Re: Weight gain due to CFS

[Guest guest]

Hi Judy and no offense, but this would be EXTREMELY dangerous for people who

have been diagnosed with CFS/CFIDS which is actually ME, and as we know,

most PWCFS actually do have the ME form. My own last attempt, in remission,

of ½ hr. weight of walking, led to me being totsally bedfidden for 2 years,

and significant disease progression. In PWME exercise leads not only to

relapse and possible permanent degeneration but very possibly shortens the

lifespan as well. For those who KNOW they have non-ME CFS (and who is

that??), and those with non- ME Fibro (who may also have ME but be

misdiagnosed), light exercise can be helpful. Aylwin xox

[Guest guest]

I totally AGREE with Aylwin. I relapsed severly in June 1991 due to aerobic

exercising aned was bedridden for almost another year until I started Kuta

injections. I often wonder if I would be in much better shape NOW if I hadn't

exercised. As I have posted before the ladies in my support group knew that

exercise can do that but didn't tell me. I only wish that someone had told me so

I am telling you now to hopefully prevent a relapse. You can be feeling o.k. one

minute and then wake up and be bedridden again for a very long time and nobody

will believe that exercise can cause a relapse but I would believe you. diane

[Guest guest]

Aylwin ~ I understand. I know how lucky I am to have achieved the degree of

recovery that I have achieved. I think of Akers, the top women's pro

soccer player who lost her career after she collapsed on the field on account of

CFIDS. The last I read she was slowly building her endurance back, but she won't

be able to play professionally again. I know it is hit-and-miss. I know some can

and some can't when it comes to exercise. But what I am saying to you is that if

not for my OWN choice and determination, " I " personally would have not gotten to

where I am today. I was one who had to choose to listen to her own Inner

Guidance above all else. I know how lucky I am. I feel grateful and I feel

apologetic if I sounded judgmental.

Judy

[Guest guest]

So sorry that happened to you too Diane dear. Our whole culture is so

fitness oriented, it’s hard to go against the grain – especially when you

are trying to regain your health and don’t have the proper info <sigh>.

Aylwin xox

_____

From: CFAlliance [mailto:CFAlliance ]

I totally AGREE with Aylwin. I relapsed severly in June 1991 due to aerobic

exercising aned was bedridden for almost another year until I started Kuta

injections. I often wonder if I would be in much better shape NOW if I

hadn't exercised. As I have posted before the ladies in my support group

knew that exercise can do that but didn't tell me.

[Guest guest]

Hi Judith, well I think the secret difference is largely attributable to who

has been diagnosed with CFS/CFIDS that actually have ME and those who do

not. The former should NEVER exercise aerobically beyond a minimal amount (a

few minutes’ walk, a little housework only IF the person is up to it), while

the latter, and those with Fibro, can really benefit from light exercise or

even recover.

What I am, telling you is the difference isn’t determination or even inner

guidance, but which form of the disease(s) you have and at what severity. I

too have oodles of determination and positivity and spiritual life and all

that good stuff, and all that working out ever did for me was cause relapse

and disease progression, and probably shortened my lifespan. It depends on

if you have mitochondrial disease and cardiac insufficiency from ME or not.

It takes a different type of strength and discipline, and patience too, and

acceptance and courage and fortitude, to recognize your limits and live

within them with grace. Aylwin xox

[Guest guest]

>

> Hi Judy and no offense, but this would be EXTREMELY dangerous for

people who

> have been diagnosed with CFS/CFIDS which is actually ME, and as we

know,

> most PWCFS actually do have the ME form. My own last attempt, in

remission,

> of ½ hr. weight of walking, led to me being totsally bedfidden for

2 years,

> and significant disease progression. In PWME exercise leads not

only to

> relapse and possible permanent degeneration but very possibly

shortens the

> lifespan as well. For those who KNOW they have non-ME CFS (and who

is

> that??), and those with non- ME Fibro (who may also have ME but be

> misdiagnosed), light exercise can be helpful. Aylwin xox

>

Yep I have to agree Aylwin,

My last exercise attempt of about 9 days (with the occaisional day

off in between) of light exercise on an exercise bike 10-30 minutes

each time ended in disaster. It lead to a relapse that I am still in

now. Taught me once and for all that I can't exercise, even if I am

putting on weight, while eatting very little.

I watched a DVD of the 3rd Invest in ME International ME/CFS

conference 2008 recently. I think it was Dr Lerner, a ME Doctor who

said he doesn't let his patients exercise until they are up to 8 on

his energy scale (0 being bed-ridden and 10 being perfectly normal).

At energy level 8 they are well into recovery, but he stressed that

exercising before that is disastrous.

There were actually a few doctors who mentioned patients who thought

they were better, did some type of strenuous exercise and relapsed

completely.

I definitely can't belabor the point enough. Exercising with ME can

be downright dangerous!!!!!!

take care, ness

[Guest guest]

hi alwyn, i'm not sure if i understood this response correctly, are you saying

that people

with ME can benefit from light exercise or even recover?

joolz

>

> Hi Judith, well I think the secret difference is largely attributable to who

> has been diagnosed with CFS/CFIDS that actually have ME and those who do

> not. The former should NEVER exercise aerobically beyond a minimal amount (a

> few minutes' walk, a little housework only IF the person is up to it), while

> the latter, and those with Fibro, can really benefit from light exercise or

> even recover.

[Guest guest]

hi alwyn, thanks for your clarification i have just received my official,

on-paper

diagnosis of me and fibromyalgia, so i'm on a bit of a 'mission' to make sure

people know

how to treat me patients. it's taken 5 years to get to the right person and get

my diagnosis

and i feel a huge sense of relief that i now have it, cos after so many doctors

have said 'it's

all in your head, love. well, you're a woman, and you're 44, you know!' you can

start to

doubt yourself. i now feel stronger with this confirmation and i intend to get

back to the

local doctor's surgery and push hard for some education there.

i'm so sorry to hear about your situation, i have recently made that connection

in my own

mind, the one about how you behave in the first phase of the illness and how

that affects

your ability to recover. your son was so lucky to have you and that you knew

what to do )

when my sister came down with it, she lost her job quite quickly and spent

nearly all her

time just sleeping, and she recovered, but she was a young woman with no major

commitments. like you, i have two children, tho i'm not single (might as well

have been

most of the time!) and we emmigrated to sweden and i had to start a new job all

within 4

months of falling ill. i did push myself quite hard that first year, but then i

crashed again

and went sick. luckily the system over here enabled me to continue with a decent

sick pay,

so the financial pressures weren't crippling. i'm still off sick 5 years later

and my job is still

sitting there waiting for me! but i'm in the process of claiming long term sick

pay so i can

just focus building up a life. every day i thank my lucky stars that i'm not bed

bound and

house bound. i'm still very disabled by my me tho, and lead a very limited

'life', but i feel

that i can now start to focus on improving my quality of life. i think i've

nearly reached the

acceptance phase! and i thought i was a quick learner!! lol! never realised i

was so

stubborn!

anyway, done enough rambling now! must go to bed

take good care of yourself,

gentle hugs from an autumnal sweden,

joolz xo

[Guest guest]

Hi Joolz, congratulations on getting a real diagnosis! Thatb is a real

accomplishment and does make things so much better for you in a way, that

you now KNOW what you are dealing with, and so, how to as much as possible.

I too was stubborn and I have paid for that. If you want to stay out of

bed/home, don’t exercise! I’m sure you probably nap, and this is what saved

me for so many years. Well, it seems to be Autumn here too, though it is

early for this part of the world. All my tomatoes are still green! Ah well,

I suppose we will still get a few sunny days for them to ripen. Gentle hugs

right back atcha, Aylwin xox