Fibromyalgia

[Guest guest]

Fibromyalgia Syndrome: What It Is

by New Harbinger Publications, Inc.

1/11/00 9:16:54 AM

Fibromyalgia is neither progressive nor deadly. There are many things you can do to improve the quality of your life. What's in a Name

Fibromyalgia Syndrome (FMS) is pronounced " fie-bro-my-al-jia sind-rome. " The word " fibromyalgia " is a combination of the Latin roots " fibro " (connective tissue fibers), " my " (muscle), " al " (pain),and " gia " (condition of). The word syndrome simply means a group of signs and symptoms that occur together which characterize a particular abnormality.

FMS is not a new syndrome. It was first described by Balfour, a surgeon at the University of Edinburgh, in 1816 (van Why 1994), but for many years the medical profession called it many different names, including chronic rheumatism, myalgia, pressure point syndrome, and fibrositis, and the condition was also thought to be psychological by some physicians. (Note that FMS is not the same as myofascial pain syndrome (MPS).) In other words, the prevailing belief was that " It was all in your head " or " It was your own fault that you were sick. "

In 1987, the American Medical Association (AMA) recognized FMS as a true illness and a major cause of disability. Aiming for a Diagnosis

The average FMS patient suffers for five years and spends thousands of dollars on medical bills before receiving an accurate diagnosis. As a result of mis-diagnosis, more than half of all patients undergo unnecessary surgery.

It isn't unusual for those who are fibromyalgia patients to feel a profound sense of relief when they learn they have a recognized illness and they come to understand that it isn't progressive.

I coined the word " FaMily " to describe the special bond those of us who have fibromyalgia all share. We often have more in common with our fellow fibromites (another newly coined word) than we do with members of our family.

If this has been your experience, you may cry with relief at not having to doubt yourself any longer. At last, someone believes you and believes in you. You really do have these symptoms and you are no longer fighting the world alone. Debilitating self-doubt can be replaced with appropriate self-care.

Admittedly, if your doctor has no specific training in FMS, his or her initial diagnosis can be extremely difficult. Patients come in with very different symptoms every visit, which often do not appear to be related to each other. These can run the gamut from sleep problems, blurred vision, falling, itching, and pelvic pain, to hearing loss, and soft tissue aches and pains. The list sometimes seems endless. The patient may look fine but he or she has constant, unsubstantiated complaints. To make things even more confusing, the signs and symptoms can, and frequently do, fluctuate from hour to hour and day to day.

In desperation, many doctors often send their patients to physical therapy or for psychological counseling. Yet, most often, every treatment a person with FMS tries only aggravates the symptoms further.

It is important to understand that FMS is not a catch-all, " waste basket " diagnosis. " FMS is a specific, chronic non-degenerative, non-progressive, non-inflammatory, truly systemic pain condition--a true syndrome " (van Why 1994). Very recently, however, the National Institutes of Health have reclassified it as a true disease, but most authorities today still say that, technically, FMS is not a disease. Diseases have known causes and well-understood mechanisms for producing symptoms. Instead, FMS is called a syndrome, which means it is a specific set of signs and symptoms that occur together.

Don't let this categorization fool you into thinking that fibromyalgia is any less serious or potentially disabling than a " disease. " Rheumatoid arthritis, lupus, and other serious afflictions are also classified as syndromes.

The essential symptom of FMS is pain except in the case of elderly patients. Older patients are more troubled by fatigue and depression. In younger people, discomfort after minimal exercise, low-grade fever or below-normal temperature, and skin sensitivity are also common.

Martha Murdock, DirectorNational Silicone Implant FoundationDallas, Texas Headquarters

[Guest guest]

I'm sorry about all your problems and I wish I has some sure-fire suggestions for treatment. I don't have fibromyalgia but I have heard of a lot of others with RA who also have fibromyalgia. This link and the links it refers to will help you to understand the disease. http://www.arthritisinsight.com/medical/disease/fms/ RA is an autoimmune disease and people with one autoimmune disease are at increased risk for other autoimmune diseases. I'm not aware of any medicines that are useful for fibromyalgia and I have heard that exercise is the only effective treatment. I hope that is not correct but it may be. Good luck and God bless.

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

From:

Rheumatoid Arthritis

Sent: Wednesday, July 30, 2003 9:01 PM

Subject: Fibromyalsia

Evening, I have been off line for a while due to my resent troubles with pain. It seems that for over 3 weeks I haven't been able to move my head and neck. The pain in my shoulders,neck, and back have made it impossible for me to even sit at the computer to read the post. I called my Rheumy's office and they told me to see my Family Dr. (this was 2 weeks ago). I went to family Dr. and he said it's just a pulled muscle. I have been going to a physical therapist since then. Every night after therapy I'm in worse shape. I started having pain in other areas of my body. I had nothing to take for relief so I could at least eat. (When I am in such pain I can't eat, I get sick, literally!) I am now at 98 pounds. I saw my Rheumy today and he said I have fibromyalsia(sp?). Is this something that any of you have been told you have, on top of the RA? With everything that I have I am to the point of depression of no return. My husband doesn't know about this recent diagnosis. I don't feel like hearing "now what", or "what next". He was supportive for a while but with feeling worse with no reason for it, he isn't very understaning about all this pain. Right now I just need someone to help me deal with all of this and someone who will just listen. I'm sorry this is so long but I really don't know what else to do. I have to go lay down. Just typing this has my neck and shoulders hurting and it's causing a really bad headache.

[Guest guest]

Harold,

I guess I can say I have a run of bad luck. my life has been full of

medical problems and now I have one to add to it. If I put on here

what I have you could make alphabet soup....lol. Have to make light

of things right now, or I'd start crying again. Like I've told my

husband, " I'm sick and tired of being sick and tired " .

Thank you for the site. I am going to look at it and see what I can

learn. The more I know the better I will be able to take care of

MYSELF.

> I'm sorry about all your problems and I wish I has some sure-fire

suggestions for treatment. I don't have fibromyalgia but I have

heard of a lot of others with RA who also have fibromyalgia. This

link and the links it refers to will help you to understand the

disease. http://www.arthritisinsight.com/medical/disease/fms/ RA is

an autoimmune disease and people with one autoimmune disease are at

increased risk for other autoimmune diseases. I'm not aware of any

medicines that are useful for fibromyalgia and I have heard that

exercise is the only effective treatment. I hope that is not correct

but it may be. Good luck and God bless.

> ----- Original Message -----

> From:

> Rheumatoid Arthritis

> Sent: Wednesday, July 30, 2003 9:01 PM

> Subject: Fibromyalsia

>

>

> Evening, I have been off line for a while due to my resent

troubles

> with pain. It seems that for over 3 weeks I haven't been able to

move

> my head and neck. The pain in my shoulders,neck, and back have

made

> it impossible for me to even sit at the computer to read the

post. I

> called my Rheumy's office and they told me to see my Family Dr.

(this

> was 2 weeks ago).

> I went to family Dr. and he said it's just a pulled muscle. I

have

> been going to a physical therapist since then. Every night after

> therapy I'm in worse shape. I started having pain in other areas

of

> my body. I had nothing to take for relief so I could at least

eat.

> (When I am in such pain I can't eat, I get sick, literally!) I am

now

> at 98 pounds.

> I saw my Rheumy today and he said I have fibromyalsia(sp?). Is

this

> something that any of you have been told you have, on top of the

RA?

> With everything that I have I am to the point of depression of no

> return. My husband doesn't know about this recent diagnosis. I

don't

> feel like hearing " now what " , or " what next " . He was supportive

for a

> while but with feeling worse with no reason for it, he isn't very

> understaning about all this pain.

> Right now I just need someone to help me deal with all of this

and

> someone who will just listen. I'm sorry this is so long but I

really

> don't know what else to do. I have to go lay down. Just typing

this

> has my neck and shoulders hurting and it's causing a really bad

> headache.

>

>

>

>

>

>

>

[Guest guest]

,

I can only offer a hug. I have appreciated similar feelings of social isolation, and it seems that most social encounters have gone by the way-side.

I am fortunate, though, to have a hubby who understands and is tolerant and patient with my situation most of the time. I do know this has impacted OUR social lives as a couple. We have learned to keep all plans tentative and enjoy them when I am up to it.

I also work in an environment surrounded by other people, even though I don't like to frequently talk about my physical adversities, if they notice I'm more quiet, I reply by saying "some days are better than others". Silly, but I fear being judged as a malingerer.

It seems that my time outside of work is often spent recouperating from work, then resting for the next week at work as well as dealing with side effects of methotrexate on the weekends.

However, I do feel better since my husband has finally accepted my encouragement to start to go out and do things without me. I just hate to hold his life back anymore than necessary, since he is greatly impacted by carrying on tasks that I'm not capable of completing.

We have had a bit of humor, in that he had carpal tunnel surgery a couple weeks ago and there is not a good pair of hands in the house. To take care of some things like opening jars, we've enjoyed a good laugh with neighbors being called upon to lend a hand. Humor seems to be therapeuitc at times when otherwise we'd all fall to the floor to cry. God bless you.... please know you are not alone. Sandy

From: ""

Reply-Rheumatoid Arthritis Rheumatoid Arthritis Subject: Re: Fibromyalgia Date: Fri, 01 Aug 2003 03:42:28 -0000

Harold,

I guess I can say I have a run of bad luck. my life has been full of medical problems and now I have one to add to it. If I put on here what I have you could make alphabet soup....lol. Have to make light of things right now, or I'd start crying again. Like I've told my husband, "I'm sick and tired of being sick and tired".

Thank you for the site. I am going to look at it and see what I can learn. The more I know the better I will be able to take care of MYSELF.

> I'm sorry about all your problems and I wish I has some sure-fire suggestions for treatment. I don't have fibromyalgia but I have heard of a lot of others with RA who also have fibromyalgia. This link and the links it refers to will help you to understand the disease. http://www.arthritisinsight.com/medical/disease/fms/ RA is an autoimmune disease and people with one autoimmune disease are at increased risk for other autoimmune diseases. I'm not aware of any medicines that are useful for fibromyalgia and I have heard that exercise is the only effective treatment. I hope that is not correct but it may be. Good luck and God bless. > ----- Original Message ----- > From: > Rheumatoid Arthritis > Sent: Wednesday, July 30, 2003 9:01 PM > Subject: Fibromyalsia > > > Evening, I have been off line for a while due to my resent troubles > with pain. It seems that for over 3 weeks I haven't been able to move > my head and neck. The pain in my shoulders,neck, and back have made > it impossible for me to even sit at the computer to read the post. I > called my Rheumy's office and they told me to see my Family Dr. (this > was 2 weeks ago). > I went to family Dr. and he said it's just a pulled muscle. I have > been going to a physical therapist since then. Every night after > therapy I'm in worse shape. I started having pain in other areas of > my body. I had nothing to take for relief so I could at least eat. > (When I am in such pain I can't eat, I get sick, literally!) I am now > at 98 pounds. > I saw my Rheumy today and he said I have fibromyalsia(sp?). Is this > something that any of you have been told you have, on top of the RA? > With everything that I have I am to the point of depression of no > return. My husband doesn't know about this recent diagnosis. I don't > feel like hearing "now what", or "what next". He was supportive for a > while but with feeling worse with no reason for it, he isn't very > understaning about all this pain. > Right now I just need someone to help me deal with all of this and > someone who will just listen. I'm sorry this is so long but I really > don't know what else to do. I have to go lay down. Just typing this > has my neck and shoulders hurting and it's causing a really bad > headache. > > > > > > >

[Guest guest]

Sandy,

It's nice to know you have a husband who is very caring and

sympathetic with your situation. I would like it if at least one

person would at least let me talk a little, just to get some relief

from being isolated and alone.(other then my youngest son-he doesn't

deserve to be the one who is supporting me an taking on such a heavy

burden). When someone does call or come over they aren't there for

me. It's most likely that they want me to do something for them or

they want to cry on my shoulders about their small problems. And

believe me, most of theirs are small but I guess to them they are

big. So I just listen.

I use to say " Life isn't fair " , but now I say " If someone told you

life is fair, they are lying " !!!! Life's not Fair " !!!!

[Guest guest]

Hi,

Does any one know if methotrexate slows down healing?I am

taking 25mgs per week and 5 mgs of folic acid per week.

I had my carpal tunnel down 12 days ago and yesterday had the stitches

removed and today have a very serious infection in the wound.the wound is

wide open and now it is too late to restitch it.

i have just started on an antibotic so here's hoping it starts to

heal.

Cheers,

ette

At 16:02 1/08/03, you wrote:

,

I can only offer a hug. I have appreciated similar feelings

of social isolation, and it seems that most social encounters have gone

by the way-side.

I am fortunate, though, to have a hubby who understands and is

tolerant and patient with my situation most of the time. I do know

this has impacted OUR social lives as a couple. We have learned to

keep all plans tentative and enjoy them when I am up to it.

I also work in an environment surrounded by other people, even though I

don't like to frequently talk about my physical adversities, if they

notice I'm more quiet, I reply by saying " some days are better than

others " . Silly, but I fear being judged as a malingerer.

It seems that my time outside of work is often spent recouperating from

work, then resting for the next week at work as well as dealing with side

effects of methotrexate on the weekends.

However, I do feel better since my husband has finally accepted my

encouragement to start to go out and do things without me. I just

hate to hold his life back anymore than necessary, since he is greatly

impacted by carrying on tasks that I'm not capable of

completing.

We have had a bit of humor, in that he had carpal tunnel surgery a couple

weeks ago and there is not a good pair of hands in the house. To take

care of some things like opening jars, we've enjoyed a good laugh

with neighbors being called upon to lend a hand. Humor

seems to be therapeuitc at times when otherwise we'd all fall to the

floor to cry. God bless you.... please know you are not

alone. Sandy

From: " "

Reply-Rheumatoid Arthritis

Rheumatoid Arthritis

Subject: Re: Fibromyalgia

Date: Fri, 01 Aug 2003 03:42:28 -0000

Harold,

I guess I can say I have a run of bad luck. my life has been full of

medical problems and now I have one to add to it. If I put on here

what I have you could make alphabet soup....lol. Have to make light

of things right now, or I'd start crying again. Like I've told my

husband, " I'm sick and tired of being sick and tired " .

Thank you for the site. I am going to look at it and see what I can

learn. The more I know the better I will be able to take care of

MYSELF.

--- In Rheumatoid Arthritis , " Harold Van Tuyl "

wrote:

> I'm sorry about all your problems and I wish I has some sure-fire

suggestions for treatment. I don't have fibromyalgia but I have

heard of a lot of others with RA who also have fibromyalgia. This

link and the links it refers to will help you to understand the

disease.

http://www.arthritisinsight.com/medical/disease/fms/

RA is

an autoimmune disease and people with one autoimmune disease are at

increased risk for other autoimmune diseases. I'm not aware of any

medicines that are useful for fibromyalgia and I have heard that

exercise is the only effective treatment. I hope that is not correct

but it may be. Good luck and God bless.

> ----- Original Message -----

> From:

> Rheumatoid Arthritis

> Sent: Wednesday, July 30, 2003 9:01 PM

> Subject: Fibromyalsia

>

>

> Evening, I have been off line for a while due to my resent

troubles

> with pain. It seems that for over 3 weeks I haven't been able to

move

> my head and neck. The pain in my shoulders,neck, and back have

made

> it impossible for me to even sit at the computer to read the

post. I

> called my Rheumy's office and they told me to see my Family Dr.

(this

> was 2 weeks ago).

> I went to family Dr. and he said it's just a pulled muscle. I

have

> been going to a physical therapist since then. Every night after

> therapy I'm in worse shape. I started having pain in other areas

of

> my body. I had nothing to take for relief so I could at least

eat.

> (When I am in such pain I can't eat, I get sick, literally!) I am

now

> at 98 pounds.

> I saw my Rheumy today and he said I have fibromyalsia(sp?). Is

this

> something that any of you have been told you have, on top of the

RA?

> With everything that I have I am to the point of depression of no

> return. My husband doesn't know about this recent diagnosis. I

don't

> feel like hearing " now what " , or " what next " . He was supportive

for a

> while but with feeling worse with no reason for it, he isn't very

> understaning about all this pain.

> Right now I just need someone to help me deal with all of this

and

> someone who will just listen. I'm sorry this is so long but I

really

> don't know what else to do. I have to go lay down. Just typing

this

> has my neck and shoulders hurting and it's causing a really bad

> headache.

>

>

>

>

>

>

>