Taken from: Fibromyalgia/Myofascial Pain Syndrome Handout #3 Devin Starlanyl, M.D.

What can we do for someone who has FM?

There is no cure for FM/MPS. Many researchers are working on it. There are medications that help some of the symptoms. Trigger points can be relieved by some types of physical therapy. It takes a commitment on the part of the patient to practice good nutrition, a program of gentle stretching and moderate exercise, and a recognition of both the patient and her/his companions in life that there are real limitations for people with fibromyalgia. It isn't easy to find the right balance to optimize the quality of life. Be kind. Be patient. Be compassionate. Listen. And ask if there isn't something you can to help.

How can someone know if they have FM?

Suspect it if you have a history of widespread pain, and wake up every morning feeling like you've been run over by a truck. You may have headaches and loss of balance. Looking both ways when going into traffic can cause dizziness. You can't always find your car in a parking lot. On your best days you feel like you have the flu. You usually develop esophageal reflux. You put on weight. Some objective signs are ridges on the fingernails, goose bumps behind the upper arms and thighs, and mottling of the skin. Sometimes you get muscle twitches. You are electro-magnetically sensitive. Technically, you will have 11 of 18 specific "tender points". If these spots are pressed, you will have pain. Fibromyalgia patients just about always have myofascial pain syndrome.

That's a related dysfunction that has "Trigger Points". These TPs are incredibly painful areas that often feel like knots or hard lumps in the muscles. Taut bands of fibers form in the muscles. The TPs refer pain to other areas. They can trigger gastritis, irritable bowel syndrome, grinding of teeth at night, pain when you put your hands in cold water, dizziness, chronic inversion sprains of the ankle, weak knees, weak ankles, pelvic pain, dysmenorrhea and painful intercourse in women, impotence in men, etc.

The tightened and spasming of the muscles can entrap nerves, blood vessels, and ducts. You can have blurring of the eyes or double vision. Leg cramps, hypoglycemic-like symptoms, problems swallowing, immune dysfunction, allergies and sensitivities, sciatica, hives and rashes, numbness or tingling, mood swings, confusional states, loss of balance--the list goes on and on.

What exactly is fibromyalgia? (FM)

FM is a "chronic invisible illnesses". It isn't just a form of muscular rheumatism. It's actually a type of neurotransmitter dysfunction. (Neurotransmitters are what the brain uses to tell the body what to do.) We think 4% or more of all people have FM. One symptom is a type of dysfunctional sleep called the alpha-delta sleep anomaly. As soon as people with FM reach the deep level sleep, alpha brain waves intrude and jolt them back to shallow sleep. Not only are they denied refreshing sleep, but delta level is when the body does its repair work and chemical replenishment.

If people with FM are immobile at any time, such as during travel, or sitting in a meeting, their muscles get rigid and painful. Morning stiffness can be severe. Since neurotransmitters affect every part of the body, symptoms can show up all over, and yet the usual medical tests come back negative. FM symptoms fluctuate from hour to hour and day to day, and often worsen with changes in barometric pressure. It's no wonder that FM is one of the most misdiagnosed illness. Doctors often refer FM patients to psychologists or psychiatrists, and yet recent studies show that psychologically, FM patients have about the same amount of abnormal psychology as Rheumatoid Arthritis patients. An editorial in the Journal of the American Medical Association in 1987 stated that FM, "...a disease which may have occupied five minutes of time in medical school really exists and is a major cause of morbidity and disability." People with FM have a history of being misunderstood and doubted.

Research is showing that people with FM have defects in the neuroregulatory system, especially neurotransmitters. They have low growth hormone, which is involved with muscle repair. Some researchers think that the key problem is a CNS abnormality upstream of the spinal cord. The FM body is an engine idling at 35% power, rather than a normal 5%. Most FM patients have memory and cognitive impairments.

In FM there is an abnormal production of neurotransmitters such as serotonin, melatonin, norepinephrine, dopamine, and other chemicals which help control pain, mood, sleep and the immune system. It looks like there is a genetic predisposition. Often there has been a trigger event, such as accident. An American College of Rheumatology study in 1992 found that the impact of FM on your life is as bad, or worse, than Rheumatoid Arthritis.
They listed one major factor in this as "clinician bias". FM patients don't look sick, so they are often victimized by clinicians, family, and friends, leaving them with self-doubt, guilt, and loss of self- esteem.

FM patients have 3 times the normal amount of substance P in their spinal fluid. Substance P tells the body how much pain it feels. They also have more pain receptors. They are hypersensitive to everything--sort of like the "Princess and the Pea" in nursery stories. Little things that others take for granted, like wringing out a wash cloth, or writing a letter, become pain endurance sessions.

A comparative analysis in the "Journal of Rheumatology" this year found that the quality of life for women with FM is worse than for those who have Rheumatoid Arthritis, osteoarthritis, chronic obstructive pulmonary disease, or insulin-dependent diabetes.

20 Ways to Cope with FMS/MPS:

1. Establish a partnership with your health-care team. Interview your doctor and see if it's a good match. Ask when he'll take phone calls and when he'll return them. Trust your intuition. Learn about your illness and don't be afraid to ask questions.

2. Do what you can for your body. Practice the basics of healthy living: eat a nutritious diet, get enough rest, and participate in a MILD exercise program, even if it's a five minute walk.

3. Grieve for what you have lost. You have to accept the fact that you have a chronic illness. That means giving up who you used to be and accepting who you are now!

4. Let yourself feel your feelings. You have to go through the feelings of loss, grief, anger, sadness, when you learn you have a chronic illness.

5. Don't Blame Yourself!!! It is not your fault you're sick. we are programmed in this country to believe we can overcome anything if we work hard enough. Don't let yourself feel guilty because you have this illness.

6. Find Support it really helps to talk to other patients who suffer with the same illness. You don't have to explain a lot of things and you can't go through this feeling totally alone! (Isolation leads to suicidal tendencies, the number one killer of people who suffer with FMS). Joining a support group can be a "Lifesaver" that can help you get direction in your life. You learn a lot from other people and this will keep you from dumping on your family and friends all the time. With FMS it can be hard to distinguish between the feelings of tiredness and the helplessness and hopelessness of depression.

7. Realize that you have limits!Remember that even healthy people can't do everything. Learn to be realistic about what you expect from yourself.

8. Spend your energy wisely!Patients talk of using their precious stores of energy like coins from a piggy bank. YOU CAREFULLY RATION EVERY OUNCE OF ENERGY.

9. Set reasonable goals for yourself. If you are having a bad day, don't go grocery shopping, have a sandwich instead. You may have to lower your expectations, but then you can be successful in meeting your goals.

10. Be energy efficient. Sit on a stool in the kitchen, don't stand. When you take laundry to the basement, take a book or newspaper along so you don't have to run up and down the stairs several times. Get a handicapped parking sticker, hire someone to clean the house, divide your groceries so the canned items can sit in the car for a few days until you have the energy to bring them in.

11. Schedule rest periods. It is critical that you schedule rest before and after activities. You have to learn too, to listen to your body. Lie down BEFORE it's screaming.

12. Set priorities. Make a list of what you must do, would like to do, and what doesn't matter. when all your living must be done in a few hours a day, and with only a small amount of energy, you begin to realize what is really important.

13. Learn to adapt. Maybe you're too sick to go out to a movie, but you can ask a friend to bring over some Chinese food and to watch one on the VCR. People who really love you don't care if you cook for them or send out for fried chicken, they just like to spend time with a friend.

14. Keep work and home schedules on the same calendar. You don't want to have a big

meeting with your boss and a birthday party for your two year old on the same day.

15.Have Fun! Keep your social outlets. It is crucial to make time for play. If you have three hours of energy - work two and spend one having coffee with a friend. Keep the balance in your life.

16. Keep a journal. You don't have to write in it every day but it will help you see the patterns. You'll realize how awful you felt on the darkest days, but that you moved past that and felt good again.

17. Don't ignore your sexuality. You may have to schedule sex for when you feel good.

18. Remember you still have choices. Exercise your choices, those feelings of being in control help fight any feelings of depression.

19. Keep your sense of humor. Choose movies and reading materials that are more upbeat. We deal with enough pain and difficulty on a day to day basis.

20. Live for Today! FMS patients are living with the unknown, and living with the unknown is frightening because it reminds us that we are out of control, so we maximize the known, if you feel good, then enjoy the day. Live in the Now!