Fibromyalgia:

The Painful Energy Zapper!

My mother, who was just fifty at the time, felt as though she always had the flu. Her muscles cried out in intense pain. Her energy level did a nose-dive. She was reduced to sitting in a recliner with a heating pad propped behind her neck or back, and a constant diet of aspirins and pain killers.

The pain had been affecting her for several years, but now it had increased in intensity and duration. Frustrated with her doctors who seemed unable to help her, she embarked on a personal search to find out what was wrong. She searched medical books and literature until she found a little known musculoskeletal disorder called fibromyalgia syndrome (FMS for short). She had many of the exact symptoms listed. Armed with the information of her discovery, my mother went back to see her doctor. Her doctor studied it and finally agreed that she seemed to have the same disorder.

Until my mom contracted FMS, I had never heard of it. Now I know that fibromyalgia means pain in the muscles, ligaments and tendons - the fibrous tissues of the body. Not to long ago, FMS was known as fibrositis, implying inflammation in the muscles. Researchers soon discovered that there wasn't inflammation, just pain.1

Fibromyalgia affects millions of Americans every year and can strike at any age. "Women are affected five to ten times more often than men," says James J. Curran, M.D., an associate professor of medicine at the University of Chicago Medical Center. Why do women suffer more? Dr. Curran thinks it's due to the tremendous amounts of pressure at home and work. It seems that people with this disorder are hardworking people.2

Although fibromyalgia can be caused by hypothyroidism, usually doctors are baffled and unable to verify any one cause. Dr. Curran says that it's possible that the frequent brief awakenings at night may cause increases in the body's levels of substance P. Substance P is a "pain amplifier" that can cause muscle pain.2

Some doctors believe that fibromyalgia may also be linked to exercise (not enough or too much), stress and poor posture, says Jeffrey M. Thompson, M.D., an assistant professor of physical medicine and rehabilitation at the Mayo Clinic in Rochester, MN.2

Fibromyalgia syndrome may mimic a post-viral condition and this is why several experts in the field of chronic fatigue syndrome (CFS) and fibromyalgia syndrome (FMS) believe that these two syndromes are the same.1

Usually, laboratory testing of FMS patients is inconclusive. So you may ask, how is FMS diagnosed? The diagnostic criteria used for fibromyalgia syndrome is based on eighteen tender points found on the body. These tender points cluster around the neck, shoulder, chest, hip, knee and elbow zones. Patients must have sweeping pain in all four sections of their body for a minimum span of three months. They must also have pain in at least eleven of the eighteen designated tender points. An estimated seventy-five percent of CFS (Chronic Fatigue Syndrome)-patients will meet the FMS criteria. So how do you tell one disorder from the other?1

Many chronic pain syndromes have the same symptoms as FMS, but there is a way to differentiate between the varying syndromes. In the 1990 multi-center criteria study (published in the February issue of Arthritis & Rheumatism) examiners evaluated a total of 558 patients, of which 265 were classified as controls. These control individuals were age and gender matched patients with low back pain, neck pain syndrome, local (regional) tendinitis, rheumatoid arthritis, lupus, trauma-related pain syndromes, osteoarthritis of the knee or hand, and other painful disorders. While these patients all had symptoms that were similar to FMS, the trained examiners were not fooled. The examiners picked the FMS patients out of the group with an accuracy of 88%. As you can see, FMS is not to be taken lightly.1

Yes, young people do get fibromyalgia too! Has your doctor told you that those persistent aches and pains that your child has are growing pains? Does your child's' school tell you that your child is lazy? Well maybe it might be true, and maybe not. You might consider that your child may also be suffering from fibromyalgia. While not fatal, there is no known cure, but there are ways to cope with energy that comes and goes, periods of severe pain, and the stress and depression that can seem overpowering.

In the book, "Fibromyalgia Syndrome & Chronic Fatigue Syndrome in Young People," Fibromyalgia Network's Kristin Thorson, supplies parents with helpful information about understanding FMS/CFS and getting appropriate treatment. Topics covered include: managing the illness, dealing with the school systems, symptoms of the illness, what medication is appropriate, minimizing the severity with rest & relaxation and physical therapy, setting reasonable educational goals for the child, plus a listing of support organizations.3


Symptoms & Associated Syndromes of FMS

PAIN - The pain associated with fibromyalgia tends to reappear with regularity, sometimes over an entire lifetime. It has no limits and is described as a deep muscular throbbing, shooting, aching, burning, and stabbing pain. Patients report that the pain is worse in muscles that are used repeatedly. And most often, the stiffness and pain are worse in the mornings.1

FATIGUE - Symptoms are described as being on a scale from mild to incapacitating. Some patients report being "brain fatigued," which means they feel as though someone unplugged their power supply. Some feel like their legs and arms are tied to steel posts that are sunk in cement.1

SLEEP DISORDER - Many FMS patients have a related sleep affliction known as the alpha-EEG anomaly. This condition was discovered in a sleep lab with the assistance of a machine that registers the brain waves of patients during sleep. It was found that FMS patients could fall asleep normally, but their deep level--or stage 4--sleep was continually interrupted by streams of awake-like brain activity. If you constantly feel like a bulldozer has run over you when you wake up in the mornings -- what doctors call un-refreshed sleep--it is reasonable for your doctor to assume that you have a sleep disorder. You might also be interested to know that patients diagnosed with CFS have the same alpha-EEG sleep pattern and that some FMS patients have been found to have other sleep disorders, such as bruxism (teeth grinding), restless leg syndrome, sleep apnea, and sleep myoclonus (nighttime jerking of arms and legs). Clinically depressed patients have a distinctly different sleep pattern from both the FMS or CFS patients.1

IRRITABLE BOWEL SYNDROME - Forty to seventy percent of FMS patients suffer from one or more of the following: Constipation, frequent abdominal pain, diarrhea, and abdominal gas and nausea.1

CHRONIC HEADACHES - Can make life difficult and hard to cope with for this group of sufferers. Fifty percent of FMS patients have recurrent migraine or tension-type headaches.1

TEMPOROMANDIBULAR JOINT DYSFUNCTION SYNDROME - Or TMJ as it's commonly called, can cause tremendous face and head pain in one quarter of FMS patients. Most of the problems caused by this affliction are thought to be related to the muscles and ligaments surrounding the joint and not necessarily the joint itself.1

OTHER COMMON SYMPTOMS - Muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, frequent changes in eye prescription, dizziness, impaired coordination, premenstrual syndrome and painful periods, chest pain, morning stiffness, cognitive or memory impairment and numbness and tingling sensations can occur with FMS.1

AGGRAVATING FACTORS - Anxiety, physical over-exertion, stress, depression, hormonal fluctuations (premenstrual and menopausal states), cold or drafty environments, and changes in weather can all produce symptom flare-ups for FMS patients.1


Restoring Lost Sleep is Essential

    Since no one knows for sure what causes FMS, there are no known preventive measures that can be taken. The most important priority is to restore lost sleep. Sleeping pills don't work because they make you groggier than before. However, there is a class of prescription drugs called tricyclic antidepressants that seem to help many patients. The two most commonly used drugs are amitriptyline (Elavil) and cyclobenzaprine (Flexeril). Patients have noticed that they sleep better, feel better, and that their symptoms have decreased. Not getting enough restful sleep can cause muscle pain and stiffness. Then the muscle pain and stiffness erode sleep bringing about an endless cycle of pain and discomfort.

Although you don't want to stay on the medications forever, you want to take them long enough so that the pain/fatigue/pain cycle can be broken.2


Self - Help Strategies

Dr. Thompson, at the Mayo Clinic in MN, says that there are many things you can do to help. For example:

*  Watch your posture. Try to stand tall with shoulders back and arms relaxed at your sides. Sit up straight in a chair with your feet flat on the floor, elbows relaxed at your sides and your forearms level with the top of your desk.

*  Alternate tasks. Repetition--working at a computer key board all day--can cause fibromyalgia to flare-up. Don't spend too long doing one activity.

*  Hit the track. Do aerobics, swim, or even dance, because exercise that gets your blood circulating and your pulse rate elevated for steady periods of time will help lessen muscle pain and fatigue.

In a study done in Canada, forty-two people were assigned to two groups. One group was given stretching exercises, while the other was assigned aerobic exercises. After twenty weeks, both reported improvement, but those in the aerobics group reported having less pain compared to those in the stretching group.

Aerobic exercise stimulates the release of chemicals--for example, cortisol and endorphins-that are the body's natural painkillers. In addition, exercise is an excellent stress reducer, adds Dr. Curran, assistant professor of the University of Chicago Medical Center. "If there is a stress component to the disease, exercise may relieve your stress."

*  Lay on the heat. Heating pads, hot packs, whirlpools and massage can give a welcome, though temporary relief to FMS sufferers.2

So What Should You Do?

    So what can you do if you think you might have this disorder? The first thing you need to do is learn all you can. Next, visit your doctor and discuss what you've learned. Some doctors are open and helpful, while other doctors might tell you that fibromyalgia is just a catch all term used when all other diseases or disorders are ruled out. Consider a second opinion or even a third! It's your body and your life and you do have a choice! Search until you find a solution.

                                                        Never, never give up!

Here's what mom has been doing...

(1995) My mom, who is now fifty-six, has tried many of the recommendations listed above and has found relief from her symptoms, but not a cure. She has her good days and her bad days, but cold weather is the most difficult. Her body really seems to ache more when it's cold out or when there's a drastic weather change such as a storm front moving through the area. The nutritional supplement that she has found to help the pain is a Malic/Magnesium capsule by Ethical Nutrients (1-800-668-8743), San Clemente, CA. While it's not the only one out there it is the one that her nutritionist recommended at this time. It would be wise to find a good nutritionist to advise you on the correct supplements to take. There are some supplements that aren't worth buying - they're cheaply made and of a poor quality. A nutritionist can also advise you on the correct dosage to take. Mom's nutritionist advised her to take 2 capsules 3 x's a day for two weeks, then taper off a little at a time to see what her body needed. You can find Malic/Magnesium from some health care professionals as well as health food stores. (See side bar information for other companies that carry malic acid supplements.) There have been studies done with malic acid and FMS patients and malic acid does seem to help relieve pain in many patients, but not all. It seems that malic acid is an energy source that creates and causes increased ATP levels. Many patients with FMS are deficient in ATP at their tender points, so it has been suggested that malic acid might increase the level of ATP, therefore relieving the pain.3

Mom has also found a supplement called Glucosamine - Sulfate with Chondroitin 400mg, made by Basic Organics, Inc. Columbus, OH 43209. (Pharmaceutical Grade) She takes this and said it really helps the pain in her neck and shoulders. (Osteo Arthritis) Your local health food store should be able to get it for you. It costs about $39.99.

Information:

*  To get a copy of Fibromyalgia Network Newsletter write or call: Fibromyalgia Network, 5700 Stockdale Hwy., Suite 100, Bakersfield, CA 93309/phone(805)631-1950.

*  Other educational materials that may be helpful are: "Coping with FMS" by Beth Ediger costs $7.95 U.S. funds. Send check to LRH Publications, Box 8, Station Q, Toronto, Ontario, Canada M4T 2L7. Or "FMS" by M. Saathoff costs $4.00. Order from FACO, 3545 Olentangy River Rd., #8, Columbus, OH 43214.

*  "FMS and CFS in Young People (A Guide for Parents)," edited by Kristin Thorson. Published by Health Information Network, Inc., this book is 58 pages long. Copies are available for $10 US funds in the US and Canada, $12 US outside of North America, through Fibromyalgia Network, 5700 Stockdale Hwy., Ste. 100, Bakersfield, CA 93309-2554.

*  For a copy of "The FMS Ohio Newsletter write to: Fibromyalgia Association of Central Ohio, P.O. Box 21988, Columbus, OH 43221-0988 or call (614)457-4222. Published quarterly. Annual subscription is $15 in the US, $17.50 in Canada, $20.00 in other countries.

*  Other sources that carry malic acid supplements: SuperMalic-available from Optimox Corp., call 1(800)223-1601. Fibro-Care available from To Your Health, Inc., call 1(800)801-1406. UltraATP-CFIDS Buyers Club, call 1(800)366-6056. Information taken from The FMS Ohio Newsletter, Summer 1994, p16.

References:
1 Fibromyalgia Syndrome (FMS): A Patient's Guide. Fibromyalgia Network, 1990.
2 Hoffman, Matthew and LeGro, William and editors of Prevention Magazine Health Books. Disease Free. Rodale Press, 1993; 199-202.
3 Fibromyalgia Association of Central Ohio Newsletter. Summer 1994; p8, 16.