Fibromyalgia question

[Guest guest]

A friend of mine has fibromyalgia. Do you have any useful advice

that I can pass along to her that might be of help? Thank you.

Robin

[Guest guest]

>A friend of mine has fibromyalgia. Do you have any useful advice

>that I can pass along to her that might be of help? Thank you.

>

>Robin

Two things:

1. Guifenesen daily (something about phosphorus build up?)

2. Try the meat/vegie diet (no grains or casein).

I do know someone with fibro who has it clear up every time

she is on Atkins. But she can't stick with that strict

a diet for long. I suspect a lot of it is a grain problem

(since on Atkins she eats lots of cheese) and it is

listed in Dangerous Grains as a possible gluten-related

illiness. But I don't have firsthand experience with it

myself.

-- Heidi Jean

[Guest guest]

On Fri, 23 Apr 2004 22:30:49 -0700

Heidi Schuppenhauer <heidis@...> wrote:

>

> >A friend of mine has fibromyalgia. Do you have any useful advice

> >that I can pass along to her that might be of help? Thank you.

> >

> >Robin

>

> Two things:

>

> 1. Guifenesen daily (something about phosphorus build up?)

> 2. Try the meat/vegie diet (no grains or casein).

>

> I do know someone with fibro who has it clear up every time

> she is on Atkins. But she can't stick with that strict

> a diet for long.

Hmmm...you might introduce her to a cyclical carb diet, which is low

carb approach that allows you to " feast " on carbs on the weekend while

remaining fairly strict during the week. If I ever went back to a low

carb regimen this is the way I would do it. This was the low carb

approach I had settled into (having done Atkins before that, which, IMO,

is not well suited to athletes) before discovering the WD

The *New* Ten Commandments

http://tinyurl.com/245sr

" They told just the same,

That just because a tyrant has the might

By force of arms to murder men downright

And burn down house and home and leave all flat

They call the man a captain, just for that.

But since an outlaw with his little band

Cannot bring half such mischief on the land

Or be the cause of so much harm and grief,

He only earns the title of a thief. "

--Geoffrey Chaucer, The Manciple's Tale

[Guest guest]

Hi Kim,

Boy can I relate to you and your problems! After a long time

searching and trying to find out what was wrong with me, 2 rheumys

finally diagnosed fibro, because they couldn't think of anything

else. I had all these lumps, but they said " oh they're nothing,

everyone has them. " I finally found out I had Dercum's Disease,

which is like fibro but add in hundreds of painful lipomas throughout

my body. I'm sure that the dx of fibro could still stand, and as I

have PCOS and also insulin resistant (as is my daughter) it further

complicates things.

As to how you felt walking down the stairs, ditto here.

Hurray for your good doctor--let's clone him and send the clones all

over the country!

Judi in Indiana (58 yo wife, grandmother)

[Guest guest]

kim, what part of wyoming are you from?? we are looking to retire and move to

montana, the south eastern part, between miles city and billings..

rae

[ ] Fibromyalgia question

Hi all!

I am thankful for this site.

I can read all your pain, comesserate and empathize with you on

your problems with drs. and trying to find a cure or balance in

medication to help relieve the pain....

A bit of my health background: [sorry if this sounds like I'm whining

please read to the end for my question.]

When my GP couldn't figure out what was wrong with me why I was

having blinding migraines after trying to put me on antidepressants,

(his answer for everything); he sent me to a neurologist to try

heavier-duty pain meds. When that didn't work and even the

emergency room dr. threw up his hands saying there wasn't

anymore that they could do, I went to Mayo in sdale, AZ who

asked me which symptom that I was having did I want cured the

most.....They decided that my thyroid might be messing up but

couldn't find anything wrong..... Couldn't explain the edema and

pain. I thought if Mayos (the world famous medical facility in the

world) had given up with me, then I was resigned to the fact that I

was not helpable.

But for me, continuing to live a life in pain was not an option either, I

had two sons to raise! So I started researching on the internet trying

to piece all the symptoms I was having to take back to my GP dr.

and see if there was something he would listen to..... only to find out

that he was mad at me for going to Mayos..... (ego trip). So I would

only go to him now as a last resort, would rather go to the InstaCare

clinic for colds etc.

The research on the internet paid off, in that typing in a search for:

" What to do when your dr. gives up on you " brought up a dr. in

ColoradoSprings (a 12 hour drive away!) who has been my life line

to return to life. He has walked me thru, listened, and if you have a

question on anything health related he has this drawer in his desk

that he pulls out the latest information and tells you all he knows.

The reasons for the migraines, I'm a insulin-resistant Type 2

Diabetic, that unless you do the several hour long blood sugar test

you won't find it.....

The frustrating thing after find out that was that my eye dr. had

written a letter to my GP dr. asking him to run that test but because

the regulary CBC " blood tests " had come back " normal " he didn't

see any reason to put me thru the several hour long blood draw.....

Once my Dr. in Colorado Springs helped get my diet under control

and with Glucophage to help with the insulin-resistance, the swelling

and pain in the legs and feet subsided, the daily migraines became

almost non-exsistant. Now its if a weather system is coming thru a

migraine warns me that I'm headed for a fibro-flare too, and I can

brace myself until the worse is over.

Two years ago he did finally pin-point the diagnoses for

Fibromyalgia and so we have been working together on that. The

main goal is to get my body to sleep at a deeper level so that the

signal in the brain will switch to let my body heal its self. The

problem with me and Fibro is that on my own I couldn't stay asleep

long enough or deep enough for my brain to do that. I'd wake up

every hour or two hours, not able to get enough rest. Sleep

deprivation is not a good thing.

I would encourage you all not to give up on finding a Dr. that will

work with you. If I could clone my dr. in Colorado Springs and get

him to move here I would, as it is I'd go Bangladesh if I had to see

him.

With this last Fibro Flare that I'm in, my lower arms and wrists are

swelling, and my hands feel like they are swollen, my joints feel like

they are on fire and pin prickly like when your hand has fallen

asleep. Gripping a steering wheel on the way to work is a challenge

and I keep dropping stuff. Walking down the stairs this morning

was interesting in that my knees didn't want to work, like someone

had put crunchy rocksalt in them.

Pain meds for the last two days hasn't helped. the only thing that

feels good is wrapping my wrists around my coffee mug for that

heat effect, since I can't bring my heating pad to work.

Anyway, my question for you all is: does any of this description of

pain feel like anything that any of you with RA are having?

Thanks for listening,

Kim in Wyoming (the sun is shining, we are supposed to get up to

the 40's today. pain should be going away but it isn't.)

[Guest guest]

Hi Raes,

Southern part of wyoming, but we have a mountain in our back yard.

Casper.

Looking at your e-mail address, do you raise Yorkies?

The weather is getting ready to change, haven't looked at weather.com

but the fibro pain has moved tonight from my arms and wrists to

crawling up and down my back,and the migraine is settling in behind

my forehead. Time to brace for it.

Until later, Singditty-Kim

--- In , " Rae Sandberg " <Raes_Yorkies@s...>

wrote:

> kim, what part of wyoming are you from?? we are looking to retire

and move to montana, the south eastern part, between miles city and

billings..

> rae

> Anyway, my question for you all is: does any of this description

of pain feel like anything that any of you with RA are having?

> Thanks for listening,

> Kim in Wyoming (the sun is shining, we are supposed to get up to

> the 40's today. pain should be going away but it isn't.)

[Guest guest]

hi kim... yes i do raise yorkies.. i have a litter due on monday! we have 4

little ones in there... i had her exrayed a few days ago... hope they are all

girls...)

well we will not be close then when we moved to montana...

off to read more messages... rae

[ ] Re: Fibromyalgia question

Hi Raes,

Southern part of wyoming, but we have a mountain in our back yard.

Casper.

Looking at your e-mail address, do you raise Yorkies?

The weather is getting ready to change, haven't looked at weather.com

but the fibro pain has moved tonight from my arms and wrists to

crawling up and down my back,and the migraine is settling in behind

my forehead. Time to brace for it.

Until later, Singditty-Kim

> kim, what part of wyoming are you from?? we are looking to retire

and move to montana, the south eastern part, between miles city and

billings..

> rae

> Anyway, my question for you all is: does any of this description

of pain feel like anything that any of you with RA are having?

> Thanks for listening,

> Kim in Wyoming (the sun is shining, we are supposed to get up to

> the 40's today. pain should be going away but it isn't.)