Re: Xyrem for FMS

[Guest guest]

In my experience Fibromyalgia is un or undertreated

hypothyroidism. The only way to check is sputum

hormone levels. 90% of the time it's adrenal

insufficiency or hypothyroidism with anti-bodies to

Synthroid. Do you take thyroid medication. If you do

then you are on the right track. e-mail me back, FMI

--- Jami wrote:

>

[Guest guest]

I was diagnosed with hypothyroidism before I ever had FMS symptoms, been

on hormones for that for 10 years. My mom and sister both have

hypothyroidism as well, but are otherwise healthy.

I strongly disagree with FMS being related to thyroid - I would say that

at least 50% of the people I know with FMS have no thyroid problems. My

dr., who has FMS herself, agrees. There is no proven, known cause for

FMS and maybe there never will be, but I know exactly when and what

started my symptoms, and it was a major injury.

Jami

Curtiss wrote:

>

> In my experience Fibromyalgia is un or undertreated

> hypothyroidism. The only way to check is sputum

> hormone levels. 90% of the time it's adrenal

> insufficiency or hypothyroidism with anti-bodies to

> Synthroid. Do you take thyroid medication. If you do

> then you are on the right track. e-mail me back, FMI

[Guest guest]

Dear FMS Sufferers,

Again, the key is to get sputem hormone testing.

When I say hormones, I don't just mean estrogen or

progesterone replacement therapy. I'm talking about

cortisol,tri-iodthyronine, testosterone, DHEA and

about ten others you have never heard of (Yes, ladies

your adrenal cortex makes testosterone) In my

experience every person with FMS is suffering from un

or undertreated hypothyroidism.

You just admited that you have been treated for

hypothyroidism in the past. I rest my case! I just had

a friend Cheryl that woke up after 15 years of under

treatment. Maybe I can get her to post here?

BTW, more synthroid is not the answer.

Agape,

Mike

There is no

> proven, known cause for

> FMS and maybe there never will be, but I know

> exactly when and what

> started my symptoms, and it was a major injury.

>

> Jami

>

[Guest guest]

I'm not talking about synthroid in my case, but levatrhoid. I have my

hormones checked every 4 months to be sure. I even have my female

homones check to double check and I am no where near post or peri

menopausal.

You would not believe the tests that have been run on me. I am

definatly FMS positive as well as have proven by MRI lumbar and

neck/shoulder disk degenerative problems for 10+ years. There is no ONE

thing that causes FMS...You don't just wake up with it one day. It is a

combo of things that are not conclusive or treatable.

I will argue this to the end.....

Jami in OR

[Guest guest]

Mike,

obviosly you don't suffer from it.

I don't take synthroid , but levorthroid, among other very minor meds.

Do your research a little more.

Jami in OR

[Guest guest]

Hello,

I have never had any problems with any of the things you are talking about

nor have others I know with FMS. Its wonderful for you that this was the

case for you. I think in this group you should have the respect for others'

knowledge of their own bodies and their own illnesses.

Blessed Be, Lori

on 4/20/05 6:48 PM, Curtiss at catscratchfiver@... wrote:

In my

experience every person with FMS is suffering from un

or undertreated hypothyroidism.

BTW, more synthroid is not the answer.

Agape,

Mike

[Guest guest]

Didja ever find anything about this? I spent a good amount of time looking for

it in various ways and came up only with nonrelated BS regarding the name of the

medication. Maybe I didn't look in the right places and will look again, but I

thought maybe you had come up with something by now.

I came up empty.

Hope your FMS is OK today (OK means that you aren't gritting your teeth and can

sort of stand it for a while

GA

Jami wrote:

Has anyone heard of the med listed below? Anyone in the study for this

or take it for another reason?

Orphan Medical's Xyrem, which treats cataplexy (or episodes of muscular

weakness), is currently being assessed as a treatment for a broader

range of narcolepsy symptoms, including excessive daytime sleepiness.

Orphan Medical is also conducting a study to determine whether Xyrem

could be used to treat symptoms of fibromyalgia syndrome, a chronic

condition characterized by muscular pain and fatigue that affects about

4 million Americans.

Thanks,

Jami in OR

__________________________________________________

[Guest guest]

Hi Jami,

I've read some of the study information about Xyrem, which is a form

of GBH, commonly referred to as the " date rape " drug. This is the

reason it is so tightly controlled, and is only available through one

source, Orphan Medical. It's even more controlled than Schedule II

opioids.

Xyrem is supplied in liquid form, and is supposed to take effect in

less than 10 minutes. It's very short acting, so it has to be taken

in 2 doses, one at bedtime, and one 4 hours later. Yes, you actually

have to set your alarm, wake up and take the second dose, for it to

have the maximum effect. According to the report I read, it's

supposed to reach its peak effect by 6 weeks, but usually, beneficial

effects are seen well before this time, and it reduces overall pain

and fatigue dratically. It also doesn't have same problem of efficacy

as the usual sleep meds. People who have been on it for 30 months or

more have found that it still works as well as it did in the

beginning. There is also no rebound insomnia upon cessation.

At this point, it's still in clinical trials, so it's very hard to

obtain. People who are taking it right now have gone through sleep

studies, and do not exhibit signs of sleep apnea. It's only being

prescribed by sleep specialists right now I believe, so asking your

doctor or psychiatrist would probably not garner any results.

Hopefully, those who are in the trials, and have Fibro, will have very

positive results, and it will benefit us all. I know that most of the

sleep meds on the market right now tend to give out on me after a

while, so it would be nice to have one that doesn't quit on you after

a few months!

Hope this helps some!

Jen

[Guest guest]

I never did find anything - Kayleene? or someone posted info on the med

itself, but as far as finding out anything in FMS research I came up

empty as well. My pain dr. says it's a fairly dangerous med and not

something he would ever consider messing with. It has a reputation of

being a " date rape drug "

Jami in OR