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  #41 (permalink)  
Old 08-26-2004, 06:38 PM
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This is an article from an FM specialist given when he explained that the "body thermostat" in fibromite patients is "disrupted" & not finctioning normally.

1. NORMAL BODY TEMPERATURE IS 98.6 F or 37 C.

2. YOUR BODY TEMPERATURE MAY BE LOWER THAN 97.6 OR 37 C.

3. YOUR TEMPERATURE WILL GO DOWN IF;
* You get no sleep
* You are in pain or are stiff & sore
* You exercise beyond your limits
* You do physical work beyond your limits
* You go outside when it is cold
* You are under stress-phjysical or psycological
* You feel fatigued, ill , etc.

4. IF YOUR TEMPERATURE IS LOW:
* It will interfere with your sleep
* You will be in pain and be stiff
* You will be stressed
* You will be sensitive to the cold
* You will feel fatigued , ill, etc.
* You will have problems with exercise and work ( weak, tired, etc.)

5. YOUR TEMPERATURE MAY GO UP FROM:
* Eating
* Massage therapy
* Exercising within your limits
* A hot bath

Try to take your temperature when something is happening, eg.; you feel hot or cold, hurt or don't hurt, before and after work or exercise, you feel tired or have more energy, etc. Try to discover things that raise or lower your temperature.You probably will not ba able to tell what your temperature is by how you feel.

6. BEDTIME.
* Take your temperature before you go to bed.If it is low or you feel cold, take a hot bath or shower.
* Dress warmly.You may need to wear a sweat suit and socks to bed.
* Use flannelette sheets on your bed.
* Take a hot water bottle to bed or fill a couple 2 litre pop bottles and put them in your bed a half hour before you go to bed.They will stay warm nearly all night.

7. DAYTIME.
* Layer your clothing.Easier to remove exess clothing than to shiver without the extras.

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  #42 (permalink)  
Old 08-27-2004, 08:42 AM
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I really love this stuff and THAT was interesting Janet...we're kinda thinking my dad has fibromialgia...

Sandra
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  #43 (permalink)  
Old 08-27-2004, 09:52 AM
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Sandra,
I would hate for your dad to be a fellow sufferer, but there are alot worse ailments in the world...at least this just gives pain & discomfort, unlike rheumatoid arthritis, which actually disfigures the joints.

I can remember my dad always complaining about his shoulders, elbows, and so on..he was only in his 40's then...so that is what I think he had, but then they did not know about Fibro.

Love Janet
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  #44 (permalink)  
Old 08-27-2004, 10:54 AM
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For my Dad it is his shoulders and neck....
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  #45 (permalink)  
Old 08-28-2004, 02:38 PM
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Fibro = Rheumatism?

There is some thought that fibromyalgia represents what used to be called "rheumatism." Symptoms certainly are similar, if not the same!

I wish "they" would stop renaming conditions. It removes the "legitimacy" of having a well-known condition and brings an almost "illegitimacy" to one's illness.

Thanks for all the info about temperature, Janet. I've noticed that I sleep much better if I keep my feet and legs warm. I've also worn sweaters all year round since about 1975 because my arms hurt when air conditioning or any other cool air blows across them. My DD made some "sleeves" out of polar fleece for me to wear at night. I can't stand getting too hot, but the breeze across my arms is just too much. The "sleeves" work very well both in winter and in summer as well as the "between" seasons of spring and fall.

Cheerio!
Elizabeth
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  #46 (permalink)  
Old 08-28-2004, 06:10 PM
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I always heard that fibrositis was the old term, while now it is Fibromayalgia.

Fibrositis is:Inflammation of white fibrous tissues (especially muscle sheaths)

Fibromyalgis is: (medicine) group of common rheumatoid disorders (not involving the joints) characterized by achy pain, tenderness, and stiffness of muscles, also called
myofascial pain syndrome.

Rheumatism: A chronic autoimmune disease with inflammation of the joints and marked deformities; something (possibly a virus) triggers an attack on the synovium by the immune system, which releases cytokines that stimulate an inflammatory reaction that can lead to the destruction of all components of the joint

Iwas told that Fibro, would NOT destruct the components of the joint, as with Rheumatism will


So gee, see how complex this illness is.

janet
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Old 08-28-2004, 06:22 PM
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My , thoughts, and prayers, go out for all of you, suffering with this.
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Old 08-28-2004, 06:59 PM
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Thanks Sis! There are so many of us that are suffering. I keep thinking if someone famous gets this, maybe they will grant more funding for a cure. As of now, there isn't any.

I really appreciate the prayers.

Love Ya!
Lil'Sis
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Old 08-28-2004, 09:04 PM
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Quote:
Originally posted by janet
Thanks Sis! There are so many of us that are suffering. I keep thinking if someone famous gets this, maybe they will grant more funding for a cure.
I HATE that!!! Regular "peons" can have a disease for decades and nothing is really done as far as research, etc due to lack of funds... But let someone famous get the disease and suddenly the research funding is found some where in the budget!!


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Old 08-29-2004, 03:47 AM
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Quote:
Originally posted by Abear
I HATE that!!! Regular "peons" can have a disease for decades and nothing is really done as far as research, etc due to lack of funds... But let someone famous get the disease and suddenly the research funding is found some where in the budget!!
Yeah, but realistic. The general public doesn't pay much attention to the medical conditions of their friends, relatives and acquaintences. They just assume the doctors know what they are doing. But if a public figure "goes public" with a condition, the eyes of many more are opened.

I suspect there are many "celebrities" who have fibro. This is just too ubiquotous a condition to think Hollywood stars and political figures don't have it. One or more of them (probably a whole bunch!) has this. It is only a matter of time before someone "comes out" and announces they have this.

You know, I didn't know that Teri Garr (one of my favorite comedic actresses) had MS until a month ago. She had kept it under wraps for about 5 years.

Fibro, compared to other conditions, is perceived more as an inconvenience as opposed to a life-threatening, crippling condition like MS, MD, cardiac problems rheumatoid arthritis, etc.

To my way of thinking, however, fibro causes more time lost from work than nearly any other condition. The fact that it affects the way we think as well as the entire way we live our lives is kinda frightening.

I suspect pretty strongly that fibro is a big part of the reason that the country is moving to "work from home" entrepreneurs. So many of us with fibro are able to work as long as we don't have to spend the energy commuting, walking from a distant parking location to the building or the bus / train, from a bus / train to our building, trekking all over for breaks and snacks, etc. I used to work in a big state health department building and had to park about 1/4 mile away. Couldn't commute because where we lived the buses only ran during peak commuter hours - so if a kid got sick I was "stuck" 20 miles away. It just exhausted me, and I kept thinking it was just being out of shape. Then my forearms started hurting, and I thought it was tendonitis because I was toting a heavy briefcase. It just got worse and worse. When I went to teach at Clemson Univ., I would spend most of my afternoons napping when I got home. Only had a 2 mile commute and could park right in front of my building most of the time. I couldn't understand why I kept feeling worse and worse when I was spending less and less extra energy. Then when I went back to school, I had to get a handicapped parking permit because my back and legs hurt so much I couldn't walk from the more distant parking facilities. I started pulling one of those little carts so I could tote my books and stuff without making my arms and back hurt even worse. Had some difficulty defending my dissertation because I was having a "brain fog" day that day. I was worried I wouldn't pass. I did pass, but I still have nightmares that I didn't and that I'm having to get still more work done.

I was only able to work outside the home for about 3 years after that before I gave up and started my own consulting business. I needed - and still need - to be able to flex my workload depending on how I'm feeling.

Well, the work is still coming in, even though I don't market very much anymore, and the level is just enough to keep me in grocery money and a little "mad money" while DH's salary pays the "big" stuff, like the mortgage and the utilities. I know I am blessed that this is so. I am also blessed that my family understands about my fibro. My dd will call and notice that I'm not following what she is saying, and will say - "are you having a brain fog day?" Sometimes we agree to talk later, othertimes I really struggle to understand what is going on because is it one of those "crises" that come up in every family. The ds's will always ask if I need them to stop by the grocery before they come over.

I had always been, in my own opinion, a competent person. Fibro makes me feel incompetent.

So, I hope someone with celebrity "comes out" soon and leads a campaign to focus attention on fibro. We really need it!

Cheerio!
Elizabeth
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