Not so new but first post

[Guest guest]

Hi everyone. I have been lurking the past few months or so, thought

I

should finally introduce myself, my name is Terri. I was offically

dx

with fibro Feb. this year, even though I've hurt this way for many

years. I'm 45 but since I was 9-10 yrs old I had leg and lower back

pain. I also have CFS wich actually bothers me more LOL, I have a

HIGH pain tolerance and since I've had pain most of my life I thought

it was " normal " . The Dr. put me on Paxil for pain and Flexrile for

the CFS.

In Feb. I went to the Dr. because I coudn't move my head and had a

VERY sharp pain in my back when I breathed in. She sent me to a PT,

there they got me on a TENS and what a difference that made. The PT

called my DR. to see if she would write an RX so my insurance would

cover it and thank goodness she did and my insurance does! After

seeing the PT for a month may back never ever felt so good. The PT

also told me about a " Study " here on fibro, which I checked out.

The " study " is for a brand new med in the US, its been in Europe for

awhile I was told. The med is called " Milnacipran " it was developed

as an anti-depressant so before starting the " study " I had

to " washout " my system for 2 very long weeks. I have been in the

study since the end of June, with what the Dr. says " The maybe or

maybe not med " and starting in Nov. I will be going on the " Real

deal " . So far I can say that I have had much much less pain but it

hasn't helped the CFS (can't take anything to help with sleep). Even

the Dr. thinks most of the people on the study are on the real drug,

said most have had less pain but poor sleep. The long term study

will

go on for 3 years. In that time They can raise the doseage to see if

it helps with the CFS or not, if not I can take my flexrile :-).

BTW I am a firm believer that FMS can be heriditary, my father and 5

of his brothers and sisters have FMS and my daughter and son.

Thankyou for listening to this long post,

Terri

[Guest guest]

Hi Terri,

I am a firm believer in the hereditary stuff too! Now

if only we could get a " shot " to cure it lol!!!

Welcome and I am sorry to here how long you have been

hurting for. Your story enlightened me because I am

thirty and found out almost three years after testing.

Not fun as you know, how old are your children that

have it, and how are you all dealing with it? You are

in my thoughts and prayers, and welcome!!!

Deb R

--- Terri Locke wrote:

> Hi everyone. I have been lurking the past few

> months or so, thought

> I

> should finally introduce myself, my name is Terri.

> I was offically

> dx

> with fibro Feb. this year, even though I've hurt

> this way for many

> years. I'm 45 but since I was 9-10 yrs old I had

> leg and lower back

> pain. I also have CFS wich actually bothers me more

> LOL, I have a

> HIGH pain tolerance and since I've had pain most of

> my life I thought

> it was " normal " . The Dr. put me on Paxil for pain

> and Flexrile for

> the CFS.

>

> In Feb. I went to the Dr. because I coudn't move my

> head and had a

> VERY sharp pain in my back when I breathed in. She

> sent me to a PT,

> there they got me on a TENS and what a difference

> that made. The PT

> called my DR. to see if she would write an RX so my

> insurance would

> cover it and thank goodness she did and my insurance

> does! After

> seeing the PT for a month may back never ever felt

> so good. The PT

> also told me about a " Study " here on fibro, which I

> checked out.

>

> The " study " is for a brand new med in the US, its

> been in Europe for

> awhile I was told. The med is called " Milnacipran "

> it was developed

> as an anti-depressant so before starting the " study "

> I had

> to " washout " my system for 2 very long weeks. I

> have been in the

> study since the end of June, with what the Dr. says

> " The maybe or

> maybe not med " and starting in Nov. I will be going

> on the " Real

> deal " . So far I can say that I have had much much

> less pain but it

> hasn't helped the CFS (can't take anything to help

> with sleep). Even

> the Dr. thinks most of the people on the study are

> on the real drug,

> said most have had less pain but poor sleep. The

> long term study

> will

> go on for 3 years. In that time They can raise the

> doseage to see if

> it helps with the CFS or not, if not I can take my

> flexrile :-).

>

> BTW I am a firm believer that FMS can be heriditary,

> my father and 5

> of his brothers and sisters have FMS and my daughter

> and son.

>

> Thankyou for listening to this long post,

> Terri

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Deb,

I have a son 26 and twin daughters 21. Only the 1 girl has to deal with

me, other 2 children live out of state, and of course hubby LOL. They

deal with me quite well, Kayla, my daughter helps around the house as much

as she can with her work schedule. Hubby is wonderful, he says don't

over do yourself on a regular basis and when I fall asleep in the recliner

in the evening he covers me up.

I have had been going to Drs.. since 1990 to get relief from my back and

legs. The Drs.. said it was OA, even rheumatologists!! My new GP was the

one who dx me, AFTER telling her about the amount of people in my family

with FMS. When she did the tender points on me ALL 18 points hurt to some

degree.

The way I DEAL with this is quite simple, to me, as I said I have a high

pain tolerance so I don't give into the mild to moderate pain till it gets

severe. I have always pushed myself to the extreme limit. I do have days

lately in which I just hurt so bad I can't do anything. The hardest part

is admitting I just can't do as much as I used too. ;-(.

Have a great day,

Terri

Re: Not so new but first post

> Hi Terri,

> I am a firm believer in the hereditary stuff too! Now

> if only we could get a " shot " to cure it lol!!!

> Welcome and I am sorry to here how long you have been

> hurting for. Your story enlightened me because I am

> thirty and found out almost three years after testing.

> Not fun as you know, how old are your children that

> have it, and how are you all dealing with it? You are

> in my thoughts and prayers, and welcome!!!

> Deb R

>

[Guest guest]

Terri-

I am so interested in hearing more about the clinical trial in which you are

participating. How did you hear about it? Please keep us posted as time goes

by. It gives me hope that more breakthroughs are on the horizon!

Love,

Becca

---------------------------------

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[Guest guest]

Becca,

The PT is was going to told me about it. The study I have been in will

last a total of 15 weeks taking either the placebo or Milnacipran. (Of

course I don't know which I'm taking) So far my overall pains and constant

backache have greatly improved. Starting in mid Nov. I have the option of

going into the " Long Term " study. So far I'm wanting to go the distance

with this. The only side affects I have noticed was in the first few

days - some loss of appetite and mild headache. (I'm one of those people

that usually experiences every know side affect to meds.) Since I don't

know for sure if I've been on the " Real Drug " is part of why I want to

continue with the Long Term study, because then I will get the " Real Drug " .

I'm kind of excited to see if there's any change in my pain.

I should mention that I live in Memphis, TN. and the study is closed here,

but I asked the Dr. and he said to go to www.clinicaltrials.gov and

type

" fibromyalgia " in the Search Clinical trials box. You will have to look at

the individual trails to find out the locations and requirements. Hope

this helps!

Terri

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

I am so interested in hearing more about the clinical trial in which you

are participating. How did you hear about it? Please keep us posted as

time goes by. It gives me hope that more breakthroughs are on the horizon!

Love,

Becca

---------------------------------

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rates.