Re: to Tim re: fibromyalgia

[Guest guest]

Tim,

Yes, fibromyalgia is known as a " diagnosis of exclusion, " but it is definetly

not diagnosed lightly as in " we don't know what your problem is, so we made

this up. " Fibromyalgia is not made up. I have suffered with it for many,

many years way before I ever had cardiac problems. It is a horrible thing to

live with, but there are ways of coping and methods that can make you more

comfortable. On top of everything we all went through, we don't need to feel

like fibromyalgia is all in our minds. If that is the message your docs are

giving you, then I suggest you hunt around for a rheumatologist who really

knows the ins and outs of treating fibromyalgia.

If you like, you can email me and I can send you some great FM sites that may

be of great help to you!

Peace, Ginnie

[Guest guest]

Ginnie:

Martha, my wife, was diagnosed witrh fibro about five years ago before it

was easily detected. she has been on Relafen for the most part, and it

seems to do a reasonable job. But, as she say, she is always in pain to

some degree. and it doesn't get better with time. The only good result

from all of this has been her increased ability to manage pain, something

that is more of a necessity than a boon.

Bill

Re: to Tim re: fibromyalgia

> Tim,

> Yes, fibromyalgia is known as a " diagnosis of exclusion, " but it is

definetly

> not diagnosed lightly as in " we don't know what your problem is, so we

made

> this up. " Fibromyalgia is not made up. I have suffered with it for many,

> many years way before I ever had cardiac problems. It is a horrible thing

to

> live with, but there are ways of coping and methods that can make you more

> comfortable. On top of everything we all went through, we don't need to

feel

> like fibromyalgia is all in our minds. If that is the message your docs

are

> giving you, then I suggest you hunt around for a rheumatologist who really

> knows the ins and outs of treating fibromyalgia.

>

> If you like, you can email me and I can send you some great FM sites that

may

> be of great help to you!

> Peace, Ginnie

>

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

[Guest guest]

Ginnie, I too suffer horrible from the affects of fibromyalgia please tell

me the sites. At times the pain is so grat I could just scream. thanks for

knowing that it is not allin our heads but very much a real part of life.

Sharon

[Guest guest]

Bill, It me the crazy Sharon person. How is your wife managing the pain.

did she do Bio-Feed back? If she did, did she find it really helpful. I

tried meditation and relaxation therapy and also hypnosis. I have a high

pain tolerance but someday just moving gets to me.

Take Care

Sharon

[Guest guest]

What is fibromyalgia? What are the symptoms and what does it come from?

Pardon my innocence.

[Guest guest]

Hi all,

I was just going to lurk, but it seems that I should at least add what I have

experianced. I was implanted in 1996 and put on Toprol XL 100 mg once per day.

In April of this year I mentioned to my Dr. that I was increasingly lathargic.

I speculated that it could be a gradual buildup of Toprol of the last several

years. I have not been zapped since implant. We tried going off the medication

and my energy seemed to return. Then last week I had a high blood rate/pressure

episode that didn't want to quit. It lasted overnight and long into the next

day. I put myself back on the Toprol and it went away. Now I am worried about

whether to go off the medication again or to stay on untill my next check-up.

Any experiance on the list about this? Thanks, Karl Binz

BILLANDMARTHAMAHAN wrote:

> Ginnie:

>

> Martha, my wife, was diagnosed witrh fibro about five years ago before it

> was easily detected. she has been on Relafen for the most part, and it

> seems to do a reasonable job. But, as she say, she is always in pain to

> some degree. and it doesn't get better with time. The only good result

> from all of this has been her increased ability to manage pain, something

> that is more of a necessity than a boon.

>

> Bill

> Re: to Tim re: fibromyalgia

>

> > Tim,

> > Yes, fibromyalgia is known as a " diagnosis of exclusion, " but it is

> definetly

> > not diagnosed lightly as in " we don't know what your problem is, so we

> made

> > this up. " Fibromyalgia is not made up. I have suffered with it for many,

> > many years way before I ever had cardiac problems. It is a horrible thing

> to

> > live with, but there are ways of coping and methods that can make you more

> > comfortable. On top of everything we all went through, we don't need to

> feel

> > like fibromyalgia is all in our minds. If that is the message your docs

> are

> > giving you, then I suggest you hunt around for a rheumatologist who really

> > knows the ins and outs of treating fibromyalgia.

> >

> > If you like, you can email me and I can send you some great FM sites that

> may

> > be of great help to you!

> > Peace, Ginnie

> >

> >

> > Please visit the Zapper homepage at

> > http://www.ZapLife.org

> >

>

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

[Guest guest]

Tim,I was finally diagnosed with fibromalgia about six yrs. ago. I never

talked to anyone about it because I thought they would think I was a little

" nuts " .

I remember many times when my daughter as a young child would run up and hug

me very tightly-it hurt sooo bad.However I never 'let on'.Her hugs were and

still are too prescious.

I was finally diagnosed by a rheumitologist. He started asking me alot of

questions, and told me exactly what the problem was. It was not in my mind.

I use water aerobics, bio-feedback, prayer,and stretching exercises.

Areomatherapy and alternitive medicine have really helped. I really got tired

of useing pain meds.

My quality of life has improved, and I have learned to cope with this " stuff " .

No anti-depressants, just mainly massage therapy, E-stim, chiropracty,

etc.muscle relaxers are my last resort.

It seems to come and go, and I believe stress can trigger it also.

I use a big " S " curved metal thing with round wood knobs on each end and

press as hard as I can take it - it helps.

I was trained professionally by a pain psychologist to do the bio-feedback.

I have no idea what your religious might be;I just know I pray vary hard for

God to take away the pain.Keeping in mind that whatever His will may be. I do

know this - He is not punishing us for any misdeeds. God loves us.

Okay, enough said.Keep me posted.

In His Love,

Janet

[Guest guest]

Thank you for writing back. I know fibromyalgia is a recognized disease and

I have found a Doctor who is treating it. I guess my a-mail was written more

out of frustration than anything else. The truth is, I'm sick and tired of

being sick and tired, and these last couple of weeks have been particularly

bad. I, also, firmly believe some of my fatigue and other problems are

caused by the betapace. My cardiologist says that's possible, but he's not

willing to take me off of it, because it does a very effective job of

controlling my arrhythmias. The fact is, I haven't been zapped for almost

seven years, after several years of many zaps. So, we make trade offs.

Yes, I would be interested in any web sites you have on Fibromyaligia. I

must say, I find it interesting that so many people with ICDs have fibro. It

would almost seem there is a connection of some sort. Perhaps it's the

physical and psychological trauma. There is a theory that fibromyalgia may

be cause by post traumatic stress disorder, and I think we've all been

exposed to lots of trauma. At any rate, thanks for writing. I feel better

today.

Re: to Tim re: fibromyalgia

> Tim,

> Yes, fibromyalgia is known as a " diagnosis of exclusion, " but it is

definetly

> not diagnosed lightly as in " we don't know what your problem is, so we

made

> this up. " Fibromyalgia is not made up. I have suffered with it for many,

> many years way before I ever had cardiac problems. It is a horrible thing

to

> live with, but there are ways of coping and methods that can make you more

> comfortable. On top of everything we all went through, we don't need to

feel

> like fibromyalgia is all in our minds. If that is the message your docs

are

> giving you, then I suggest you hunt around for a rheumatologist who really

> knows the ins and outs of treating fibromyalgia.

>

> If you like, you can email me and I can send you some great FM sites that

may

> be of great help to you!

> Peace, Ginnie

>

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

[Guest guest]

We all have to stick in this together for that is how we will make it. today

is very very bad for me the pain is terible and I cant' write great deal as I

am so swollen and thre pain in mylegs and ehad are bluriing my vision .