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Fibromyalgia / Fibro Myalgia

(Formerly known as fibrositis, but what's in a name?)
Researchers claim that it has been around for years.
It knows no boundaries, as far a sex, age, or race.
Hereafter called FM.

What is FM?

What is it not? Once again we will eliminate the negative connotations. FM is not arthritis, rheumatism, cancer of the bone, a bacterial infection or a psychiatric disorder. We do not have a 'form' of polio', suffer from accumulated stress, need more exercise, had too much exercise, 'pulled a disc', tendon, or muscle. It is not sciatica, old age, caused by a draft, nor are we malingerers, who wish to get caught up on our reading. We do not want to be housebound and watch the 'soaps'.
It has been said "that FM doesn't exist and that is has become a court-driven ailment that has mushroomed into big business by plaintiffs". This from an Alberta judge, Justice Bonnie Rawlings, in her third ruling on FM. Her opinion was apparently based on the testimony of a psychiatrist and an anesthesiologist. We have since enjoyed a victory in the courtrooms of Alberta. Alberta will be officially celebrating Awareness Day this year.
Even that old standby, Chatelaine magazine published a negative article about FM, in July of 1999. It carried an article alluding to the fact that a doctor's diagnoses could make you sick. In the article, it left the impression that when a certain individual was advised by her doctor, that she suffered from FM, she was ill for a long time. The article reads that one day, this woman decided to change her attitude, and from that point on, she was completely cured of FM.

The National ME/FM Action Network responded to Chatelaine with a letter that was published in the September, 1999 issue. Chatelaine also said that this will not be their last word on FM. Did I really spend money on that magazine?

I found FM very difficult to research and write, but not as difficult as living with it. There are so many overlapping syndromes, like CFS, and MCS, and conditions with the same or similar symptoms. Several kind people tried to help me find the CDC case definition, but we had no success. If anyone does have it, please let me know.

The Arthritis and Rheumatism Criteria
(Based on CDC 1994 guidelines)

For the most part, routine laboratory testing reveals nothing about FM or CFS. However, upon physical examination, the FM patient will be sensitive to pressure in certain area of the body called tender points.

To meet the diagnostic criteria, patients must have:

Part A

Widespread pain in all four quadrants of their body for a minimum of three months.

Part B

At least 11 of the 18 specified tender points

These 18 points used for diagnosis, cluster around the neck, shoulder, chest, hip, knee and elbow regions. Over 75 other tender points have been found to exist, but are not used for diagnostic purposes.
Do you ever feel like you have the 76th new point?

Symptoms from Other Reputable Sources

FM is a chronic condition characterized primarily by widespread pain throughout the body.
The name, literally means, pain in muscles and tissue.

 1.  fatigue
 2.  irritable bowel
 3.  skin and chemical sensitivities
 4.  dizziness and light headedness
 5.  menstrual cramping (especially in men, ha!)
 6.  irritable bladder
 7.  sleep disorder or unrefeshing sleep
 8.  morning stiffness (not morning sickness)
 9.  chronic headaches of a new type or sensation
10.  cognitive or memory loss (brain or fibro fog)
11.  numbness and tingling sensations
12.  muscle twitching
13.  post-exertional malaise and muscle pain
14.  jaw pain, including TMJ
15.  sensitivities to light
16.  sensitivities to cold
17.  sensitivities to noise (turn that TV down)
18.  difficulty in concentration
19.  feeling of burning in the muscles
20.  MCS

I know that most of the time I feel achy, or have severe pain. I feel as though I had been run over by a big truck. It feels like an inflammation in my muscles, but researchers have proven that there is no visible inflammation there. The pain feels like it is stabbing, burning, shooting and just about anything hurtful imaginable.

Possible Treatment for FM

Wherever I researched, I came up with two basic treatments.
Treat the quality of sleep:
Deep level sleep is crucial for our bodies to function. Our bodies' need a chance to repair tissue, produce antibodies, a chance to regulate various neurotransmitters, hormones, and the immune system chemicals. Researchers think that our lack of 'quality sleep', contributes to the pain.
Doctors often prescribe anti-depressants (not just for depression), and benzodiazapams (i.e. clonazapam).
Deep level sleep is crucial for our bodies to function. Our bodies' need a chance to repair tissue, produce antibodies, a chance to regulate various neurotransmitters, hormones, and the immune system chemicals. Researchers think that our lack of 'quality sleep', contributes to the pain.
Doctors often prescribe anti-depressants (not just for depression), and benzodiazapams (i.e. clonazapam).

Treat the pain:

After these two treatments come other treatments, such a water therapy, gentle stretching exercises,and proper nutrition. Some doctors will try injections of lidocaine in pressure points, or refer you to physical therapy, acupuncture, acupressure, relaxation techniques, chiropractic care, and therapeutic massage, or touch.
I have tried all of the above, with the exception of the injections. The only thing that relieved some pain was water therapy, but you cannot stay in a heated pool forever. Even the therapuetic touch hurts too much. As I mentioned in 'the welcome', I have also tried self-hypnosis and magnets. The only thing that gives me a pain-free body for a few hours, is nitrous oxide, and I can't spend all my time at the dentist's either.
Some doctors prescribe an older tricyclic anti depressant such as Amitriptyline for sleep, joint pain, and depression. I take it, after trying many different anti-depressants, Amitriptyline works for me. I am on a higher dosage, but usually manage to get some sleep, and I honestly don't know if it helps to ease the pain.
The scary thing to me, is the prescription of heavy narcotics. I wrote about addiction in the CFS section.

The main point seems to be cyclical pattern:

We don't get the proper quality sleep, so we feel pain, and we feel pain, so cannot sleep. What a conundrum!

As I type this, I am looking forward to a program on 20/20 on which Dr. Timothy Johnson reports that we might be cured by surgery. Again, we go back to the CFS section and read about the Chiari Malformation syndrome. Just don't get all excited by the program and perform trepanning on yourself.
Seriously, I am very anxious to watch this program.
My husband called from work the other day, all excited, and said he had heard on the radio there was a cure for CFS and FM. He was referring to the upcoming 20/20 report. I hated to dash his hopes, but I have grown a little skeptical. How many doctors have you gone to that said XXX or YYY might cure you.

People with FM often need a rheumatologist to determine the cause and rule out other potentially progressive rheumatic diseases.
In the ideal situation, the rheumatologist, as the team leader, enlists and coordinates the expertise of other health care professionals in the care of the patient.

Please look under Possible Treatments in the CFS section of this site. There are many other methods of treatment that overlap.

Possible Causes

The cause of FM is unknown. There may be a link between FM and a sleep disturbance, since most patients have disruptive sleep patterns. Other factors that may contribute to the development of FM , or sustain symptoms, are psychological stress, immune or endrocrine abnormalities, or biochemical abnormalities in the central nervous system, such as altered serotonin levels.

In 1975, two Canadian physicians, and researchers, Harvey Moldofsky MD, and Hugh Smythe MD, were asked by colleagues at the University of Toronto to interview patients complaining of chronic muscle pain, for which no physiological cause could be found. Following the interviews these Canadian pioneer researchers, suspected sleep abnormality and further studied the patients using EEG. The device measured the patient's brain waves during sleep, and it was found that the patients had a deficiency in the stage of sleep, known as stage 4.
The researchers continued studying sleep disorder as a factor in FM. One of their studies involved awakening healthy people and disrupting their sleep pattern as they entered stage 4 of sleep. It was found that the healthy subjects developed FM symptoms when their sleep was disturbed, but the symptoms subsided when they slept, undisturbed.

*Note: If you go to a sleep lab, make sure that all needles are clean. One sleep lab in Toronto infected a few people with Hep 3.

Though the cause of FM remains elusive some researchers believe that there are many triggering events which cause it's onset. A few examples would be a viral or bacterial infection, an automobile accident, or the development of another disorder, such as lupus, or rheumatoid arthritis. These triggering events probably don't cause FM, but may awaken an underlying physiological abnormality, that is already present, as a result of genetics.

The body's response to exercise, stress, and simple alterations in position are also being evaluated to determine if the autonomic nervous system in not working properly.

A Dr. Goldenberg, believed by many to be an "outlaw" highlights the similarity between FM and CFS, and goes as far as stating that "these syndromes overlap so extensively that it may be concluded that each represents different presentation of the same general condition".
Dr. Crofford et al pointed out "This is unlikely to be the case because, as Crofford et al pointed out, "comparison of hypothalamic-pituitary-adrenal axis function in FM with patients with CFS reveals differences , despite the significant clinical overlap between these patients," Dr. Evengard et al, "further support that FM and CFS are different disorders, in spite of overlapping sympomatology"

So, there you have it. If you refer to CFS causes, you will find the same, many differing opinions. I just thank God, that a least, there is some research going on.
Goldenberg DL. Fibromyalgia Syndrome a decade later: What have we learned? 1999
Crofford LJ, Engleberg NC, Demitrack MA. Neurohormonal perturbations in fibromyalgia 1996

Coping Skills

As before, please be kind to yourself. Adapt your lifestyle to help you conserve your energy and minimize your pain.
My children have left the nest, and my husband, dog, and cat, live at home. I cannot imagine having family responsibilities. I have a tremendous respect for, and am in awe of FM sufferers with children.

Learn what factors aggravate your symptoms and avoid them if possible.

Get an inexpensive head set for your telephone. On some days it just hurts too much to hold the phone, even if you are housebound and desperate for the sound of a friend's voice.
Another suggestion on the net recommends a hot rice pack on the back of your neck, or where ever you ache the most. You pour several cups of dry, raw rice (except Minute Rice) into a sock or pillow case. Tie the sock or pillow case closed with a good knot. Toss your sack in the microwave for a couple of minutes, or more, depending on the size of your sack, and it relaxes a muscle spasm.
Thank you Deborah Barrett

I am going to try this tonight. Can you picture sitting in your doctor's waiting room with a pillowcase of rice on your head?
**Caution: Be sure that you use unscented rice if you have MCS. So many friends have given me bath oil and scented candles, but I cannot use them. The fragrance makes me sick.
You will see many more coping skills in the CFS section. If you have more coping skills, please let me know and I will put them in the FM section.

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