Muscle weakness

March 19, 2000

The state of the art voice recognition software has become quite good... you

need a fast PC usually :-(

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

From: <kathryn@...>

Reply-onelist

Date: Sun, 19 Mar 2000 22:07:43 -0600

><html><body>

<kathryn@...></tt>

<tt>

My daughter, 35, is having a severe CFS relapse. She was bedridden for two

years, hospitilized, then had a wonderful nine-month remission.

I also have CFS, but I do not experience the extreme muscle weakness she has.

She finds typing on the computer difficult because of the weakness in her arms

and lifting anything is almost

impossible.

Anyone with ideas?

Thanks so much,

</tt>

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

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discussed here, please consult your doctor.</tt>

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March 19, 2000

My daughter, 35, is having a severe CFS relapse. She was bedridden for two

years, hospitilized, then had a wonderful nine-month remission.

I also have CFS, but I do not experience the extreme muscle weakness she has.

She finds typing on the computer difficult because of the weakness in her arms

and lifting anything is almost

impossible.

Anyone with ideas?

Thanks so much,

March 19, 2000

Hi,

If she hasn't seen a neurologist, she needs to do so immediately!

These are serious signs that could mean a number of things. Please keep

posted! Christie

rom: <kathryn@...>

>>My daughter, 35, is having a severe CFS relapse. She was bedridden for

two years, hospitilized, then had a wonderful nine-month remission.

>

>I also have CFS, but I do not experience the extreme muscle weakness she

has. She finds typing on the computer difficult because of the weakness in

her arms and lifting anything is almost

>impossible.

>

>Anyone with ideas?

>

>Thanks so much,

>

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>

>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.

>

March 20, 2000

Hormone test --human growth hormone tetosterone other? Light wieght training

--were talk'n soup cans.

steve -not a medical Dr.

wrote:

> From: <kathryn@...>

>

> My daughter, 35, is having a severe CFS relapse. She was bedridden for two

years, hospitilized, then had a wonderful nine-month remission.

>

> I also have CFS, but I do not experience the extreme muscle weakness she has.

She finds typing on the computer difficult because of the weakness in her arms

and lifting anything is almost

> impossible.

>

> Anyone with ideas?

>

> Thanks so much,

>

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

> DON'T HATE YOUR RATE!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> 1/2120/2/_/531724/_/953525334/

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

>

> 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.

July 25, 2000

Riley wrote:

> I'm surprised that there seems to be so little help if any for muscle

> weakness as

> after all it is one of the main symptoms of ME.

> If anyone should hear of a treatment please think of me.It's horrible,my body

> feels like it belongs to a ninety year old.In fact there are probably

> plenty of

> 90yr olds who are more fit then I am.

> Cheers

Hello ,

I don't know what kind of exercise you are doing, but have you tried

isometric exercise? I did this when I was worst physically 2 years ago

and was afraid that my muscles would waste away (I could get down and up

the stairs only once a day).

I would do it lying down on my bed and contract each group of muscles

(lower leg upper leg, ower arm, upper arm and each other you can think

of) 6 seconds then rest 10 seconds. I built it up to total ca 25 min.

(about 5 rounds of all muscle groups I think) each night before sleeping

and each morning before getting up. It is also very relaxing and I still

use it sometimes if I can't sleep. In the morning when you get up muscle

stiffness is already much less after these exercises. A physiotherapist

told me later that it is better to combine this kind of exercise with

stretchings.

It looks nothing much but it keeps your muscles intact. The first time I

used it was 8 years ago when I broke my arm. It was in a cast for 10

weeks and my holiday was planned at 11 weeks. I exercised my arm in this

manner as much as possible from the moment I didn't feel pain doing it.

When the cast went off after 10 weeks this arm had more muscle than the

other one and I was able to drive 2500 m in 3 weeks holiday just after

(before CFS of course).

Last week this site with information on Cheney's protocol was on this

(or another) group. He says that anaerobic exercise (weight lifting,

isometrics, stretching) are often possible with CFS, as opposed to

aerobic exercise (walking, swimming, etc):

http://virtualhometown.com/dfwcfids/medical/cheney.html

Found 1 website with some information on isometric exercise:

http://www.geocities.com/colosseum/dome/3830

July 25, 2000

on 7/25/00 8:03 AM, Riley at runwild@... wrote:

>

> Thanks to those who suggested magnesium as a treatment for muscle twitching.

> Must admit I've taken a lot of magnesium and several different types.In fact

> I've been using it for 6 yrs. Tried amino acid combo made specifically

> according to my Newcastle uni test results and Co enzyme Q10. Nothing helps my

> muscles.

>

> I'm surprised that there seems to be so little help if any for muscle

> weakness as after all it is one of the main symptoms of ME. If anyone should

> hear of a treatment please think of me.

,

Is your muscle weakness a feeling like your limbs are encased in heavy lead?

Is it hard to do simple things like get up from the chair and go answer the

phone, climb stairs, etc.? Do you have to sometimes steady yourself on

railings, doorframes and walls because of the weakness? Is the weakness

mainly confined to the limbs, or also to the trunk? How bout the hands and

feet?

Let me tell you that I've suffered from extreme 'lead boots' type weakness

for some time. When I feel this way it's hard to even get out of bed in the

morning. I also get muscle twitching and muscle spasm/crampiness. Often

this is accompanied by slight shortness of breath -- like I can't quite get

a properly satisfying breath...

If what I've described fits your symptoms then I suspect a couple things:

1) potassium deficiency (aka hypokalemia)

2) metabolic alkalosis

Often 1) and 2) go together. Potassium deficiency can lead to metabolic

alkalosis. And metabolic alkalosis can be treated with potassium or sodium

chloride. In metabolic alkalosis, the blood is too alkaline, which affects

the ability of oxygen to be transported from the hemoglobin in red blood

cells into the tissues that need it (like muscles). The standard treatment

for the alkalosis is oral or intravenous chloride, either in the form of

sodium- or potassium chloride. I'm not sure how it works, but somehow the

chloride corrects the alkalosis. If it's potassium deficiency exists then

the choice would be potassium chloride.

You might find it interesting to know that the main symptoms of metabolic

alkalosis are: irritability and neuromuscular excitability (which would

include muscle twitching). The most effective treatments I've found for the

extreme muscle weakness and twitching/muscle cramps,spasms is 600 mg

potassium chloride 1-2x per day with meals AND Oxygen treatment a la Cheney

(20-60 min/day of O2 through a partial rebreather mask, with an O2 flowrate

of about 8-10 L/min). The O2 treatment helps to correct the alkalosis and

also corrects the O2 transport problems by helping the O2 to break free of

the hemoglobin and enter into the tissues properly.

Here are some relevant passages from the Merck Manual of Diagnosis and

Therapy (http://www.merck.com):

> METABOLIC ALKALOSIS

> Symptoms, Signs, and Diagnosis

> The most common clinical manifestations of metabolic alkalosis are

> irritability and neuromuscular hyperexcitability, perhaps due to hypoxia from

> a transient leftward shift of the oxyhemoglobin dissociation curve. Alkalemia

> results in increased protein binding of ionized Ca despite unchanged total

> plasma Ca; severe alkalemia may cause the ionized Ca to fall low enough to

> provoke tetany (see Hypocalcemia, above). Since hypokalemia frequently

> accompanies metabolic alkalosis, signs of concomitant K depletion, such as

> muscular weakness, cramping, ileus, and polyuria, can also occur.

>

> Metabolic alkalosis should be suspected when the history or physical

> examination suggests volume depletion, chronic GI volume loss, or one of the

> other clinical settings outlined in Table 12-9.

> HYPOKALEMIA (potassium deficiency)

> Symptoms, Signs, and Diagnosis

> Severe hypokalemia (plasma K < 3 mEq/L) may produce muscle weakness and lead

> to paralysis and respiratory failure. Other muscular dysfunction includes

> muscle cramping, fasciculations, paralytic ileus, hypoventilation,

> hypotension, tetany, and rhabdomyolysis. Persistent hypokalemia can impair

> renal concentrating ability, producing polyuria with secondary polydipsia.

> Metabolic alkalosis is often present, although hypokalemia can also occur with

> metabolic acidosis as in diarrhea or renal tubular acidosis. Generally, GFR,

> water, and Na balance are unaffected by hypokalemia. However, a state

> resembling nephrogenic diabetes insipidus can occur with severe K depletion.

Hope this is useful.

Hud

July 26, 2000

,

Another thing, regarding the muscle weakness- there's a condition known as

Periodic Paralysis, which is usually an hereditary disorder that affects

several family members, but also occurs as a sporadic disorder. Unlike the

name suggests, Periodic Paralysis is characterized by bouts of extreme

muscle weakness, occurring as often as everyday or sometimes only once per

year. Usually, the attacks are triggered by exercise or a high carbohydrate

meal, but the attacks normally happen only after one has finished the

exercise--typically during rest periods or especially upon awakening in the

morning. There are several different types of periodic paralysis, some

characterized by low potassium during attacks, some by high potassium, some

by hyperthyroidism.

I think I might suffer from this condition, actually. Anyhow, do check out

the following link. It gives a good, brief overview:

http://medlineplus.adam.com/ency/article/000312.htm

Hud

July 26, 2000

Hi , I was told to use Potassium for this problem along with a long

explanation as to why, but it was way beyond my ability to remember all

that. Add it to your magnesium not as a replacement.

Vale

muscle weakness

>

> Thanks to those who suggested magnesium as a treatment for muscle

twitching.

> Must admit I've taken a lot of magnesium and several different types.In

fact

> I've been using it for 6 yrs.

> Tried amino acid combo made specifically according to my Newcastle uni

test

> results

> and Co enzyme Q10.

> Nothing helps my muscles.

>

> I'm surprised that there seems to be so little help if any for muscle

> weakness as

> after all it is one of the main symptoms of ME.

> If anyone should hear of a treatment please think of me.It's horrible,my

body

> feels like it belongs to a ninety year old.In fact there are probably

> plenty of

> 90yr olds who are more fit then I am.

> Cheers

>

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> Click Here!

> 1/7060/5/_/531724/_/964527227/

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

>

> 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.

>

June 15, 2003

Liz,

When I was on Plaquenil, I developed the same kind of weakness. I

could not hold up anything. My arms got tired stirring soup! I

finally decided it was the Plaquenil. I do still have some weakness

but not to the same extreme. I also had weak legs before the

plaquenil but felt like my legs were extra heavy to move after being

on the plaquenil for a couple of months. Muscle weakness was a side

effect of plaquenil, although they say it's rare. Is it listed as a

side effect of the meds you're on.

However, I've also considered nerve impingement although they said the

herniated disks are not pinching anything. The EMG says there is a

pinched nerve, but because the MRI disagrees they are going with that.

Susie

July 11, 2006

;

Pituitrophin has made a considerable difference for my muscles. I probably

should be taking more. I am so wiped right this minute> I think I will take one

and see.

Adrienne

muscle weakness

Even though when I reflect back I can see I had a gradual onset of M.E.

When it became obviously severe it was swift and dramatic.

My muscles became weak virtually over night.

One morning I woke up and found it difficult to walk a few metres.

I was only able to be shuffle and thought perhaps I'd had a stroke.

A couple of days before I was doing a routine daily bike ride and uphill walk

that took about an hour.

It's been about 12 years and in this time my muscles have never returned to

normal or near normal.They have only weakened further.

I dislike all of my M.E. symptoms and all of them have caused huge limitations

in my life.

If I was able to eliminate only one symptom(it would be a huge toss up),I'd

choose to have my muscles back in normal working order.

At this stage I can't see any hope in sight.

Does anybody know of somebody with long term M.E. who has had their muscle

weakness reversed?I'm talking severe muscle weakness.

Dr Shepherd said in one of his early books , " if you don't have muscle

weakness you don't have M.E'.He did not mention CFS as M.E. is what it is called

in England.

Dr Shepherd is a physician who has had M.E. for many years.

I suppose not all would agree with him on this aspect.

Cheers

July 11, 2006

Hi

What is Pituitrophin - i sit a drug requiring a prescription

Has there been any clinical tests

First i have heard of this

Thanks

_____

From:

[mailto: ] On Behalf Of Adrienne G.

Sent: Wednesday, 12 July 2006 9:29 AM

Subject: Re: muscle weakness

;

Pituitrophin has made a considerable difference for my muscles. I probably

should be taking more. I am so wiped right this minute> I think I will take

one and see.

Adrienne

muscle weakness

Even though when I reflect back I can see I had a gradual onset of M.E.

When it became obviously severe it was swift and dramatic.

My muscles became weak virtually over night.

One morning I woke up and found it difficult to walk a few metres.

I was only able to be shuffle and thought perhaps I'd had a stroke.

A couple of days before I was doing a routine daily bike ride and uphill

walk that took about an hour.

It's been about 12 years and in this time my muscles have never returned to

normal or near normal.They have only weakened further.

I dislike all of my M.E. symptoms and all of them have caused huge

limitations in my life.

If I was able to eliminate only one symptom(it would be a huge toss up),I'd

choose to have my muscles back in normal working order.

At this stage I can't see any hope in sight.

Does anybody know of somebody with long term M.E. who has had their muscle

weakness reversed?I'm talking severe muscle weakness.

Dr Shepherd said in one of his early books , " if you don't have

muscle weakness you don't have M.E'.He did not mention CFS as M.E. is what

it is called in England.

Dr Shepherd is a physician who has had M.E. for many years.

I suppose not all would agree with him on this aspect.

Cheers

July 11, 2006

no, it is a dietary supplement. No prescription. It is a bovine extract. (I eat

beef, so I might as well take the extract. Not scared.) I believe such things

are called tissue extracts. Standard Process is the company name. Well-known.

Got it from my doc. He tested me for it-electrically. Don't know about clinical

tests. My doc is very scrupulous about using researched stuff, so I don't have

to think about that.

Much improved muscle strength is the main thing I noticed from it. Can lift big

sacks of groceries again, big stacks of books in my hands, again open jars. Used

to be pretty helpless. Before that, I was very strong, a massage therapist and a

gardener. Used to haul water, work hard. (Harness the mules to the wagon, drive

it, and irrigate.)

I experimented with it tonight. It did take away my totally wiped out feeling

without getting my brain too stimulated. That is a problem I have been suffering

from for awhile. I don't think I will want to stay up too late. (But one night

is too short a trial. Will try again.)

Adrienne

muscle weakness

Even though when I reflect back I can see I had a gradual onset of M.E.

When it became obviously severe it was swift and dramatic.

My muscles became weak virtually over night.

One morning I woke up and found it difficult to walk a few metres.

I was only able to be shuffle and thought perhaps I'd had a stroke.

A couple of days before I was doing a routine daily bike ride and uphill

walk that took about an hour.

It's been about 12 years and in this time my muscles have never returned to

normal or near normal.They have only weakened further.

I dislike all of my M.E. symptoms and all of them have caused huge

limitations in my life.

If I was able to eliminate only one symptom(it would be a huge toss up),I'd

choose to have my muscles back in normal working order.

At this stage I can't see any hope in sight.

Does anybody know of somebody with long term M.E. who has had their muscle

weakness reversed?I'm talking severe muscle weakness.

Dr Shepherd said in one of his early books , " if you don't have

muscle weakness you don't have M.E'.He did not mention CFS as M.E. is what

it is called in England.

Dr Shepherd is a physician who has had M.E. for many years.

I suppose not all would agree with him on this aspect.

Cheers

July 12, 2006

I have it but it started after 10 years. I am relating it to my protein

deficiency and years of immobility.It is severe now. Can not even keep my

back straight. Only thing that helps me is message.

Best wishes.

Nil

muscle weakness

> Even though when I reflect back I can see I had a gradual onset of M.E.

> When it became obviously severe it was swift and dramatic.

>

> My muscles became weak virtually over night.

>

July 12, 2006

Hi Nil,not much fun is it?

My back is also getting weaker,it's just about always sore and stiff.I have

difficulty carrying groceries or lifting anything the slightest bit heavy.

Ever since Rich has been here to give advice and support.I have greatly

increased

my protein intake.

Sorry to say it has not helped with muscle weakness.

I tried to take Immunocal many times.Each time I ended up in a heap,full on

flare ups of everything.I caught a flu every time I took it.

I can only tolerate lymphatic massage,even though I find it very painful.

All other types of massage make me ill.

I once had intense massage from these Korean monks.A lot of massaging my stomach

and abdomen.

I was so ill for days,I had the horrid flu like aching all over.

When I first got sick,everybody recommended massage.I soon discovered it's one

of the worst things I can do.

I also believe my heart is getting weaker.it often pounds,thumps,jumps with

little exertion.

Cheers

I have it but it started after 10 years. I am relating it to my protein

deficiency and years of immobility.It is severe now. Can not even keep my

back straight. Only thing that helps me is message.

Best wishes.

Nil

muscle weakness

> Even though when I reflect back I can see I had a gradual onset of M.E.

> When it became obviously severe it was swift and dramatic.

>

> My muscles became weak virtually over night.

>

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July 12, 2006

Adrienne

interesting this thread about muscle weakness. I don't experience weakness, as

such. But I feel as if the very life has been drained out of me. Now that FFC

has restored brain function, cleared the fog/cobwebs, I can be a vegetable with

a brain! LOL DH commented last night he has concerns that I've just given up

since FFC gave diagnosis of CFIDS/FM/hypothyroid/OSA/coag. defect, just don't

seem to even try anymore. Hmmm. Like sleeping all the time was trying????

He's been super supportive, I can't fault his questions/ comments/ concerns.

But, this fatigue seems to be just as bad in the hot / humid weather as it is in

winter when the cold chills my bones/ makes me ache and makes me more tired.

So, what about this picture would destroy my zest for living I wonder????

Diane in MI

Re: muscle weakness

;

Pituitrophin has made a considerable difference for my muscles. I probably

should be taking more. I am so wiped right this minute> I think I will take one

and see.

Adrienne

.

July 12, 2006

From a very new at this observer, your response to increased protein would be

related to how well your body is able to metabolize and assimilate the protein.

If it's food protein, as in meat vs predigested protein , as in a protein

supplemnt, would make a difference. Also, flu like symptoms following certain

therapies/ treatments may indicate toxic elimination that is too much for your

organs of elimination to handle all at one time.. slow and gentle is the way to

go for that.

Diane in MI

muscle weakness

> Even though when I reflect back I can see I had a gradual onset of M.E.

> When it became obviously severe it was swift and dramatic.

>

> My muscles became weak virtually over night.

>

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July 12, 2006

Diane, I understand that drained, veggie experience. When I feel like that it is

my muscles-in part, anyhow. I still get that way, mainly in the evenings-but it

is after I have exerted myself during the day. I have been doing physical

therapy 2x/wk for a couple of weeks now and I just plain pass out as soon as she

leaves-but I know I am getting stronger.

Maybe you could try the pituitrophin, too. As I wrote, no scrip needed.

As for " trying, " the less I have had to " try, " thanks to caregivers, the better

my body feels. (My spirit is very dismayed, not to be doing it ALL!)

Adrienne

Re: muscle weakness

;

Pituitrophin has made a considerable difference for my muscles. I probably

should be taking more. I am so wiped right this minute> I think I will take one

and see.

Adrienne

.

July 12, 2006

> DH commented last night he has concerns that I've just given up

> since FFC gave diagnosis of CFIDS/FM/hypothyroid/OSA/coag. defect,

> just don't seem to even try anymore. Hmmm. Like sleeping all the

> time was trying???? He's been super supportive, I can't fault his

> questions/ comments/ concerns. But, this fatigue seems to be just

> as bad in the hot / humid weather as it is in winter when the cold

> chills my bones/ makes me ache and makes me more tired. So, what

> about this picture would destroy my zest for living I wonder????

> Diane in MI

I think I remember feeling something very like this when I finally,

after decades of denial, began to really, truly, deep-down accept

that I had an incurable disease and was going to head-on need to

learn to live with it.

Denial felt like " fighting. " It kept me trying to get a lot of things

done, even though a lot of those attempts necessarily ended in

failure. As long as I kept making those attempts, I still felt like a

full participant in the world.

Acceptance, at first, felt like giving up. I stopped trying to get

all those things done, and allowed my disease to guide my actions.

More importantly, I accepted its primary role in determining the size

of my life. I learned to say " no. " I also learned, for the first

time, to sit down with people and explain to them that I was sick,

and had specific needs -- something I would have never dared to do

before. For decades, I could barely admit my illness to myself, let

alone explain it to others. It was hard, learning to do that. But

that honesty allowed me to continue to be present in the world on a

limited basis, without becoming tangled up in other people's

expectations or putting myself in the position of letting them down.

So I can understand what your husband might be getting at. You may

not be sleeping any more than you did, but now you're doing it

without apology or guilt. You are making it a priority, instead of

trying to wedge it in between other obligations. What he describes as

" zest for living " may have, instead, been the destructive will to be

" normal, " a desire that can prevent real healing, and even make you

sicker.

Once I hit that point of unapologetic acceptance, several things

happened. First, I found I was taking better care of myself -- which,

over time, began to translate in to some real, deep-level healing.

Second, my social interactions were less strained and guilty. I did

what I could when I could, avoided making long-term commitments to

anything, and enjoyed what came my way. And I stopped being ashamed

to explain what was going on. Third, something about living honestly

and openly as a PWCs made it easier to find better doctors, and try

more effective treatments. Healing was my job, and I began to take it

much more seriously. And, when I made it a priority, it started to

happen at a much faster pace.

Sara

July 12, 2006

I have a different perspective, as always. Not trying to get into an

argument here. The will to be normal, to regain myself, in full, and

to sometimes push myself, has inevitably helped me in all kinds of

ways. It has continued to allow my work to be rewarding (though I

don't travel for profiles/conferences anymore, as that's not worth the

resulting exhaustion). It has continued to allow me to participate in

a meaningful way in the world, keeping my deep spirit alive. It has

continued to allow me to ceaselessly research, ask questions, and work

hard toward understanding and obtaining therapies that might help me.

My fighting spirit, and my unwillingness to see myself as other than

temporarily, even if for years, unfairly held hostage, has kept my

sense of self intact.

That doesn't mean that sometimes I don't overdo it. On June 22 I

stayed up till 1:30 a.m. in a very intense conversation, and then on

June 23 I went out to dinner, drank wine, and went to the theater. By

June 24 I was so wiped out I simply lay in bed all day, literally lay

in bed, resting, in the rainy quiet, fell asleep eventually on my own,

then woke up and went back to sleep for the night. Did I regret my

evening at the theater? No. But I did have to rest all day and night

Saturday.

Still, I was able to go to the theater, go to a fancy dinner,

participate in the life I used to participate in all the time. For me,

without this, there would be nothing.

We are all individual. For others, there is the luxury or the absolute

need to give in completely. I know for me, before getting my

hyperbaric chamber at home, I went to a conference in Philadelphia,

when I had a lot of muscle weakness. I hid it well. One day at the

conference I was too sick to get out of bed, and I just hid out. I

missed an important interview, and rescheduled it. The man didn't

mind, and we had a great interview the next day, and he was the person

I ended up workoing on this wonderful book with for the last 2 years

that is finally finished.

For me, as I said to someone last night, it's and the angel. I

will wrestle that angel down, if it takes all night.

We are all different.

>

> > DH commented last night he has concerns that I've just given up

> > since FFC gave diagnosis of CFIDS/FM/hypothyroid/OSA/coag. defect,

> > just don't seem to even try anymore. Hmmm. Like sleeping all the

> > time was trying???? He's been super supportive, I can't fault his

> > questions/ comments/ concerns. But, this fatigue seems to be just

> > as bad in the hot / humid weather as it is in winter when the cold

> > chills my bones/ makes me ache and makes me more tired. So, what

> > about this picture would destroy my zest for living I wonder????

> > Diane in MI

>

> I think I remember feeling something very like this when I finally,

> after decades of denial, began to really, truly, deep-down accept

> that I had an incurable disease and was going to head-on need to

> learn to live with it.

>

> Denial felt like " fighting. " It kept me trying to get a lot of things

> done, even though a lot of those attempts necessarily ended in

> failure. As long as I kept making those attempts, I still felt like a

> full participant in the world.

>

> Acceptance, at first, felt like giving up. I stopped trying to get

> all those things done, and allowed my disease to guide my actions.

> More importantly, I accepted its primary role in determining the size

> of my life. I learned to say " no. " I also learned, for the first

> time, to sit down with people and explain to them that I was sick,

> and had specific needs -- something I would have never dared to do

> before. For decades, I could barely admit my illness to myself, let

> alone explain it to others. It was hard, learning to do that. But

> that honesty allowed me to continue to be present in the world on a

> limited basis, without becoming tangled up in other people's

> expectations or putting myself in the position of letting them down.

>

> So I can understand what your husband might be getting at. You may

> not be sleeping any more than you did, but now you're doing it

> without apology or guilt. You are making it a priority, instead of

> trying to wedge it in between other obligations. What he describes as

> " zest for living " may have, instead, been the destructive will to be

> " normal, " a desire that can prevent real healing, and even make you

> sicker.

>

> Once I hit that point of unapologetic acceptance, several things

> happened. First, I found I was taking better care of myself -- which,

> over time, began to translate in to some real, deep-level healing.

> Second, my social interactions were less strained and guilty. I did

> what I could when I could, avoided making long-term commitments to

> anything, and enjoyed what came my way. And I stopped being ashamed

> to explain what was going on. Third, something about living honestly

> and openly as a PWCs made it easier to find better doctors, and try

> more effective treatments. Healing was my job, and I began to take it

> much more seriously. And, when I made it a priority, it started to

> happen at a much faster pace.

>

> Sara

>

July 12, 2006

Yes,

My heart is also getting problematic.

I am surprised that message does not help you. You may wish to change your

massager. Or the type of message you are getting.or try it for a shorter

time. More than 30 minutes drain me also but it is the only thing that helps

me to keep my back straight. Otherwise I will not be able to carry my body.I

can carry only half a pound of grocery load at one hand.

bw

Nil

> From: Riley

>

> Sent: Wednesday, July 12, 2006 5:46 AM

> Subject: Re: muscle weakness

>

> Hi Nil,not much fun is it?

>

> My back is also getting weaker,it's just about always sore and stiff.I

> have difficulty carrying groceries or lifting anything the slightest bit

> heavy.

>

> Ever since Rich has been here to give advice and support.I have greatly

> increased

> my protein intake.

> Sorry to say it has not helped with muscle weakness.

> I tried to take Immunocal many times.Each time I ended up in a heap,full

> on flare ups of everything.I caught a flu every time I took it.

>

> I can only tolerate lymphatic massage,even though I find it very painful.

> All other types of massage make me ill.

> I once had intense massage from these Korean monks.A lot of massaging my

> stomach and abdomen.

July 12, 2006

When my massager leaves town for a couple of months I slowly go downhill. Maybe

now that I am exercising I could do better without her.

Adrienne

Re: muscle weakness

>

> Hi Nil,not much fun is it?

>

> My back is also getting weaker,it's just about always sore and stiff.I

> have difficulty carrying groceries or lifting anything the slightest bit

> heavy.

>

> Ever since Rich has been here to give advice and support.I have greatly

> increased

> my protein intake.

> Sorry to say it has not helped with muscle weakness.

> I tried to take Immunocal many times.Each time I ended up in a heap,full

> on flare ups of everything.I caught a flu every time I took it.

>

> I can only tolerate lymphatic massage,even though I find it very painful.

> All other types of massage make me ill.

> I once had intense massage from these Korean monks.A lot of massaging my

> stomach and abdomen.

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.

July 12, 2006

Sara

Thank you for that. You express it so well. I've printed it off and will add

it to my collection of info to refer to when I lose my perspective.