Re: Re: MARY FINDING HELP TO WORK WITH

March 12, 2008

HI- JUST THOUGHT I WOULD PASS ALONG,I WENT FOR MY FOLLOW-UP WITH PCP

YESTERDAY AT IT WAS SUGGESTED TO ME IF I WAS UP TO TRYING THE FIBROMYALGIA

CENTER IN BOSTON. SOMEONE EARLIER BACK HAD MENTIONED THEY ARE OR UP UNTIL NOW

HAD BEEN GOING TO ONE OF THESE, NOT MANY OF US HAD HEARD OF THEM AS SHE GOT ALOT

OF POSTS BACK ASKING ABOUT IT. I THINK THOUGH SHE SAID IT HAD COST HER 2,OOO,

THUS FAR. I GUESS SHE DID NOT HAVE INSURANCE OR MAYBE IT DOESN'T COVER. I

DON'T KNOW BUT I TOLD HER I AM WILLING TO TRY ANYTHING AGAIN, ALSO SOME

INJECTIONS INTO MY SACREILIAC, AS THIS IS TORTURE EVERY MORN NOW. I THOUGHT

MAYBE U CAN CHECK THIS OUT.I DON'T KNOW IF MY INSURANCE WILL COVER THE FM CENTER

EITHER AS I CAN NOT AFFORD TO PAY OUT OF POCKET. ALSO I FOUND A SITE THAT

PROVIDES ONGOING MEDICAL SUPERVISED TRIALS GOING ON AND THERE ARE 21 GOING ON,

NONE IN MY AREA, THE ONE IN CA. I JUST GOT NOTIFIED ON EVEN IS PAYING A LRG AMT.

OF MONEY A MO TO PARTICIPATE, HOPE THIS HELPS.

HOPE THIS HELPS TAKE CARE SHARON

wrote:

>

> Just saw a question about the length of time before diagnosis. I

realized something was wrong finally when I had a really bad flare.

Until then, I had no idea. I went to several docs over the course of

2 or 3 weeks (did not go to my family practice because I thought he

would not believe me). Well, turns out the family practice doc was

the one to diagnose me when I went to him 4 or 5 weeks after the

flare started.

> I did not realize that he would be the only one to know what fibro

was and believe me. Too bad I did not go to him at first. He had

been my doctor for YEARS.

> But because he had treated me for depression for years, I thought

he would not believe the symptoms I was having.

> hugs,

> Debra V.

>

> Think I'll put my 2 cents in on this topic! I had what I now know

was my first " attack " in 1977 or 1978, and back then my family doctor

had NO idea --- I think I have said before that his solution to

anything that happened to me, was to tell me go to Bermuda or one of

the other islands and ly in the sun --- that, I suppose was to get

out of the cold winters in Chicago. But it really wasn't until the

late 1990's that someone finally determined that I had fibro. 10

years after the first bout, the doctor I was seeing at that time was

examining one day and, I really didn't think she touched me very

hard, but she did say " Oh! I know YOU ARE IN PAIN! YOU ALMOST WENT

THROUGH THE CEILING! " And it was around that time (late 1980's) that

my husband saw an article in our local paper that mentioned

fibromyaglia. He showed it to me and it did describe alot of my

symptoms very well. I said something to my doctor about the article

and she wasn't ready to accept fibromyalgia as an actual diagnosis.

She did send me to a rheumatologist and after seeing him several

times, he told me, the next time you have a recurrance, get yourself

in here! Well, even though he and my pc were in the same group, they

were not at the same location and he refused to even treat me as he

could not review my file@

The pain specialists I was sent to in the mid 1990's were the ones

who did give me the most relief --- especially the time I got about

five or six injections of pain med directly in my sterum.

I would really like to find someone who can work with me so that I

can really learn to use bio-feed back as I think that would really

help. (or I perhaps I should find my old relaxation tape from one of

my periods while in the hospital for severe depression!) I just need

someone to help me with using it correctly.

Anyway, I know this is long but, it has been a long journey!

And one thing I am grateful for is that we NOW have the internet

where we can share our experiences such as this group!

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

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March 12, 2008