Re: Exercise not good for CFS - PAPER

[Guest guest]

Hi. It said that it was good for fibromyalgia, which is often synonymous with

or a componant of CFS. I have been ill since 1989.Became a personal trainer 7

years ago, specializing in special populations. I was completely and totally

disabled for many , many years, as in living in my bed, taking a million

pills, writhing in pain. I don't see where it says that it is not good for CFS.

I

train people with CFS, FM, arthtitis, many diseases and illnesses, even

terminal ones, up until people have even died. While I train people, many times,

I am

rehabing myself. Stretching, light weights, and very light aerobic activity

make people with this illness feel better. It has to be done very, very

gradually, and is a very tricky thing. You backslide, sometimes and have to

start

over. Without stretching many times a day as I do, and working out with light

weights, and doing light aerobic activity, I would not feel free of the FM

tearing , burning pain, and stiffness. I do accupressure on people's necks as

they

lift weights in the beginning to prevent their necks from getting worse, and to

teach them to relax them. Working out in the water is also another great

thing I do with people. Under the care of a certified personal trainer, who has

this illness, working out is beneficial, and empowering. With most illnesses,

even terminal ones, I have watched people feel in control , less stiff; and

just plain feel better. Each person is different and has to be watched and

instructed the entire workout. I read an article in a magazine by another woman

trainer like me who also has our illness and was as sick as I was too.

I still take all my meds and supplements of course. All I want to say is that

I have trained many people with FM, CFS, Lyme, MS, and even Parkinsons, and

it only helped, and did not harm anyone. It has been very interesting to watch

how sometimes a person's muscle will " refuse to contract " when they are very

sick.

[Guest guest]

Indeed, exercise in not good for CFIDS/ME persons. I just came back from a 4 day

trip and since late Saturday night I've been Sooo exhausted, sleeping and just

plain washed out-still. I still am not able to get myself going to get to a dr's

this p.m.-but yes, the trip was very worth it.

natasha-wv

Exercise not good for CFS - PAPER

THis is just an overview of many diseases but it is nice to see a

researcher state that exercise is not reccomended for CFS - nor

indeed for a number i immune related diseases.

Dan Med Bull. 2005 May;52(2):90-4. Related Articles, Links

Physical activity for secondary prevention of disease - systematic

reviews of randomised clinical trials.

Karmisholt K, Gotzsche PC.

Nordic Cochrane Centre, H:S Rigshospitalet, DK-2100 Kobenhavn O.

pcg@...<mailto:pcg@...>.

BACKGROUND: Physical activity is recommended for secondary

prevention of several diseases but it is not always clear how

reliable the evidence is. METHODS: We searched MEDLINE and The

Cochrane Library for systematic reviews of randomised clinical

trials published 1998-2004. RESULTS: We identified 30 eligible

systematic reviews and excluded 13 that contained trials covered in

larger reviews or were older than other reviews on the same subject.

Physical activity decreased all-cause mortality in patients with

coronary heart disease, odds ratio 0.73 (95% confidence interval

0.54 to 0.98), increased maximum walking time in patients with

intermittent claudication by 6.5 min (4.4 to 8.7), and decreased

pain in patients with osteoarthritis of the knee, standardised mean

difference 0.34 (0.24 to 0.44). There were positive effects also in

heart failure, chronic obstructive lung disease, type 2 diabetes and

fibromyalgia, but they need confirmation in high-quality trials.

Exercise improved quality of life in several conditions and

generally led to improved physical performance. An effect was not

shown in stroke, asthma, rheumatoid arthritis, acute or chronic low

back pain, chronic fatigue syndrome, depression, cystic fibrosis or

HIV/AIDS. The occurrence of harms was generally not reported.

CONCLUSION: Physical activity can have important, and even life-

saving, effects as secondary prevention of disease, but more and

better trials are needed to fully assess its benefits and harms, in

particular trials that compare exercise with drugs.

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]

You are not informed. FM and CFS can be seperate entities or can be together.

some people get CFS first, then FM. OR CFS, then nothing. Some people get FM,

then nothing, or FM, then CFS. Some people get both together from day one.

You are lucky to only have one of them.

[Guest guest]

In addition.. after 10 years, many of us, who have access to soophisticated

testing findout we have immune defficiency. Others find that out, after getting

cancer. Many end up with Add or ADHD children, or even autistic children. I

have seen it so many times. The question is why?

[Guest guest]

It is made better by exercise. But it must be done under a program that is

totally and carefully monitored by a qualified professional, preferrably,

someone who has it. Honestly, another personal trainer who did not have it, took

me

under her wing, and she rehabbed me, and taught me how to rehab myself. She

is the only trainer who does not have it that I could honestly say understood

the illness. She actually noticed I was sick, and helped me without charging

me, many years ago. It is very tricky; there is back sliding, but overall the

end result is increased energy, decreased pain, increased flexibility,

decreased stiffness, less need for certain medications. Every session is

different,

and some sessions even end in 15 minutes, if I see nothing can be productive.

But, stretching, rhythmic stretching, water aerobics, lower abdominal work,

pelvic tilts, leg lifts, calve raises, even arm work just using isometrics;

teaching those muscles to contract again so they don't atrophy make a huge

difference. Moving in the water loosens a person up so much. With the right

trainer,

exercise is ONLY beneficial. Please do not be discouraged. You have to know

when to stop. When you start to feel cold, STOP. When your eyes start to feel

like they are burning STOP. WHen your neck tightens up... accupressure till we

loosen it up, then continue. A first workout could be only 10 minutes. Maybe

I should do a video about this to help everyone. My clients have money and

can afford to pay me per session, and a masseuse as well. A video would really

help. They actually offer trqainers certifications in trainign people with

tour illness, but I don't believe hardly anyone can understand it, unless they

have it. I have trained a woman psychiatrist who has it and was totally

disabled. She went back to work eventually and trains herself now. I trained a

woman

psychologist who has it.. she works a little here and there, and works out on

her own a half hour 2x a week, whatever wshe can do. I train a 32 yr old male

lawyer who has it and 2 autistic babies, who is always as stiff as a board...

he can't do much but we stretch a lot and do one set per machine to prevent

muscle atrophy. I train a 70 yr old woman with it in the pool. She does it 1x a

week w/me, 1x a week herself. I trained the wife of an MD who has it, and she

dropped out, preferring to take valium and fioricet instead. she onl;y came 3

times and I couldn't get her to continue. That is a waste.

[Guest guest]

I think there is some kind of trade-off possible.

In the past, when the opportunity was there, I used to dance, briefly, less than

1/2 hr.every sunday. I would be wiped out for 24 hrs. But each Sunday I could

dance longer and harder than the Sunday before.

When the opportunity passed, I deteriorated.

Same with gardening; when external circumstances stopped me, my condition

worsened.

I DO NOT believe the cause of my ill health is " de-conditioning, " but, on a

micro scale it IS part of it.

Adrienne

Exercise not good for CFS - PAPER

THis is just an overview of many diseases but it is nice to see a

researcher state that exercise is not reccomended for CFS - nor

indeed for a number i immune related diseases.

Dan Med Bull. 2005 May;52(2):90-4. Related Articles, Links

Physical activity for secondary prevention of disease - systematic

reviews of randomised clinical trials.

Karmisholt K, Gotzsche PC.

Nordic Cochrane Centre, H:S Rigshospitalet, DK-2100 Kobenhavn O.

pcg@...<mailto:pcg@...>.

BACKGROUND: Physical activity is recommended for secondary

prevention of several diseases but it is not always clear how

reliable the evidence is. METHODS: We searched MEDLINE and The

Cochrane Library for systematic reviews of randomised clinical

trials published 1998-2004. RESULTS: We identified 30 eligible

systematic reviews and excluded 13 that contained trials covered in

larger reviews or were older than other reviews on the same subject.

Physical activity decreased all-cause mortality in patients with

coronary heart disease, odds ratio 0.73 (95% confidence interval

0.54 to 0.98), increased maximum walking time in patients with

intermittent claudication by 6.5 min (4.4 to 8.7), and decreased

pain in patients with osteoarthritis of the knee, standardised mean

difference 0.34 (0.24 to 0.44). There were positive effects also in

heart failure, chronic obstructive lung disease, type 2 diabetes and

fibromyalgia, but they need confirmation in high-quality trials.

Exercise improved quality of life in several conditions and

generally led to improved physical performance. An effect was not

shown in stroke, asthma, rheumatoid arthritis, acute or chronic low

back pain, chronic fatigue syndrome, depression, cystic fibrosis or

HIV/AIDS. The occurrence of harms was generally not reported.

CONCLUSION: Physical activity can have important, and even life-

saving, effects as secondary prevention of disease, but more and

better trials are needed to fully assess its benefits and harms, in

particular trials that compare exercise with drugs.

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]

I don't see how perople even put FM and CFS in the same category. Everything I

ever see shows them to be different. Over the years I have gotten to the point

where I basically delete anything that relates to FM because none of it applies

to me.

Doris

[Guest guest]

I was one that got cfs first, then FM added about 10yrs later and then made

worse even some years later by a carwreck. So the info on FM that says its made

better by exercise won't work for me cause I had cfs first and must be very

careful with exercise/activity. Yes, as usual, we are all different, sigh......

no wonder docs have such a hard time in their cookie cutter medicine system.

Marcia

Re: Exercise not good for CFS - PAPER

You are not informed. FM and CFS can be seperate entities or can be together.

some people get CFS first, then FM. OR CFS, then nothing. Some people get FM,

then nothing, or FM, then CFS. Some people get both together from day one.

You are lucky to only have one of them.

[Guest guest]

Not clear what you are saying. At the time you were living in bed were you

exercising? If not, why not? Did exercising get you out of the bed?

Should people who can't, say, stand upright long enough to fix a cup of tea

exercise?

Thanks,

Adrienne

Re: Exercise not good for CFS - PAPER

Hi. It said that it was good for fibromyalgia, which is often synonymous with

or a componant of CFS. I have been ill since 1989.Became a personal trainer 7

years ago, specializing in special populations. I was completely and totally

disabled for many , many years, as in living in my bed, taking a million

pills, writhing in pain. I don't see where it says that it is not good for

CFS. I

train people with CFS, FM, arthtitis, many diseases and illnesses, even

terminal ones, up until people have even died. While I train people, many

times, I am

rehabing myself. Stretching, light weights, and very light aerobic activity

make people with this illness feel better. It has to be done very, very

gradually, and is a very tricky thing. You backslide, sometimes and have to

start

over. Without stretching many times a day as I do, and working out with light

weights, and doing light aerobic activity, I would not feel free of the FM

tearing , burning pain, and stiffness. I do accupressure on people's necks as

they

lift weights in the beginning to prevent their necks from getting worse, and

to

teach them to relax them. Working out in the water is also another great

thing I do with people. Under the care of a certified personal trainer, who

has

this illness, working out is beneficial, and empowering. With most illnesses,

even terminal ones, I have watched people feel in control , less stiff; and

just plain feel better. Each person is different and has to be watched and

instructed the entire workout. I read an article in a magazine by another

woman

trainer like me who also has our illness and was as sick as I was too.

I still take all my meds and supplements of course. All I want to say is that

I have trained many people with FM, CFS, Lyme, MS, and even Parkinsons, and

it only helped, and did not harm anyone. It has been very interesting to

watch

how sometimes a person's muscle will " refuse to contract " when they are very

sick.

[Guest guest]

Always who has " it: " this disease that you think is only one thing?

We don't have " it! "

Adrienne

Re: Exercise not good for CFS - PAPER

It is made better by exercise. But it must be done under a program that is

totally and carefully monitored by a qualified professional, preferrably,

someone who has it. Honestly, another personal trainer who did not have it,

took me

under her wing, and she rehabbed me, and taught me how to rehab myself. She

is the only trainer who does not have it that I could honestly say understood

the illness. She actually noticed I was sick, and helped me without charging

me, many years ago. It is very tricky; there is back sliding, but overall the

end result is increased energy, decreased pain, increased flexibility,

decreased stiffness, less need for certain medications. Every session is

different,

and some sessions even end in 15 minutes, if I see nothing can be productive.

But, stretching, rhythmic stretching, water aerobics, lower abdominal work,

pelvic tilts, leg lifts, calve raises, even arm work just using isometrics;

teaching those muscles to contract again so they don't atrophy make a huge

difference. Moving in the water loosens a person up so much. With the right

trainer,

exercise is ONLY beneficial. Please do not be discouraged. You have to know

when to stop. When you start to feel cold, STOP. When your eyes start to feel

like they are burning STOP. WHen your neck tightens up... accupressure till

we

loosen it up, then continue. A first workout could be only 10 minutes. Maybe

I should do a video about this to help everyone. My clients have money and

can afford to pay me per session, and a masseuse as well. A video would really

help. They actually offer trqainers certifications in trainign people with

tour illness, but I don't believe hardly anyone can understand it, unless they

have it. I have trained a woman psychiatrist who has it and was totally

disabled. She went back to work eventually and trains herself now. I trained a

woman

psychologist who has it.. she works a little here and there, and works out on

her own a half hour 2x a week, whatever wshe can do. I train a 32 yr old male

lawyer who has it and 2 autistic babies, who is always as stiff as a

board...

he can't do much but we stretch a lot and do one set per machine to prevent

muscle atrophy. I train a 70 yr old woman with it in the pool. She does it 1x

a

week w/me, 1x a week herself. I trained the wife of an MD who has it, and she

dropped out, preferring to take valium and fioricet instead. she onl;y came 3

times and I couldn't get her to continue. That is a waste.

[Guest guest]

Maybe she didn't have the same " it. " Maybe exercise was not good for her.

Adrienne

I trained the wife of an MD who has it, and she

dropped out, preferring to take valium and fioricet instead. she onl;y came 3

times and I couldn't get her to continue. That is a waste.

[Guest guest]

I agree Adrienne. I don't think it's correct to make a blanket

statement that exercise is not good for all folks with CFS.

Certainly if one's body is saying " I can't exercise, can't do a thing " ,

then one shouldn't do it. But I've had CFIDS for 7 years now, and

there are days I can walk almost a mile, and don't really pay for it,

and then other days when I can barely go downstairs to do

laundry.

There is a fine line when it comes to deconditioning. If my body

is telling me to rest -- of course I'd like to sleep sometimes all

afternoon, but not only would I not be able to sleep at night, my

already lost muscle tone would deteriorate further. So I have

these dumb " rubber band " type exercise bands, and try, at least

once a week to do some upper body exercises, even if it's just for

5 minutes. And that's usually as long as it is!

d.

" Adrienne " <duckblossm@c...> wrote:

> I think there is some kind of trade-off possible.

> In the past, when the opportunity was there, I used to dance,

briefly, less than 1/2 hr.every sunday. I would be wiped out for 24

hrs. But each Sunday I could dance longer and harder than the

Sunday before.

> When the opportunity passed, I deteriorated.

> Same with gardening; when external circumstances stopped

me, my condition worsened.

> I DO NOT believe the cause of my ill health is

" de-conditioning, " but, on a micro scale it IS part of it.

>

> Adrienne

> Exercise not good for CFS -

PAPER

>

>

> THis is just an overview of many diseases but it is nice to

see a

> researcher state that exercise is not reccomended for CFS -

nor

> indeed for a number i immune related diseases.

>

> Dan Med Bull. 2005 May;52(2):90-4. Related Articles, Links

>

>

> Physical activity for secondary prevention of disease -

systematic

> reviews of randomised clinical trials.

>

> Karmisholt K, Gotzsche PC.

>

> Nordic Cochrane Centre, H:S Rigshospitalet, DK-2100

Kobenhavn O.

> pcg@c...<mailto:pcg@c...>.

>

> BACKGROUND: Physical activity is recommended for

secondary

> prevention of several diseases but it is not always clear how

> reliable the evidence is. METHODS: We searched MEDLINE

and The

> Cochrane Library for systematic reviews of randomised

clinical

> trials published 1998-2004. RESULTS: We identified 30

eligible

> systematic reviews and excluded 13 that contained trials

covered in

> larger reviews or were older than other reviews on the same

subject.

> Physical activity decreased all-cause mortality in patients

with

> coronary heart disease, odds ratio 0.73 (95% confidence

interval

> 0.54 to 0.98), increased maximum walking time in patients

with

> intermittent claudication by 6.5 min (4.4 to 8.7), and

decreased

> pain in patients with osteoarthritis of the knee, standardised

mean

> difference 0.34 (0.24 to 0.44). There were positive effects

also in

> heart failure, chronic obstructive lung disease, type 2

diabetes and

> fibromyalgia, but they need confirmation in high-quality trials.

> Exercise improved quality of life in several conditions and

> generally led to improved physical performance. An effect

was not

> shown in stroke, asthma, rheumatoid arthritis, acute or

chronic low

> back pain, chronic fatigue syndrome, depression, cystic

fibrosis or

> HIV/AIDS. The occurrence of harms was generally not

reported.

> CONCLUSION: Physical activity can have important, and

even life-

> saving, effects as secondary prevention of disease, but more

and

> better trials are needed to fully assess its benefits and

harms, in

> particular trials that compare exercise with drugs.

>

>

>

>

>

> 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]

No, she had it. This illness is a very tough thing for anyone to endure. The

feeling of hopelessness is difficult to overcome. For many years I did not

believe there would be any light at the end of the tunnel for me either. Many

people have the feeling that nothing will really help them.

[Guest guest]

At the time I was living in bed, I was in constant pain, throughout my body,

and had constant migraines, sore throats, stuffy nose, etc. FM, active CMV,

active EBV. Got better enough to take care of my kids and do minor household

errands. Joined gym and began light exercise (rehab). Then came divorce and car

accident, resulting in knee surgery, worsening of neck pain and FM. Migraines

20 days a month. Extremely elevated liver enzymes, Raynaud's, allergies, got

the " dropsies " s on one side of my body. Then came the cognitive deficits. Short

term memory problems, expressive ephasia, driving my kids somewhere and

forgeting where I was going and how to even get there. Went to physical therapy

for

2 years. Helped a lot. Did water aerobics at the gym. Progressed to training

myself and doing low impact aerobics. Found out I had no immune system. Went on

IL2 and interferon for 2 yrs. Exercised all the while experiencing the side

effects of nausea and vomiting and hot flashes from it. MD treating me died.

Lost that treatment. Lost my immune system again. Got melanoma insitu. Found Dr

Bihari in NYC. Went on Naltraxone. Have had my own personal trainig business

for the last 7 years.

People who can stand and make a cup of tea can exercise a little. They

can do squats while they make their tea. They can do calve raises. While they

sit and watch TV they can isometrically do bicep curls. They can do shoulder

rolls, foward and back to loosen their neck. They can lay on the floor and do

pelvic tilts, and lower abs. They can do isometric shoulder lateral raises and

military presses. Start with one exercise isometrically. Then add another.

Then work up to 3 sets per exercise, isometrically. The most important thing is

to focus on finding the muscle, and making it contract. I don't understand why

it happens, but, it seems that when we are very ill, that becomes an issue. I

had to take ENADA and a couple of people I trained also took it as well, with

their doctor's permission, and it helped. Starting with stretching and

isometrics is the way to go, even when totally bedridden. Just one set of one

exercise. If you feel up to it, later one, try another one, later. That is.. if

your throat is not hurting or itching, if your eyes are not burning, if you are

not freezing, if your nose is not stuffy, if your fingers and toes are not

turning blue, if you are not getting a full blown migraine. Listen to your body.

Like someone else wrote in a previious post... each time she could do a little

more... Not every time was like that... some times things were much more

diificult, or much easier. I found there was a direct correlation between my

menstrual cycle and my weakness.

[Guest guest]

Hi.. Do you take Magnesium? It acts as a natural muscle relaxer. I used to

take antinflammatories and muscle relaxers for many years, as well as pain

medication. I disocvered that plain old vitmain store brand magnesium works the

same. It took me 3 months to build up a blood level that worked. I have been

taking it for years. I take four of these horse pill caplets on the AM. (500mg

each). In the bneginning I took slow Mag, as recommended by MD, because it was

time released, and a coated tablet, but it was way too expensive. Whenever I

stop taking it for more than a day, my body reminds me. My blood tests always

show that my magnesium is still in the very low range, in spite of taking the

supplements. I understand what you are talking about when you say your muscles

feel contracted. They feel tight and stiff. What I mean by contracting them

working out is having them " do the work " . Putting those muscle fibers through

the full range of motion in both directions, squeezing tightly at the top and

releasing all the way in the other direction. By squeezing tightly when you

contract and hold, as you open and release, you have greater relaxation of the

muscle. In the beginning, you have to work up to achieving this and feeling

better. If you are very sick, you may hurt more at first, and then the feeling

will pass. Then you go for it again, gently. It's tricky when you are very very

sick. I remember when I finally lost that constant feeling of stiffness,

contraction and pain throughout my entire body all the time. I kept expecting it

to

come back. I still get it here and tehre, and depending on the weather, or

stress, or if I travel, or if I do too much, My neck is my weak spot. I do

accupressure on myself and don't even realize I am doing it. Used to get

injections all the time in my neck years ago. It is fine; but when I went to a

neurologist last week, and he did my reflexes, I had practically none up top,

and he

told me my neck was bad and I needed injections. I said no, that I am just

fine. I have l learned body positioning to keep things under control. I do not

sit or stand for any long periods of time. I mostly recline , with my legs out.

I work for myself so that I can sit , stand, lay down, etc. , never taxing any

body part. I don't sit at a desk, or sit on a sofa. I wear really good

sneakers.

[Guest guest]

Even tho I was the one who posted the paper I agree. I am an upper functioning

CFS patient and I've had the terrible relapses that others have had from pushing

it too far but in the state I'm in it is good to stretch regularly and it is

good to walk regularly and I dont do well when I dont do those things.

I can get my muscles to contract - it feels to me like they STAY contracted,

that they are always contracted, that they hardly ever relax. In fact they

have relaxed at times and its a really unusual feeling - to actually feeling

relaxed.

Cattttttt@... wrote:

At the time I was living in bed, I was in constant pain, throughout my body,

and had constant migraines, sore throats, stuffy nose, etc. FM, active CMV,

active EBV. Got better enough to take care of my kids and do minor household

errands. Joined gym and began light exercise (rehab). Then came divorce and car

accident, resulting in knee surgery, worsening of neck pain and FM. Migraines

20 days a month. Extremely elevated liver enzymes, Raynaud's, allergies, got

the " dropsies " s on one side of my body. Then came the cognitive deficits. Short

term memory problems, expressive ephasia, driving my kids somewhere and

forgeting where I was going and how to even get there. Went to physical therapy

for

2 years. Helped a lot. Did water aerobics at the gym. Progressed to training

myself and doing low impact aerobics. Found out I had no immune system. Went on

IL2 and interferon for 2 yrs. Exercised all the while experiencing the side

effects of nausea and vomiting and hot flashes from it. MD treating me died.

Lost that treatment. Lost my immune system again. Got melanoma insitu. Found Dr

Bihari in NYC. Went on Naltraxone. Have had my own personal trainig business

for the last 7 years.

People who can stand and make a cup of tea can exercise a little. They

can do squats while they make their tea. They can do calve raises. While they

sit and watch TV they can isometrically do bicep curls. They can do shoulder

rolls, foward and back to loosen their neck. They can lay on the floor and do

pelvic tilts, and lower abs. They can do isometric shoulder lateral raises and

military presses. Start with one exercise isometrically. Then add another.

Then work up to 3 sets per exercise, isometrically. The most important thing is

to focus on finding the muscle, and making it contract. I don't understand why

it happens, but, it seems that when we are very ill, that becomes an issue. I

had to take ENADA and a couple of people I trained also took it as well, with

their doctor's permission, and it helped. Starting with stretching and

isometrics is the way to go, even when totally bedridden. Just one set of one

exercise. If you feel up to it, later one, try another one, later. That is.. if

your throat is not hurting or itching, if your eyes are not burning, if you are

not freezing, if your nose is not stuffy, if your fingers and toes are not

turning blue, if you are not getting a full blown migraine. Listen to your body.

Like someone else wrote in a previious post... each time she could do a little

more... Not every time was like that... some times things were much more

diificult, or much easier. I found there was a direct correlation between my

menstrual cycle and my weakness.

[Guest guest]

I can get my muscles to contract - it feels to me like they STAY contracted,

that they are always contracted, that they hardly ever relax. In fact they

have relaxed at times and its a really unusual feeling - to actually feeling

relaxed.

THIS is how my body is too! Very tight, muscles pulling, cant' relax, also

very stiff. Rarely when you get some kind of reprieve from it you then realize

how 'tight' you were!

Marcia

Cattttttt@... wrote:

At the time I was living in bed, I was in constant pain, throughout my body,

and had constant migraines, sore throats, stuffy nose, etc. FM, active CMV,

active EBV. Got better enough to take care of my kids and do minor household

errands. Joined gym and began light exercise (rehab). Then came divorce and

car

accident, resulting in knee surgery, worsening of neck pain and FM. Migraines

20 days a month. Extremely elevated liver enzymes, Raynaud's, allergies, got

the " dropsies " s on one side of my body. Then came the cognitive deficits.

Short

term memory problems, expressive ephasia, driving my kids somewhere and

forgeting where I was going and how to even get there. Went to physical

therapy for

2 years. Helped a lot. Did water aerobics at the gym. Progressed to training

myself and doing low impact aerobics. Found out I had no immune system. Went

on

IL2 and interferon for 2 yrs. Exercised all the while experiencing the side

effects of nausea and vomiting and hot flashes from it. MD treating me died.

Lost that treatment. Lost my immune system again. Got melanoma insitu. Found

Dr

Bihari in NYC. Went on Naltraxone. Have had my own personal trainig business

for the last 7 years.

People who can stand and make a cup of tea can exercise a little. They

can do squats while they make their tea. They can do calve raises. While they

sit and watch TV they can isometrically do bicep curls. They can do shoulder

rolls, foward and back to loosen their neck. They can lay on the floor and do

pelvic tilts, and lower abs. They can do isometric shoulder lateral raises and

military presses. Start with one exercise isometrically. Then add another.

Then work up to 3 sets per exercise, isometrically. The most important thing

is

to focus on finding the muscle, and making it contract. I don't understand why

it happens, but, it seems that when we are very ill, that becomes an issue. I

had to take ENADA and a couple of people I trained also took it as well, with

their doctor's permission, and it helped. Starting with stretching and

isometrics is the way to go, even when totally bedridden. Just one set of one

exercise. If you feel up to it, later one, try another one, later. That is..

if

your throat is not hurting or itching, if your eyes are not burning, if you

are

not freezing, if your nose is not stuffy, if your fingers and toes are not

turning blue, if you are not getting a full blown migraine. Listen to your

body.

Like someone else wrote in a previious post... each time she could do a little

more... Not every time was like that... some times things were much more

diificult, or much easier. I found there was a direct correlation between my

menstrual cycle and my weakness.

[Guest guest]

I do take some oral mag and have been getting IV Myers which has mag and had a

couple of IM mag shots. My blood level shows at the top of the normal range

actually. I am pretty active, force myself to be, I have a lot of things I have

to do, animals to take care of, diet needs for diabetic husb, have horses that I

ride when I get the energy, but I notice the muscle 'tightness' when I ride, its

hard to stay 'loose' when your muscles are so stiff. Then i can barely get off

cause I get so stiff while riding and takes me quite awhile to get off, its not

pretty!

Marcia

Re: Exercise not good for CFS - PAPER

Hi.. Do you take Magnesium? It acts as a natural muscle relaxer. I used to

take antinflammatories and muscle relaxers for many years, as well as pain

medication. I disocvered that plain old vitmain store brand magnesium works

the

same. It took me 3 months to build up a blood level that worked. I have been

taking it for years. I take four of these horse pill caplets on the AM. (500mg

each). In the bneginning I took slow Mag, as recommended by MD, because it was

time released, and a coated tablet, but it was way too expensive. Whenever I

stop taking it for more than a day, my body reminds me. My blood tests always

show that my magnesium is still in the very low range, in spite of taking the

supplements. I understand what you are talking about when you say your muscles

feel contracted. They feel tight and stiff. What I mean by contracting them

working out is having them " do the work " . Putting those muscle fibers through

the full range of motion in both directions, squeezing tightly at the top and

releasing all the way in the other direction. By squeezing tightly when you

contract and hold, as you open and release, you have greater relaxation of the

muscle. In the beginning, you have to work up to achieving this and feeling

better. If you are very sick, you may hurt more at first, and then the feeling

will pass. Then you go for it again, gently. It's tricky when you are very

very

sick. I remember when I finally lost that constant feeling of stiffness,

contraction and pain throughout my entire body all the time. I kept expecting

it to

come back. I still get it here and tehre, and depending on the weather, or

stress, or if I travel, or if I do too much, My neck is my weak spot. I do

accupressure on myself and don't even realize I am doing it. Used to get

injections all the time in my neck years ago. It is fine; but when I went to a

neurologist last week, and he did my reflexes, I had practically none up top,

and he

told me my neck was bad and I needed injections. I said no, that I am just

fine. I have l learned body positioning to keep things under control. I do

not

sit or stand for any long periods of time. I mostly recline , with my legs

out.

I work for myself so that I can sit , stand, lay down, etc. , never taxing any

body part. I don't sit at a desk, or sit on a sofa. I wear really good

sneakers.

[Guest guest]

Thanks Rich.. Interesting... So now, My 26 yr old son is getting married. He

was an ADHD kid, who I raised as my project. He was also very bright and now

works for IBM. His future wife's father has fibromyalgia!! They are afraid to

have kids. Who can blame them.

[Guest guest]

Hi, Catttttttt,

I strongly suspect that the reason is inherited genetic variations

in genes that code for enzymes and other proteins that are involved

with making and using glutathione. Such gene variations have

already been found in autistic kids, by S. Jill and

colleagues. I hope this will be studied in CFS as well.

Rich

> In addition.. after 10 years, many of us, who have access to

soophisticated

> testing findout we have immune defficiency. Others find that out,

after getting

> cancer. Many end up with Add or ADHD children, or even autistic

children. I

> have seen it so many times. The question is why?

>

>

>

[Guest guest]

> I strongly suspect that the reason is inherited genetic variations

> in genes that code for enzymes and other proteins that are involved

with making and using glutathione. Such gene variations have already

been found in autistic kids, by S. Jill and

> colleagues. I hope this will be studied in CFS as well.

> Rich

Rich,

If the genetics were immutable and were present as normal " heritable "

variations, but the illness emerged in a rate that transcends

reproduction of recessive traits, then wouldn't the reason for the

increase in illness be whatever induced the expression of those

pre-existing genetic traits?

When one looks at the " life difficulties " of autistics and CFSers, it

seems unlikely that they would be able to breed quickly enough to

create a rapidly expanding generation which inherited these genes.

Prof Ewalds concepts of Evolutionary Biology assert that genetic

traits which create such illnesses have a tendency to be removed from

the gene pool because sufferers have such difficulty surviving.

http://www.pbs.org/kcet/closertotruth/explore/show_05.html

-

[Guest guest]

I dont think anybody's really looked into that. It doesnt get mentioned much.

I think its really significant - at least for me.

Marcia <mgrahn@...> wrote:

I can get my muscles to contract - it feels to me like they STAY contracted,

that they are always contracted, that they hardly ever relax. In fact they

have relaxed at times and its a really unusual feeling - to actually feeling

relaxed.

THIS is how my body is too! Very tight, muscles pulling, cant' relax, also

very stiff. Rarely when you get some kind of reprieve from it you then realize

how 'tight' you were!

Marcia

Cattttttt@... wrote:

At the time I was living in bed, I was in constant pain, throughout my body,

and had constant migraines, sore throats, stuffy nose, etc. FM, active CMV,

active EBV. Got better enough to take care of my kids and do minor household

errands. Joined gym and began light exercise (rehab). Then came divorce and

car

accident, resulting in knee surgery, worsening of neck pain and FM. Migraines

20 days a month. Extremely elevated liver enzymes, Raynaud's, allergies, got

the " dropsies " s on one side of my body. Then came the cognitive deficits.

Short

term memory problems, expressive ephasia, driving my kids somewhere and

forgeting where I was going and how to even get there. Went to physical

therapy for

2 years. Helped a lot. Did water aerobics at the gym. Progressed to training

myself and doing low impact aerobics. Found out I had no immune system. Went

on

IL2 and interferon for 2 yrs. Exercised all the while experiencing the side

effects of nausea and vomiting and hot flashes from it. MD treating me died.

Lost that treatment. Lost my immune system again. Got melanoma insitu. Found

Dr

Bihari in NYC. Went on Naltraxone. Have had my own personal trainig business

for the last 7 years.

People who can stand and make a cup of tea can exercise a little. They

can do squats while they make their tea. They can do calve raises. While they

sit and watch TV they can isometrically do bicep curls. They can do shoulder

rolls, foward and back to loosen their neck. They can lay on the floor and do

pelvic tilts, and lower abs. They can do isometric shoulder lateral raises and

military presses. Start with one exercise isometrically. Then add another.

Then work up to 3 sets per exercise, isometrically. The most important thing

is

to focus on finding the muscle, and making it contract. I don't understand why

it happens, but, it seems that when we are very ill, that becomes an issue. I

had to take ENADA and a couple of people I trained also took it as well, with

their doctor's permission, and it helped. Starting with stretching and

isometrics is the way to go, even when totally bedridden. Just one set of one

exercise. If you feel up to it, later one, try another one, later. That is..

if

your throat is not hurting or itching, if your eyes are not burning, if you

are

not freezing, if your nose is not stuffy, if your fingers and toes are not

turning blue, if you are not getting a full blown migraine. Listen to your

body.

Like someone else wrote in a previious post... each time she could do a little

more... Not every time was like that... some times things were much more

diificult, or much easier. I found there was a direct correlation between my

menstrual cycle and my weakness.

[Guest guest]

Annette,

Did you try what I outlined?

For today, try to just stretch your upper body and lower body.. one upper

body stretch .. one lower body stretch. Raise your arms all the way up ,

above your shoulders, interlace your fingers, palms to the ceiling and stretch..

hold for 15 seconds.

Then release.

Next.. Stand.. Put one heel up on a chair or sofa. Lean forward on

it, slightly bending the other knee. Grab your toe if you can. If you cannot,

just lean forward on your heel and stretch... Repeat with the other leg...

Repeat uppper body stretch again

Repeat leg stretches again.

Can you do this? Is it making you sicker? It should take you

about 3 minutes to do. I will check later tonight when I come back after work.

Let me know how you made out.

Good luck.. Just try...

Carol

[Guest guest]

I'll try magnesium again. Cheney's certainly been reccomending it forever.

I understand what you are talking about when you say your muscles

feel contracted. They feel tight and stiff.

Yes - thats a very good way to put it - tight and stiffl.

What I mean by contracting them

working out is having them " do the work " . Putting those muscle fibers through

the full range of motion in both directions, squeezing tightly at the top and

releasing all the way in the other direction. By squeezing tightly when you

contract and hold, as you open and release, you have greater relaxation of the

muscle.

I agree with this as well. When I exercise they loosen up. I almost always

feel better WHEN I'm exercising. In the post exercise period they tighten up

again. The more I exercise the tighter they get - thats why I have to limit my

exercise. If I exercise too much they will feel really tight and constricted

and hot - they actually feel like they're hot. This peaks after a few days and

then recedes. When I'm in the middle of this process - when they are really

feeling hot and stiff - if I exercise again, it will temporarily relieve it,

they'll loosen up again during the exercise and then tighten up again.

I really wonder what is happening during the post exercise period that is

hampering my ability to exercise. I want to re-iterate that I can exercise just

fine! I can get those muscles going and I feel good while I am exercising but

it is the post exercise period that wipes me out. I can generate the energy but

the aftermath I cant deal with. For me, thats a big key to CFS.

Thats great you were able to get over that. I have exercised (walked) regularly

since I've had CFS and while its gotten better its still there.

In the beginning, you have to work up to achieving this and feeling

better. If you are very sick, you may hurt more at first, and then the feeling

will pass. Then you go for it again, gently. It's tricky when you are very very

sick. I remember when I finally lost that constant feeling of stiffness,

contraction and pain throughout my entire body all the time. I kept expecting it

to

come back. I still get it here and tehre, and depending on the weather, or

stress, or if I travel, or if I do too much, My neck is my weak spot. I do

accupressure on myself and don't even realize I am doing it. Used to get

injections all the time in my neck years ago. It is fine; but when I went to a

neurologist last week, and he did my reflexes, I had practically none up top,

and he

told me my neck was bad and I needed injections. I said no, that I am just

fine. I have l learned body positioning to keep things under control. I do not

sit or stand for any long periods of time. I mostly recline , with my legs out.

I work for myself so that I can sit , stand, lay down, etc. , never taxing any

body part. I don't sit at a desk, or sit on a sofa. I wear really good

sneakers.

[Guest guest]

Hi Cat,

I have a diagnosis of M.E. and exercise (regardless of

what it) is makes me very ill indeed. Maybe it is

people with more M.E. than general CFS who do badly

with exercise?

Exercise intolerance is a hallmark of M.E. (as

desribed by Dr Ramsay).

I've tried many forms of gentle exercise and the not

so gentle. All have the same effect with an increase

in viral symptoms, weakness and muscle problems.

We are all different here and I just wanted to let you

know about this group.

With warmest regards,

Annette

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