> so, dont believe them, it is a conspiracy...........

> I have made many decisions that were wrong because I based my

decisions on

> information made available to me by doctors, drug companies, etc...

> dont make the same mistake I have....

> Hugs Prayers and Hope ~ Dede

>

>

>

> ************************************** See what's new at

http://www.aol.com

>

[Guest guest]

What are the symptoms of it? So breast implant disease can actually

mimick lupus but you don't actually have it? I had blood work for CBC

and my sed rate and everything and they both came back normal.

>

> I was diagnosed with lupus in 1994. Some doctors still say I may

or may not

> have it. I have most all of the symptoms of it, but have always

had

> a negative ANA. My neurologist says that I am in the 5 percent of

people

> with lupus and a negative ana. I did get a positive DNA and DNA

titer for it 2

> years ago.

> My grandmother had lupus, but my neurologist said he thought that

> the silicone triggered the lupus classifying me as having

chemically induced

> lupus. Who knows.

> Lupus can take years and years to diagnose. It is a weird

disease.

> Breast implant disease can mimick lupus and ms and all kinds of

things.

> Most of all, dont worry about having this.

> Rest, detox, time.........all important factors in your road to

health.

> Even with all my so called diagnoses, I feel when I am explanted I

will

> regain lots of my health back.

> Please, I know you are worried and feel like crap. Please

> dont let this get the best of you. Rebel.....they lied to you

> and got you to get implants saying they were safe, dont let them

> convince you that you have all these diseases. Dont let you

> convince you that you do either. Patients, proper diet, and

detoxing

> will regain your health back......This takes time and patients and

diligence.

> You will get well again........

> Hugs N Hope ~ Dede

>

>

>

> ************************************** See what's new at

http://www.aol.com

>

[Guest guest]

I thought Lynn and I were the queens of " scary health issue research

on the Internet. " You can join our club if you want... but it is

probably too early after surgery to be concerned with fatigue. I was

so prone to it for about 6 weeks after surgery. There were days when

I would have to go back to bed... I would just crash. I haven't had

that happen in a few weeks now. So... give it time. No supplements

helped with my energy level... time helped.

Take care.

> > >

> > > Hi, I've also been experiencing fatigue. Are there any

> supplements or

> > > something that has helped that anyone knows of? I couldn't find

> any

> > > info on it. Thanks!

> > >

> >

>

[Guest guest]

Don't worry....(easy for me to say... I'm good at worrying). Implants

can do some crazy things to our bodies.

If you really want assurance, you can get the blood tests done. As I

said in another note.. ANA and anti-ds DNA are the two tests that

consider positive markers for Lupus. Maybe you just need some iron.

Would your doctor do the tests if you asked to have them done?

> > > > >

> > > > > Hi, I've also been experiencing fatigue. Are there any

> > > supplements or

> > > > > something that has helped that anyone knows of? I couldn't

> find

> > > any

> > > > > info on it. Thanks!

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I joined that club many months ago too (way before I joined this

forum,) and it didn't do a bit of good. There are just too many

diseases that mimic the same things that are bodies are doing right

now from fighting the implants and then recovering from having the

implants. I gave up on looking up diseases, signs and symptoms a long

time ago.

Steph- My advice (and this is my plan too) is just to give yourself

some time, continue to rest and eat well. Then, in a few weeks, go in

for some lab work, a complete blood test, thyroid, adrenals, the ANA,

RF, etc. Am I missing any everyone? That will ease your mind that you

aren't suffering from some awful disease and then you can continue to

concentrate on healing and detoxing from the toxic monsters.

~Krista

> > > >

> > > > Hi, I've also been experiencing fatigue. Are there any

> > supplements or

> > > > something that has helped that anyone knows of? I couldn't find

> > any

> > > > info on it. Thanks!

> > > >

> > >

> >

>

[Guest guest]

I'm not sure but I suppose I could ask. When I went to my dr's today

she had me to more blood work for CBC and Sed Rate, but that's it. I

guess I should just wait since it's only been a week since I've been

explanted.

> > > > > >

> > > > > > Hi, I've also been experiencing fatigue. Are there any

> > > > supplements or

> > > > > > something that has helped that anyone knows of? I

couldn't

> > find

> > > > any

> > > > > > info on it. Thanks!

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I will give it time and rest, thanks .

> > > >

> > > > Hi, I've also been experiencing fatigue. Are there any

> > supplements or

> > > > something that has helped that anyone knows of? I couldn't

find

> > any

> > > > info on it. Thanks!

> > > >

> > >

> >

>

[Guest guest]

Lynn, and All ~Ya, I think we all have been members of the club....

I tell ya, I was for sure for years and years. I now

love the research and dont believe a word most doctors

say......so, it is weird how your mindthoughts change with

time.

Love DedeSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Stephie,

Implant problems can mimic a host of diseases . . . yet, when tests are done, things just don't square up just right for the diagnoses . . . That's why they used the terms Lupus-like, MS-like, etc. early on . . .

Regardless, you feel just as sick as if you had those illnesses. . . The good news is that, if you give your body what it needs, you're going to get much, much better.

Chances are good you will ALWAYS have to be careful of your health though. The days when you could work all day, party all night and eat and drink whatever you chose are most likely over. . . .In the long run, it will serve you well.

Hugs,

Rogene

[Guest guest]

LOL Stephie,

That sounds like a great idea! . . .

The worst is behind you. . . Time to concentrate on getting better!

Hugs,

Rogene

Re: Fatigue

I've been resting all day but I really need to stop looking at medical websites online because it just worries me.

..

[Guest guest]

Steph,

Try not to research the symptoms. I did the same and I always come up with the VERY worst diagnoses. I don't do it anymore.

Just rest and keep drinking lots of water. It took me several months after explant until the fatigue subsided. Patience it tough - I know, but I can only say is try to be patient.

Hugs, Lynn

Re: Fatigue

I've been resting all day but I really need to stop looking at medical websites online because it just worries me. > >> > Hi, I've also been experiencing fatigue. Are there any supplements or > > something that has helped that anyone knows of? I couldn't find any > > info on it. Thanks!>

>>