Re: My Brother Has Fibro (I guess)

[Guest guest]

Hi Mark,

It's me again. When I finally got in to see a rheumy for my first dx I believe

I told him what

my problem was and he just agreed with me once he took a look at my hands, the

abount of

prednisone I was taking in order to live, and my family history on top of that.

After he had

been treating me for a couple of months he determined I also had fibro because

some of my

pain complaints were not accompanied by the usual sweeling and I still had

decent joint move-

ment. He ordered a complete body scan (with xray not CAT scan) with some

injection to show

all inflamation present. There must have been quite a bit. He increased my mtx

at that time,

and told me I also had fibro. Since I moved to California, rheumies I have seen

here insist

I don't have PA in my spine. They claim the pain I feel is because of being

sedentary,(Baloney!),

due to the fatigue factor, and also from the fact that I don't sleep well. They

claim my neck and

lower back pain is also due to disk degeneration. That is arthritis. So in the

last 4 years no one

has ordered any tests or xrays for my spine. Oh, except last summer, my rheumy

wanted me to

go to physical therapy for the lower back pain. The only thing he did was send

me home with 2

sheets of paper with exercizes to do. After a couple of days my back pain was

to bad I couldn't

walk so that ended that. I keep threatening to quit him and go to another, but I

dread going to a

new one and I will have to drive to down town Sacramento to go to another one,

and I am way

too intimidated to do that now. I can't handle even the smallest amount of

stress without flaring

big time. OK, now I'm rambling. My advice to your brother is to find another

rheumy and go in

with a full history of what he has already been through,. There are no tests

other than pressure

point tenderness to determine fibromyalgia. I think that some doctors will use

it as a dx for some

because they are at a loss for any other expanation. Good luck to your brother

and I hope you

both find the answers you need. God Bless,

Janet in Ca

-------------- Original message --------------

From: " verkhoturye " <radiomark@...>

> I went with my older brother to my rheumy last week so he could be

> checked out for arthritis. About 20 years ago he was diagnosed with

> Rheumatoid Arthritis by the first rheumatologist he saw. He saw

> another rheumy a few years later who said he didn't have RA and

> diagnosed him with Fibromyalgia.

>

[Guest guest]

Hi Janet

I also have Fibro and Lupus. Fibro kicks my butt sometimes. It does cause

great fatigue. I hope you are feeling better soon.

Misty

cameronparkmom@... wrote:

Hi Mark,

It's me again. When I finally got in to see a rheumy for my first dx I believe I

told him what

my problem was and he just agreed with me once he took a look at my hands, the

abount of

prednisone I was taking in order to live, and my family history on top of that.

After he had

been treating me for a couple of months he determined I also had fibro because

some of my

pain complaints were not accompanied by the usual sweeling and I still had

decent joint move-

ment. He ordered a complete body scan (with xray not CAT scan) with some

injection to show

all inflamation present. There must have been quite a bit. He increased my mtx

at that time,

and told me I also had fibro. Since I moved to California, rheumies I have seen

here insist

I don't have PA in my spine. They claim the pain I feel is because of being

sedentary,(Baloney!),

due to the fatigue factor, and also from the fact that I don't sleep well. They

claim my neck and

lower back pain is also due to disk degeneration. That is arthritis. So in the

last 4 years no one

has ordered any tests or xrays for my spine. Oh, except last summer, my rheumy

wanted me to

go to physical therapy for the lower back pain. The only thing he did was send

me home with 2

sheets of paper with exercizes to do. After a couple of days my back pain was to

bad I couldn't

walk so that ended that. I keep threatening to quit him and go to another, but I

dread going to a

new one and I will have to drive to down town Sacramento to go to another one,

and I am way

too intimidated to do that now. I can't handle even the smallest amount of

stress without flaring

big time. OK, now I'm rambling. My advice to your brother is to find another

rheumy and go in

with a full history of what he has already been through,. There are no tests

other than pressure

point tenderness to determine fibromyalgia. I think that some doctors will use

it as a dx for some

because they are at a loss for any other expanation. Good luck to your brother

and I hope you

both find the answers you need. God Bless,

Janet in Ca

-------------- Original message --------------

From: " verkhoturye " <radiomark@...>

> I went with my older brother to my rheumy last week so he could be

> checked out for arthritis. About 20 years ago he was diagnosed with

> Rheumatoid Arthritis by the first rheumatologist he saw. He saw

> another rheumy a few years later who said he didn't have RA and

> diagnosed him with Fibromyalgia.

>

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

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[Guest guest]

Is there anybody reading this post that struggled with fibro for a

long time, only to be diagnosed with PA at a later date and ended up

suffering unduly?

It took me forever to get referred to a rheumatologist when I

complained of hip pain for so many years. It wasn't until I

complained of severe back pain as well and couldn't walk without the

assistance of two canes that I was referred to my first

rheumatologist who did a thorough history and physical exam and

diagnosed me with " seronegative spondyloarthritis, with features of

PA and AS " . Now, I am on Methotrexate and Humira (was on Methotrexate

first, and then later Methotrexate and Enbrel) and walking fine after

a hip replacement last summer.

My coworker was diagnosed with fibromyalgia about 8 years ago by a

rheumatologist. Recently her hands have swollen to the point she

can't wear her rings any more and they're very painful. She also

developed petechiae due to vasculitis. Her doctor finally referred

her to a different rheumatologist who JUST diagnosed her with RA.

I think that you really have to search around to find COMPETENT

doctors in ANY specialty who will listen and explore all diagnostic

possibilities instead of leaping to the obvious/wrong conclusions

( " oh, your hip pain is ONLY osteoarthritis " , " oh, lose some weight

and all your pain will instantly go away. " , " here, try this

antidepressant medication and you'll feel better because your pain

really isn't as bad as you think it is; you look so well that there's

nothing seriously wrong with you, it's all in your mind. " ).

Good luck to you and your brother.

[Guest guest]

What totally amazes me is that my brother complained of back pain.

The rheumy took x-rays of his hands, feet and knees. I have to wonder

if he didn't even really want to have him as a patient. Brother has

been on heavy duty pain killers for so long that sometimes I wonder if

the docs are afraid of the extra baggage or something.

He's going to go see another rheumy and insist on x-rays of his back

this time.

Mark

[Guest guest]

They diagnosed me that way at first, then I got worse and years later I

developed the scabs and skin troubles of psoriasis... Sometimes it is wrongly

diagnosed and things change after years... Definitely get a second oppinion...

Love and peace always,

Shaun and Barb...