Re: A few answers

April 29, 2002

sammi19662001 wrote:

> Does anyone else get the feeling that fibro is hormone related? I

> think instead of saying this is an auto immune disease they should

> look into hormones. Yes I also have problems with food I eat, and

> that could also explain that the hormones are involved...

No, I think they will find it is a neuro muscular disease, kind of in

the MS direction. I do think it is possible that hormones can make it

worse since I always have tended to do worse with any illnesses when

having my period then the same illness on any other day. I think they

will find that there are several different kinds of fibro, like there

are several different kinds of MS, which will explain why we react

differently to various things. I've seen people say they are worse when

they eat beef or dairy. I can eat beef or dairy all day long and not

have an increase in problems, so I'm betting they'll find there are

several subgroups affected by different things.

Darcy

April 29, 2002

My personal opinion about the antibiotics is that they should never

be used prophylactically for any extended period of time due to the

same reasons stated of the people before me. I have had MRSA

(methycillan resistant staph aurius) in my lungs, and new resistant

strains of things come out all the time. I've read many different

ideas on what fibro is all about. I'm always interested in hearing

new opinions or research going on about it, so I thank you about the

mitochodrial stuff (have never heard of it) but is worth looking

into. The way my pain feels, I tend to lean toward the theory that

it is autoimmune, and the theory that it has to do with the muscular

sheath that surrounds the muscles and connects more densely in the

joints because that is how it FEELS to me. Before I was diagnosed,

it was hard for me to describe it to my doctor cuz I'd say, " well its

more profound in the joint, but the pain also radiates kindof

throughout. " It also FEELS to me as an inflammation type of pain.

But of course the theory also that the nervous system is

hypersensitive would certainly account for the fatigue and IBS

associated with it. I don't know about the hormone stuff, I just

read about a study they were doing with it. All we can do is wait

and hope. Oh and the SIDS thing...I read they found that ECOLI

sepsis is what is responsible for it....Then again, I read a lot of

stuff. LOL I'm no help at all.

>

> sammi19662001 wrote:

> > Does anyone else get the feeling that fibro is hormone related? I

> > think instead of saying this is an auto immune disease they should

> > look into hormones. Yes I also have problems with food I eat, and

> > that could also explain that the hormones are involved...

>

> No, I think they will find it is a neuro muscular disease, kind of

in

> the MS direction. I do think it is possible that hormones can make

it

> worse since I always have tended to do worse with any illnesses when

> having my period then the same illness on any other day. I think

they

> will find that there are several different kinds of fibro, like

there

> are several different kinds of MS, which will explain why we react

> differently to various things. I've seen people say they are worse

when

> they eat beef or dairy. I can eat beef or dairy all day long and

not

> have an increase in problems, so I'm betting they'll find there are

> several subgroups affected by different things.

> Darcy

April 29, 2002

Isn't nice that we can all have so many differing opinions about

what's the cause of our woes, without getting upset at each other?

Personally, I feel that fibro is viral in origin, since the symptoms

are similar or mimic ones from ohter diseases so closely. I found the

stealth virus article fascinating, and I'm going to bring it up at my

appt. today. As for the mitochondrial article, it just makes me think

about reading the Madeleine L'engle books as a child. A Wrinkle In

Time, A Wind In the Door, etc. That was where I first heard the word

mitochondria. :-), Odd how I can remember that, yet not remember I

asked my friend the same question twice in five minutes....

When I went in and got my found records from my doctor on Saturday,

he reminded me that the reason he had originally sent me to the

rheumy 4 years ago, was that a recent blood test had shown a speckled

pattern, which is hard to interpret, but usually indicates a

rheumatoid condition, such as lupus. Which is why he disagreed with

the fibro diagnosis. He doesn't want me to be lumped into a category

that won't benefit me. Hmmpphh! The rheumy did his own bloodwork, and

lupus was not indicated. I feel my doctor is trying to excuse his

behavior, but I will look into this again.

Everybody take care,

April 29, 2002

> Isn't nice that we can all have so many differing opinions about

> what's the cause of our woes, without getting upset at each other?

This reminds me of this card my Aunt sent me, and I want to share it

with my friends here:

" THE FRIENDSHIP ROAD "

(author unknown~~by me~~LOL)

I have a warm and friendly feeling

As I think of you today;

And I wish that we could visit,

But you're many miles away.

Separated by such distance,

Yet your emails bring you near;

Thru the miles we share a friendship

That's become to me most dear.

Friends through email only;

Still, your face I need not see

For your soul shines through the pages

Every time you write to me.

You've a special way of writing,

Warming as the sunshine rays,

Bringing joy and inspiration,

Pages brightening up my days.

You've enriched my life, my dear one,

And I'm glad God willed we meet,

" Friendship's Road " is that much nicer

Traveling it with one so sweet

LOVE & LIGHT,

April 29, 2002

I have to agree with Darcy.I have believed for some

time now that fibro is related to MS.I don't know

about you but as for myself and a large number of

fellow fibromites that I have talked to,when I first

went to the doctor and told him my symptoms,I was

tested for MS.Also,I read a medical report on another

site that said a " large number " of people who were

diagnosed with fibro,are now being diagnosed with MS.

As far as hormones being involved Im not sure,but I

too have a much harder time before and during my

period.

Hope everyone has a good week! Carole

__________________________________________________

April 29, 2002

> > Does anyone else get the feeling that fibro is hormone related? I

> > think instead of saying this is an auto immune disease they should

> > look into hormones.

I have a question regarding sammi's comment about fibro being a auto

immune disease.I have never read where fibro is considered this.I

have often felt that it is (auto immune disease) because of all the

ways it attacks you,but have never seen fibro listed as such.Is it an

auto immune disease? This would open many doors for me. Thanks Carole

April 29, 2002

This is interesting, I was diagnosed with MS (1999) and now they are

telling me I don't have MS, but I do have fibro.

Rhonda

Re: A few answers

I have to agree with Darcy.I have believed for some

time now that fibro is related to MS.I don't know

about you but as for myself and a large number of

fellow fibromites that I have talked to,when I first

went to the doctor and told him my symptoms,I was

tested for MS.Also,I read a medical report on another

site that said a " large number " of people who were

diagnosed with fibro,are now being diagnosed with MS.

As far as hormones being involved Im not sure,but I

too have a much harder time before and during my

period.

Hope everyone has a good week! Carole

April 29, 2002

> This is interesting, I was diagnosed with MS (1999) and now they are

> telling me I don't have MS, but I do have fibro.

>

> Rhonda

Hi Rhonda,It is very interesting.If you wouldn't mind could you tell

us what tests you had to dx MS? And why after 3 years have they

changed their minds and now say you have fibro.I had/have all the

symptoms of MS but because there were no lesions on my brain,they

said I didn[t have fibro.But from what I have read,there is now

evidence that there is more than one type of MS.Just like MD and

arthritis.The new MS they have found,you have lesions on the spine

instead of in the brain.Also,were you on meds.for MS and did they

help you? You are welcome to e-mail if you'd like. Have a good day

Rhonda. Carole

April 30, 2002

pandabear79us wrote:

>

> --- In @y..., " DigitalAngel "

>I had/have all the

> symptoms of MS but because there were no lesions on my brain,they

> said I didn[t have fibro.But from what I have read,there is now

> evidence that there is more than one type of MS.Just like MD and

> arthritis.The new MS they have found,you have lesions on the spine

> instead of in the brain.

I was also tested for MS, but because there was no lesions on my brain,

they said I didn't have it. Someone at work, then told me that their

aunt didn't have lesions on the brain, but did on the spine and she had

MS. No one suggested that they should look at my spine. I have seen

that there is a fair number of people who have both MS *and* fibro, or

fibro and lupus, so I wonder if there is either a body or genetic

condition that can cause you to have the second condition?

Darcy

April 30, 2002

kithain wrote:

> When I went in and got my found records from my doctor on Saturday,

> he reminded me that the reason he had originally sent me to the

> rheumy 4 years ago, was that a recent blood test had shown a speckled

> pattern, which is hard to interpret, but usually indicates a

> rheumatoid condition, such as lupus. Which is why he disagreed with

> the fibro diagnosis. He doesn't want me to be lumped into a category

> that won't benefit me. Hmmpphh! The rheumy did his own bloodwork, and

> lupus was not indicated. I feel my doctor is trying to excuse his

> behavior, but I will look into this again.

Actually, your doctor maybe smarter than your rheumy! Lupus doesn't

always show up in bloodwork. There is a certain group (small) of people

who do have lupus, but don't test positive for the antibodies. My

rheumy admitted this to me, and I've seen it on quite a few lupus

sites. A good rheumy (not saying yours is not) won't just go by

bloodwork, they'll listen to your symptoms too. If you fit the lupus

symptoms, but don't have positive bloodwork, you probably do have

lupus. You could actually have both since there are a fair number of

people who do have both. You might want to check out the lupus-living

group which is a group for the people who have either lupus, fibro or

both.

Darcy

April 30, 2002

I had an MRI of the head and neck because I was having pain in the back

of my neck that was shooting down to my elbow. That MRI showed lesions

on the brain. I had to have surgery to correct the disk in my neck that

had come out into my spinal column, literally crushing my cord and while

I was out they did a spinal tap. They did 3 tests on the fluid, 1 came

back positive for MS (or the little pieces of myelin). I also had a

lesion on my spinal cord (this was a few months after surgery), my

neurosurgeon told me to expect my left foot to go numb. This was 2 1/2

years ago and it hasn't happened, but I do have nerve damage in that

foot. I have since learned that lesions can show up when there is nerve

damage. When they did the spinal tap, they did it *after* they released

my spinal cord, which would cause bits of myelin to flow through the

fluid, thus causing the one positive result. I've had 3 - 4 " attacks, "

usually one of my hands would go numb, as in if I stuck my hand in my

purse I could feel things, but couldn't tell you what it was. They

would do another MRI, there would be another lesion, but I have nerve

damage in my neck, shoulders, hence the lesions. The neurologist that

I have now has studied my file and MRI's. She say's that the way my

" attacks " are they are not consistent with MS. Usually when there is an

MS attack, there is a lingering effect from it, I don't have any. I

always fully recover. I was on the MS medication Copaxone. I couldn't

tell ya if it worked or not. I've been off it for months, haven't had

any problems beside the usual nasty pain. Oh and 8 months after surgery

some jerk rear-ended me, hitting me at 45mph, I was stopped in traffic.

That is when all the pain began. The doc's were sure that I would have

an MS attack because of the trauma, but I never did. The neuro told me

that it is highly probable that the accident caused the fibro.