'Chronic Healing' located at: http://chronichealing.com/: Endometriosis Blog: Fibromyalgia Awareness And Resources For Endometriosis Patients Affected By This Commonly Co-Existing Condition

10/06/2008

Endometriosis Blog: Fibromyalgia Awareness And Resources For Endometriosis Patients Affected By This Commonly Co-Existing Condition

Since fibromyalgia affects so many endometriosis patients, I thought today I'd post a video about fibromyalgia and some resources people may find helpful.

Fibromyalgia is a very common co-existing condition with endometriosis and I know many women who have both conditions (myself included).

Awhile back, I had added a graphic to this blog's sidebar regarding the National Fibromyalgia Association's "Pledge To Care".

Here's the link to the NFA's Pledge To Care: National Fibromyalgia Association's Pledge To Care

For more information on fibromyalgia, I follow this blog:

Fighting Fatigue: Top Resource Site For Chronic Fatigue Syndrome, Fibromyalgia, and IC Disease

I've also found this site helpful:

Fibromyalgia Network

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Editor's Note:

Today's article on Fighting Fatigue: Top Resource Site For Chronic Fatigue Syndrome, Fibromyalgia, and IC Disease cites a study by the National Fibromyalgia Association that found that the physical function of a woman with fibromyalgia is less than that of an 80 year old.
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This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

5 comments:

Jeanne said...: Today's article on http://www.fightingfatigue.org/ cites a study by the National Fibromyalgia Association that found that the physical function of women with fibromyalgia is less than that of an 80 year old.

Check out the article on ---http://www.fightingfatigue.org/.

Jeanne; October 6, 2008 at 4:37 PM
Mckay K said...: Hi Jeanne I found the video very informative.

I once worked with a woman with Fibromyalgia. It was the first time I heard the word Fibromyalgia. Shortly after she told me she had been diagnosed with it, she quit her job and moved to Florida. That was nine years ago.

I am told that she has since moved back here and that her condition has worsened.

My heart goes out to anyone diagnosed with it. Not surprising, her initial diagnoses was that it was all in her head.; October 8, 2008 at 3:18 AM
Jeanne said...: Mckay k,

I'm glad you liked the video. Thank you for your comment.

The first time I heard of fibromyalgia was in an endometriosis support group back in 1992. The endo group leader was saying she thought it would be a good idea to be connected to the fibro support group and she was looking for a liason between the two groups.

I was in my early 20s at the time, knew nothing about fibro, had never even heard of it, didn't really understand how they (endo & fibro) were connected, and kind of wondered to myself, "I wonder why she wants a liason between these two groups". I just wasn't informed about fibro at all then.

Well as the years went on, I learned more and more about fibro through being involved with endometriosis support groups in different cities I lived in throughtout my 20s and 30s. It didn't sound fun!

Then I began having symptoms myself. I was not a happy camper. One of my specialists (my pelvic pain specialist) who sees many women with fibro said to me, "I really think you have fibro based on your symptoms and your response to trigger points but you should go to a rheumatologist to get the diagnosis confirmed".

So I went to the rheumatologist. He said, "you definitely have fibro". He proceed to do a bunch of tests because both he and my pelvic pain specialist were looking for MS specifically and they were also checking for lupus (very long story... I have been checked for this a lot over the years).

In the end, the rheumatologist (who was very nice) ended up acknowledging that there wasn't much he could do for me (long story but I had already tried "classic" treatment options for fibro without success and some of the treatments were contraindicated for me as well).

So I give him credit for admitting we were at a dead end rather than stringing me along when he knew that didn't have any more treatment options for me. No sense driving all over the place and paying copays to someone who knew he couldn't help me!

The weather DEFINITELY affects my fibro! I live where it gets very cold in the winter (sometimes below 0 degrees F). One year, went to visit family in Florida. For weeks my pain had been off the charts. I got off the plane and I swear to you that I was almost pain free just about immediately!

When we returned home a few days later, it was about 4 degrees out. Our car at the airport was in an outdoor lot. By the time we walked halfway to our car from the airport to the parking lot, I had gone from almost no fibro pain back to off the charts!

Temperature makes such a difference! For some people, moving is the answer. Moving, in our case, is totally impractical.

Also, I wouldn't be able to live in a climate like Florida's for other health reasons! (I have extreme heat intolerance and tend to faint in the summer where I currently live. Living in a place like Florida would make me really sick in other ways).

So, for me, the answer is to do my best to avoid either extreme in temperatures.

For the fibro, rainy and cold weather is my enemy.

For other illnesses, extreme heat has caused to me pass out in doctor's and dentist's office on several occasions.

I think the reason I usually pass out in medical offices is the combination of really hot days with the thin "indoor/outdoor" carpet that those offices tend to have in waiting rooms or at the checkout area. This has happened to me several times.

I have multiple chemical sensitivity syndrome and those carpets make me very sick! The incident at the dentist was when they had just installed their carpet a couple of days prior to my visit.

I was in the building for less than a minute when I got VERY dizzy, saw spots, and started to see black. My sister (it was her appt and I had driven her since she was ill) and young daughter were with me. My sister has the same "carpet problems" that I do and was having the same issues.

I managed to make my way up to the front desk and asked if there was an exam room (with no carpet) that we could wait in... explaining that the carpets were making us both feel faint and that we weren't trying to "jump the line"... just trying to get away from the carpet.

She immediately went to the back and got the dentist and another woman. They let us into the non-carpeted area and we both started going down. The dentist caught me and as I fell & got me into a chair in one room.

The woman got my sister before she hit the floor and put her in a chair in the next room.

My poor daughter was frightened watching both adults with her so sick, so suddenly. It was really something.

Needless to say we got out of the building ASAP after they had brought us ice to cool us down, etc.

The chemicals used to make carpets can be especially toxic to sensitive individuals. People who have never experienced this or even heard of it find it baffling but these chemicals are bad for EVERYONE... not just those who have immediate reactions.

I couldn't go into the local pharmacy after remodeling for months afterwards. My husband had to go for me. I tried going in once and immediately felt faint and turned right around & left. My husband had to pick my stuff up. I could feel that I would faint in the time it would take to pay for my prescriptions.

Now the local library is installing new indoor/outdoor carpets. It seems like everywhere I turn there is another building that I can't go in without risking fainting!

Anyway, back to the fibro. In the winter, I bundle up like crazy. Keep in mind when I was younger, I used to always be HOT and would wear shorts in the winter (as in during snowy days) and think nothing of it.

Now in the winter, I have to bundle up like crazy to run out and grab the mail. It's just ridiculous. My body has changed drastically and I've had to learn to adapt.

In the winter, my Reynaud's disease makes my hands feel "frozen" and my fingernails turn blue... even when our woodstove is REALLY cranking and the house in above 80 degrees. My husband will be sweating bullets while I'm wearing my coat and mittens indoors and shivering. It's just out of control.

Believe it or not, I'd rather live with the aggravated hands and feet of Reynaud's and the aggravation to my fibro symptoms than be randomly fainting all the time from heat.

Needless to say, fainting from the heat isn't safe when I will then need to drive, when I'm with my daughter, and when I tend to faint in spots where my fainting itself ends up prolonging my stay in the building with the source (i.e. carpets) that made me faint (not helped by those hot, hot days).

I think MANY of my illnesses are interconnected. It's complicated.

All I know is fibro makes me feel like my entire body is one big bruise. I feel like I've been beaten up. It's indescribable how much it hurts. My husband can't hug me because it hurts too much at times. When he does hug me, it has to be very lightly. It's awful.

When I read the http://www.fightingfatigue.org/ story about (younger) women with endo having less functionality than women in their 80s, I thought, "holy cow, it's not just me who feels that way"! Fibro is a terrible illness that affects so many things. It's just debilitating.

So I live with it but it's not my favorite illness because the pain it causes is profound and it has a huge impact on quality of life.

At the same time, I can't be fainting from heat due to living in a hot climate because it's not safe to be randomly fainting all the time, especially when my daughter is with me or if I faint at the doctor's when she's at school and it makes me late getting home to get her off the school bus.

It's a real dilemma. I just do the best I can but it's not fun. Some days are worse and some days are better.

The video is 'dead on' about crummy days aggravating fibro. I can feel when rainy, crummy weather is on the way from my fibro the way arthritis patients can often feel it on its way. I feel like a weather vane.

It is preposterous that there are docs out there who make people feel like fibro in "in their heads". It makes me so angry!

A few months back, a very controversial New York Times article proposed that fibro isn't a real illness! Believe me, I wrote a letter to the editor on that one and signed a petition from Fibromyalgia Network and wrote to the National Fibromyalgia Association, etc. The NYT got flooded with letters from angry patients and doctors!!

Fibro is very poorly understood and patients generally receive very poor (or no) treatment for it.

To have a major newspaper write an article question the validity of fibromyalgia being a "real" illness just burned me up.

Fibro affects me in countless ways and it just amazes me how many people have it now. I found the part at the end of the video where there was a picture of the Earth especially interesting because fibro diagnoses have skyrocketed & I believe that pollution/toxins are absolutely connected to fibro.

I think fibro diagnoses are up (at least in part) because of exposures to certain environmental conditions.

Military personnel exposed to various toxins in war overseas have displayed symptoms of fibro, chronic fatigue syndrome, multiple chemical sensitivity, etc. I do not believe for a minute that this is a coincidence.

My fear is that fibro will continue to affect larger numbers of people until we can get at the causes of it. I like the way the video tied fibro to environmental conditions because I truly believe there is a connection there.

Fibro is a horrendous illness that affects pain levels immensely and severely impacts quality of life.

I think people not believing that it's "real" is sometimes even worse than the physical pain.

Anyone in severe chronic pain wants to be validated, believed, and understood. Fibro patients are among the most misunderstood patients. Also, fibro patients almost never have just fibro. They usually have numerous illnesses.

There was an excellent, thought-provoking article about this yesterday on http://www.fightingfatigue.org/! I have met many women who have fibro plus at least a handful of other illnesses. It's really sad how many people are affected by this horrible illness AND by so many other illnesses too.

Jeanne; October 8, 2008 at 9:37 AM
Fighting Fatigue said...: Hi Jeanne! What a great video that helps get the info out there about Fibromyalgia. As a Fibromyalgia/CFS/IC patient, I am glad to see Fibromyalgia getting so much exposure over the past year or so. I wish it was the same with my other illnesses. Keep up the great work here! Hope you are doing well! :) P.S. Thanks for the link!

Sandy at Fighting Fatigue; October 12, 2008 at 9:45 PM
Jeanne said...: Hi Sandy!

I'm glad you like the video. It really resonated with me and I decided to post it since I figured others would relate to it too.

Like you, I have fibromyalgia, IC, and a whole slew of other illnesses.

I'm happy too that fibromyalgia is finally starting to be taken more seriously (at least by some)! I hear you about wanting the same kind of validation with other illnesses!!

It's amazing how much more awareness is needed for so many illnesses... not just in society but within the medical community itself.

Thanks for your kind words! I'm hanging in there. The last couple of weeks have been really challenging with my fibromyalgia, actually.

The weather/'seasons changing' is throwing my body for a loop.

My whole body feels like one big bruise lately. It's quite overwhelming.

Thanks again for the feedback!

Jeanne :); October 12, 2008 at 10:19 PM