Exercise

[Guest guest]

it is hard enough to lift my toothbrush, to lift a glass of water to my

lips... if i took chenney's advice and lifted a one or twenty pound weight

for anaerobic exercise i will die of pain and exhaustion. as a matter of

fact, just thinking about it has exhausted me.. must rest...

mayra

[Guest guest]

>it is hard enough to lift my toothbrush, to lift a glass of water to my

>lips... if i took chenney's advice and lifted a one or twenty pound weight

>for anaerobic exercise i will die of pain and exhaustion. as a matter of

>fact, just thinking about it has exhausted me.. must rest...

>

>mayra

Ditto and amen!! Christie

[Guest guest]

Gardening is one possibility- if you get enough under cultivation, you will

find weeding, digging, give a nice mild workout that varies nicely.

We both use a top of the line rowing machine (Concept II) often, and

planning to resume kayaking soon.

Be very aware that your mind may not keep you as safe as before CFS... so

try to keep to activities that do not put you at risk

if brain-fog clouds up, or if you become exhausted. For example, if you are

duck hunting and heading back, slip and have your waders full of water....

if CFS exhaustion is triggered, then you are in a real dangerous

situation!!!

I became very aware of this while working the loader on our tractor... for

the first 4 loads, I was fine; on the fifth load I was getting edgy whenever

I went over a slight bump; on the sixth load, the tractor went into the

ditch and almost tipped over (I have a roll bar on it and use the seat

belts)... This happened twice...

.... so how, I set an alarm on my clock whenever I start using machinery and

stop when it sounds (and before carelessness sets in)

Ken

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

From: Dr. Steve <moores@...>

> When you are starting to feel good what type of exercise is least likely

to lead to relapse

[Guest guest]

I also have a very nice rowing machine, and I like to kyak. What is it about

exercise that cause relapse (I realize we are in the area of conjecture here) is

it heart rate, heat?

I am on both growth hormone and testosterone and I have exercised vigorously all

my life. My muscle strength returns quickly but I do tripod you think that

because rowing puts you in a horizontal

position it is less taxing.

Steve

Lassesen wrote:

> From: " Lassesen " <KenL@...>

>

> Gardening is one possibility- if you get enough under cultivation, you will

> find weeding, digging, give a nice mild workout that varies nicely.

>

> We both use a top of the line rowing machine (Concept II) often, and

> planning to resume kayaking soon.

>

> Be very aware that your mind may not keep you as safe as before CFS... so

> try to keep to activities that do not put you at risk

> if brain-fog clouds up, or if you become exhausted. For example, if you are

> duck hunting and heading back, slip and have your waders full of water....

> if CFS exhaustion is triggered, then you are in a real dangerous

> situation!!!

>

> I became very aware of this while working the loader on our tractor... for

> the first 4 loads, I was fine; on the fifth load I was getting edgy whenever

> I went over a slight bump; on the sixth load, the tractor went into the

> ditch and almost tipped over (I have a roll bar on it and use the seat

> belts)... This happened twice...

> ... so how, I set an alarm on my clock whenever I start using machinery and

> stop when it sounds (and before carelessness sets in)

>

> Ken

>

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

> From: Dr. Steve <moores@...>

> > When you are starting to feel good what type of exercise is least likely

> to lead to relapse

>

> > This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Dr. Cheney's comments are at:

http://www.folkarts.com/idef/exercise.htm

The " balancing act " is governed by the reduced ability of your body to

release O2 and that Mycoplasma hates oxygen....

if you work up to the point of using the amount of O2 that is 'surplus'

then you are fine.... but if you go slightly over it, you have created a

more friendly environment for mycoplasma (just added a spoonful of sugar to

a cup of yeast!)... and the next day, you will feel worst!!!...

Thus it is a very slow gradual build-up of exercise until you feel

poorly the next day...then taking two giant step back and using that as

yoiur limit for a month (before pressing ahead again).

Over the last five years, my wife, Laurie, has gotten worked up to

exercise again... have a good workout and the next day crashes with the flu

or a bug... and hated it... She now understands that it was not flu or a

bug, but CFS, and what needs to happen each day...

Ken

PS: Use http://www.folkarts.com/idef/contents.htm to find pages quickly on

my site ...

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

> From: " Dr. Steve " <moores@...>

>

> What is it about exercise that cause relapse (I realize we are in the area

of conjecture here) is it heart rate, heat?

[Guest guest]

> ... I have never done much swimming or water exercising but it sound like

it might

> good way to exercise.

Floating in a pool uses fewer calories than lying in bed, provided the

water is warm enough, e.g. 80 degrees or more. It is the ideal way to begin

an exercise program because one can start very slowly and begin toning all

the muscles in the body long before the " aerobic " benefits of exercise are

achieved.

Immersion in water reduced average specific gravity drastically. It is

the closest one can get to weightless on earth. Astronauts at one time

trained in water for this reason. The near weightlessness makes swimming

ideal for those with NMH since gravity aggravates pooling of blood in

extremities. In addition, swimming makes exercising easier for those with

low blood volume, often seen in CFS in combination with NMH. The water

increases pressure on the body forcing blood away from the surface of the

body toward the muscles where it is needed for exercise.

The ideal water temperature for a PWC is about 85 degrees. Therapeutic

pools are heated to 90 degrees or higher. Not even an olympic athletic

should swim vigorously in water this warm because of the potential for heat

stroke. A plunge into 80 degree water often feels cold because the water is

18 degrees cooler than the body. For PWCs with slowed metabolic rate or

body temperature that is especially low, water that is too cool may provoke

relapse.

Swimming is not recommended as an exercise for weight loss. To burn

enough calories to loose weight, one must be a competent swimmer and be able

to achieve their target heart rate. Further the swimming muscles must be

developed before one can reach the target heart rate. Because of the near

weightlessness, the target heart rate for swimming is higher than on dry

land.

Various aerobic and stretching exercises can be done in water. Muscles

will stretch more easily and stretch out further in water. I cannot say

enough good things about swimming for PWCs.

Two summers ago I was swimming 2 miles every morning. Every time I

attempted a sprint of 50 meters, I crashed for two days. Due to a major

relapse I stopped swimming last year. Today I am finally returning to

swimming in a pool that is heated to 85 degrees, is enclosed on three sides

by glass, has a roof of glass and overlooks the East River, it is in

Manhattan.

I can hardly wait to put on my bathing suit and take the plunge!

Bonnes

[Guest guest]

Ken--

Good advice. When I'm struggling I don't seem to know it for awhile, though

it's obvious to people around me if they know me at all. Why does judgment

go with the crash? I've always assumed it's insufficient oxygen to the

brain--I'm amazed we all haven't had more car accidents. Any thoughts?

in North Carolina

>

> From: " Lassesen " <KenL@...>

>

>

>

> Be very aware that your mind may not keep you as safe as before

> CFS... so

> try to keep to activities that do not put you at risk

> if brain-fog clouds up, or if you become exhausted.

[Guest guest]

>Good advice. When I'm struggling I don't seem to know it for awhile, though

>it's obvious to people around me if they know me at all. Why does judgment

>go with the crash? I've always assumed it's insufficient oxygen to the

>brain--I'm amazed we all haven't had more car accidents. Any thoughts?

>

> in North Carolina

Dear ,

I've been in 2 fender benders in the past and enough near misses to keep

my heart pounding. Back in Oct. of 1998 when I had to finally quit my job I

lived in constant fear of falling asleep at the wheel and finishing the job!

My judgement is definitely impaired at times like this and I don't remember

to keep a safe following distance. Since then I try not to drive if I am not

well rested and feeling pretty good. I do drop things around the house etc.

but that is far less dangerous to life and limb. Fortunately I'm doing

pretty well at this time.

-Theresa

[Guest guest]

some say between 4:00 & 6:00 pm and avoid doing it before bedtime it can interpt

sleep pattern. Since you are exercising indoors you do not need to worry about

pollen or traffic polution.

Steve

Zazzue wrote:

> From: Zazzue <Zazzue@...>

>

> My son and I are starting to go to the gym. Him, to lift weights, me

> to sit in the steam room. When I feel better, maybe a little

> treadmill. But what I need to know, is, any special time of day

> better than another and when should we eat, before or after exercise?

> I know some of you former jocks can give me advice.

>

> Zazzue

>

> http://www.CreativeAddiction.com

> mailto:Zazzue@...

>

> ---------------------------

[Guest guest]

Hi,

I was a gym fanatic. Then I couldn't execise in the morning, then at night.

Only way I could overcome pain and fatigue of exercising was to mix half

water, half beer, with hefty does of caynene pepper to keep on exercise

bike. This from person who did jazz dance, hip-hop with teens!, now I am

sorry excuse of what I used to be - and I used to look wonderful. This is a

blow to the vainest women in the universe!

Now I'm told that exercise is out with myopathy - I will decide what to do

on my own at this point as docs have been little help; but you all have

been immense help and I thank you so much.

Christie

At 02:41 PM 1/11/00 -0600, you wrote:

>From: " Dr. Steve " <moores@...>

>

>some say between 4:00 & 6:00 pm and avoid doing it before bedtime it can

interpt sleep pattern. Since you are exercising indoors you do not need to

worry about pollen or traffic polution.

>

>Steve

>

>Zazzue wrote:

>

>> From: Zazzue <Zazzue@...>

>>

>> My son and I are starting to go to the gym. Him, to lift weights, me

>> to sit in the steam room. When I feel better, maybe a little

>> treadmill. But what I need to know, is, any special time of day

>> better than another and when should we eat, before or after exercise?

>> I know some of you former jocks can give me advice.

>>

>> Zazzue

>>

>> http://www.CreativeAddiction.com

>> mailto:Zazzue@...

>>

>> ---------------------------

[Guest guest]

Cute. I will have to remember all these excuses the next time the dr wants

me to exercise lol. Thanks

Tina1

>From: " Aisha Elderwyn " <aisha@...>

>Reply-egroups

> " Being Sick Support Group " <egroups>

>Subject: Fw: exercise

>Date: Sat, 8 Jul 2000 11:29:25 +1000

>

>Exercise

>

>It is well documented that for every mile that you jog, you add one minute

>to your life. This enables you at 85 years old to spend an additional 5

>months in a nursing home at $5000 per month.

>

>My grandmother started walking five miles a day when she was 60. She's 97

>now and we don't know where the heck she is.

>

>I joined a health club last year, spent about 400 bucks. Haven't lost a

>pound. Apparently you have to show up.

>

>I have to exercise early in the morning before my brain figures out what

>I'm doing.

>

>I don't exercise at all. If God meant us to touch our toes, he would have

>put them further up on our body.

>

>I like long walks, especially when they are taken by people who annoy me.

>

>I have flabby thighs, but fortunately my stomach covers them.

>

>The advantage of exercise is that you die healthier.

>

>Jogging makes the ice jump right out of my glass

>

>

>

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

ExerciseIt is well documented that for every mile that you jog, you add one minuteto your life. This enables you at 85 years old to spend an additional 5months in a nursing home at $5000 per month.My grandmother started walking five miles a day when she was 60. She's 97now and we don't know where the heck she is.I joined a health club last year, spent about 400 bucks. Haven't lost apound. Apparently you have to show up.I have to exercise early in the morning before my brain figures out whatI'm doing.I don't exercise at all. If God meant us to touch our toes, he would haveput them further up on our body.I like long walks, especially when they are taken by people who annoy me.I have flabby thighs, but fortunately my stomach covers them.The advantage of exercise is that you die healthier.Jogging makes the ice jump right out of my glass

[Guest guest]

loved this one!! ne

>From: " Aisha Elderwyn " <aisha@...>

>Reply-egroups

> " Being Sick Support Group " <egroups>

>Subject: Fw: exercise

>Date: Sat, 8 Jul 2000 11:29:25 +1000

>

>Exercise

>

>It is well documented that for every mile that you jog, you add one minute

>to your life. This enables you at 85 years old to spend an additional 5

>months in a nursing home at $5000 per month.

>

>My grandmother started walking five miles a day when she was 60. She's 97

>now and we don't know where the heck she is.

>

>I joined a health club last year, spent about 400 bucks. Haven't lost a

>pound. Apparently you have to show up.

>

>I have to exercise early in the morning before my brain figures out what

>I'm doing.

>

>I don't exercise at all. If God meant us to touch our toes, he would have

>put them further up on our body.

>

>I like long walks, especially when they are taken by people who annoy me.

>

>I have flabby thighs, but fortunately my stomach covers them.

>

>The advantage of exercise is that you die healthier.

>

>Jogging makes the ice jump right out of my glass

>

>

>

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

>I was interested in finding a exercise tape for Lp's.

>A while back I seen one in LPA Today, the LPA

>newsletter, but haven't seen it in there since.

>If someone could get back to me I would appreciate it.

> Thanks.

Go to LPA Online and click on " Products, " where you will find the

very tape you're looking for.

===========================================================

Dan Kennedy

Internet services coordinator

Little People of America, Inc.

http://www.lpaonline.org

[Guest guest]

Hi Barbara,

Great questions! I'm no doctor here, duh I think everyone knew that sorry:-),

but I have done lots of excercising all my life. One of the best ways to stay

fit for me has been by stretching and dancing. Try yoga, or pilates.

Blanks is also fantastic at that Tae Bo (love that!), and I also love kick

boxing as well(makes me feel powerful!Ha!), I also have a " home gym " , it's the

Total Gym, and I love it!! I wouldn't necessarily recommend it for anyone who

has back problems, but if you are in good health(kind of an oxymoron, if someone

is healthy why do they need excercise, but you get my point), then I say get one

and use it! It works every single muscle in your body, including your mouth,

cause you'll be complaining and grunting the whole time! :-)

But remember to stretch!! Stretching is THE most important thing!

Have fun!

[Guest guest]

From: <SauceyKitty@...>

> But remember to stretch!! Stretching is THE most important thing!

So tell me folks, has ANYONE on the list every managed to STRETCH

effectively? Surgery and bone breaking apart that is:-)))))

Think of the headlines in the papers, " Dwarf tells fellow dwarfs the most

important thing is stretching "

Sorry, couldn't resist:-)

By the way. Lin goes to a gym: has done ever since Orest Hurko (s

Hopkins) told us BOTH to loose THIRTY pounds!!!!! It has done wonders for

her, and apart from helping with the weight loss (along with Weight

Watchers), has done her body the world of good.

BUT, she ONLY uses the exercise beds. I.e. those beds which move, and do

all the work for you. They are extremely safe, and ideal for us. Once I

find a gym which allows men onto those beds, I'll be there like a shot!

Fred, strapped on the rack, and Lin slowly turning the wheel.

[Guest guest]

I've exercised all my life .....specially at the gym.

I've been very successful at circuit training. Little

by little if you're not too intimidated there are

always creative ways to use the machines even for a

short statured person. It just takes a little

experimenting on what feels comfortable. To be honest

almost all of the machines I can't put my feet on the

ground, but I can adjust the seat to a height that

allows me to do what everyone else does......

I just suppport my legs other ways. I also use the

free weights in many combinations, so I can get a

variety of working my muscles......

It's quite funny too.....because I would work out at

this GOLD's GYM near my work......and all you see are

these huge masses of muscle all over the place.......

and then comes little o'l me sitting in the middle

with them pumping iron....it's actually quite

empowering knowing and great for the self esteem.

I've also been very successful with aerobics, step

class and cardio/kick boxing.......The most important

thing about those classes ......is to pace yourself

and listen to your bones.....

You can still get a great workout as long as you don't

over do it....and slow down when you feel too much

fatigue.......

All the exercise has been a major factor why I don't

have problems with my joints and hips. Having

pseudoachondroplasia , those are big problems and many

LP's end up having to have many operations. I've been

very lucky and kept healthy and strong because of my

continued exercise.

Hope that helps

--- Barbara Brullo <tobubba@...> wrote:

<HR>

<html><body>

<tt>

Hi there,<BR>

<BR>

Just wondering if anyone belongs to a gym and if so

what they participate<BR>

in. What equipment do you find beneficial? Do you take

any aerobics classes?<BR>

What about a class like Aerobox (Aerobics/kick

boxing)...is that ok for<BR>

people of our stature? This is a general question, I'm

interested in hearing<BR>

others thoughts on this.<BR>

<BR>

<BR>

Thanks<BR>

<BR>

Barbara <BR>

</tt>

<br>

<!-- |**|begin egp html banner|**| -->

<table border=0 cellspacing=0 cellpadding=2>

<tr bgcolor=#FFFFCC>

<td align=center><font size= " -1 "

color=#003399><b>

[Guest guest]

HI there Barbara!!!

I was taking AQUABICS up until Christmas. I found it to be WONDERFUL!!!! No pain

in the back, knees, legs, or anywhere... and alot of fun at the same time. The

class I took was in the DEEP end of the pool... where we ALL wore

'aqua-float-belts'. So it didn't matter that I was only 4'4 " in the 25 foot end

of our local Olympic-size public pool!!!!

I have also done alot of walking... over the winter here in Ontario the walking

lacks...but now with TWO boys (canine) I am really planning on walking alot this

summer. I actually took them BOTH for their first walk the other day... what a

blast that was!! More of a work-out than I expected.

I hope this helps ya out some...

[Guest guest]

Lee,

Thanks again for the info but as I said before I can't make

exercise a part of my daily routine even though I've tried.

That also includes not being able to do stretches.

I see a therapist for Stress Management and one of the

things that she wanted me to do was to walk 3 times a week

but I can't even do that b/c of my secondary female problem

in addition to having the endometriosis.

Other than that I'm hanging in there.

=====

Kristy

http://www.geocities.com/sokokl/kristyspersonalpage.html

__________________________________________________

[Guest guest]

In a message dated 5/30/01 1:05:40 PM Eastern Daylight Time, fe38@...

writes:

> There are other types of Yoga out there. Some are much more demanding than

> others.

>

I did Kundalini and thought it was wonderful the first time, but after the

3rd time it was too much like trying to work out at gym in that I initially

feel great but then a week later I begin to pay the price and become real

lethargic.

-

[Guest guest]

In a message dated 5/30/01 1:05:40 PM Eastern Daylight Time, fe38@...

writes:

> There are other types of Yoga out there. Some are much more demanding than

> others.

>

I think maybe swimming is good.

[Guest guest]

I can't tolerate much exercise beyond walking either. One thing that a friend

turned me onto was viniyoga. It's wonderful. Not only is it relaxing, but my

body seems to love it. I'm mentally clearer, more relaxed, and my body feels

stronger. One of my favorite books on the topic that has lots of pictures ( if

you can't find a vini yoga instructor) is called Yoga For Your Life. There are

other types of Yoga out there. Some are much more demanding than others.

Emma

exercise

Is there any type of exercise that folks can tolerate better than others.

For example exercise that involves lying down, swimming. About all I can do

is light weight lifting and walking. But I am limited regarding how far I

can walk and I keep my weight lifting down below the lactic acid threshold.

I do stretching exercises almost ever day and a few sit ups. But I was so

active and now I am board sh**less. I like to ride a motor cycle but I

figure if I broke and ankle I would be totally helpless. I thought about

getting a horse but that can be dangerous too. I never have been scuba

diving --- can CFSers do that? Any suggestions?

[Guest guest]

everytime i used to exercise before i had this even if

it was a ten min walk i would alway get sick with

avery long cold has this happen to anyone else?

--- Judith Gilbert <jaegilbert@...> wrote:

>

> hi Steve M. and all -

>

> > Is there any type of exercise that folks can

> tolerate better than

> others.

> > For example exercise that involves lying down,

> swimming. About all I can

> do

> > is light weight lifting and walking. But I am

> limited regarding how far

> I

> > can walk and I keep my weight lifting down below

> the lactic acid

> threshold.

> > I do stretching exercises almost ever day and a

> few sit ups. But I was

> so

> > active and now I am board sh**less.

>

> the fact that you are bored sh**less is a good

> sign!!!! it means you have

> the energy TO be bored!! As to exercise besides

> walking, swimming is pretty

> strenuous unless you are already in pretty good

> shape, but walking through

> waist-high water in a pool will give you a pretty

> good workout. YMCA/YWCA

> usually have acquatic exercise programs that are

> great, and working out in

> water tends to keep your body temperature lower

> thereby lessening symptoms

> you would get from on-land workouts.

>

> Judith

>

>

>

> This list is intended for patients to share personal

> experiences with each other, not to give medical

> advice. If you are interested in any treatment

> discussed here, please consult your doctor.

>

>

[Guest guest]

Hi ,

This may be too tame for you, but have you tried rebounding (jumping on a

mini trampoline)? It's great for PWCs because it helps the autonomic

nervous system as well as helping with detox by pumping the lymphatic

system. Plus, it's fun and rebounders are cheap. One word of caution: if

you are sensitive, you will want to start slow.

Good luck,

> Is there any type of exercise that folks can tolerate better than others.

> For example exercise that involves lying down, swimming. About all I can

do

> is light weight lifting and walking. But I am limited regarding how far I

> can walk and I keep my weight lifting down below the lactic acid

threshold.

> I do stretching exercises almost ever day and a few sit ups. But I was so

> active and now I am board sh**less. I like to ride a motor cycle but I

> figure if I broke and ankle I would be totally helpless. I thought about

> getting a horse but that can be dangerous too. I never have been scuba

> diving --- can CFSers do that? Any suggestions?

[Guest guest]

are you able to do this with being dizzy?

--- <purplesparrow@...> wrote:

> Hi ,

>

> This may be too tame for you, but have you tried

> rebounding (jumping on a

> mini trampoline)? It's great for PWCs because it

> helps the autonomic

> nervous system as well as helping with detox by

> pumping the lymphatic

> system. Plus, it's fun and rebounders are cheap.

> One word of caution: if

> you are sensitive, you will want to start slow.

>

> Good luck,

>

>

>

>

> > Is there any type of exercise that folks can

> tolerate better than others.

> > For example exercise that involves lying down,

> swimming. About all I can

> do

> > is light weight lifting and walking. But I am

> limited regarding how far I

> > can walk and I keep my weight lifting down below

> the lactic acid

> threshold.

> > I do stretching exercises almost ever day and a

> few sit ups. But I was so

> > active and now I am board sh**less. I like to ride

> a motor cycle but I

> > figure if I broke and ankle I would be totally

> helpless. I thought about

> > getting a horse but that can be dangerous too. I

> never have been scuba

> > diving --- can CFSers do that? Any suggestions?

>

>

>

> This list is intended for patients to share personal

> experiences with each other, not to give medical

> advice. If you are interested in any treatment

> discussed here, please consult your doctor.

>

>