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Taking the Misery and Mystery out of Fibromyalgia

By Myriam Maytorena, M.Ed.

Fibromyalgia is considered by many to be a fairly new disorder. However, the truth is it has been around for a long time, it is only lately that scientists and medical experts have been able to name this compilation of symptoms and to lump them together under the name of Fibromyalgia Syndrome (sometimes called FMS).

To a person like me, who has suffered from this misdiagnosed disorder for more than 30 years, there was no question that something seriously was wrong with me. However, for years, like many others that suffer from this disorder, I went from doctor to doctor seeking an answer and relief. What I found was frustration, misdiagnoses, confusion, insult (and personal injury at the hands of one osteopathic physician) and was not able to discover what was really wrong till my sister Glenna read an article in Prevention Magazine that lead me to solve the mystery of my suffering.

Fibromyalgia syndrome (or fibromyalgia) is a chronic disorder associated with widespread muscle and soft tissue pain, tenderness, and fatigue. A person with fibromyalgia will experience pain when up to 18 specific areas called tender/trigger points are pressed. Pushing carefully on these specific trigger points during an examination causes discomfort or sharp pain.

The cause of fibromyalgia is not known. Fibromyalgia has been recognized as a medical disorder only since the 1980s, although there is evidence it may have existed for centuries. Some believe that the cause of FMS is the result of a sleep disorder. In the incidence of FMS research indicates an interruption of the sleep cycle prevents the sufferer from moving from stage 3 REM (rapid eye movement) sleep to stage 4 where the body relaxes and thus tension is maintained in the nerves and muscles. Others indicate that chronic pain keeps one from sleeping and thus exacerbates muscle and nerve tension and manifests depression and anxiety. It is like a chicken and egg kind of event -- does the sleep disorder create the pain or does the pain create the disorder? One of the main contributors to FMS is stress. There is nothing that will cause an FMS flare-up faster than stress in one's personal or professional life.

The pain of fibromyalgia is more than normal muscle aches common after physical exertion. Fibromyalgia often can be severe enough to disrupt a person's daily work and activities. I am often incapacitated for weeks and may have to use a cane to walk. I have known some that had it so severe that a wheel chair was required for mobility.

Fibromyalgia can be difficult to diagnose because its symptoms are similar to many other disorders and diseases. There are no lab tests to diagnose fibromyalgia. It is often diagnosed after other conditions have been ruled out. Fibromyalgia is diagnosed when:

A person has had widespread pain for at least 3 months. To be considered "widespread," the pain must be both above and below the waist and on both sides of the body. In one time of flare-up I was in bed for more than six months.

At least 11 of 18 specific tender points are painful when pressed. (Because symptoms vary widely from person to person, some people with fibromyalgia may have fewer painful tender points.)

Women are more likely to develop Fibromyalgia than men and the average age of on-set is between 30 and 50. However, with age the possibilities increase. However, the onset can be at any age. There is some indication that what used to be called growing pains in children could be a form of fibromyalgia.

At a basic level, most people with fibromyalgia are suffering from diffuse muscle and tendon shortening, driven in part by multiple nerve compressions throughout the spine and limbs. Spinal origins from the neck, mid back and low back figure prominently in it’s source of pain. It seems deep spinal muscles cause deep nerve compressions and traction that cause further muscle problems in the spine, limbs and head. Pain can be directly from the muscles crushing a joint, or from pain referring into the joint from the spine. Typically both exist at the same time. Headaches can exist from referred pain from the neck but also from local muscle problems around the head.

FMS has basically three components that feed into each other and exacerbate the condition: A. Chronic Pain, B. Sleep Disruption, and C. Anxiety and/or depression.

When managing FMS (there is no cure only management techniques at this time) one must take a three pronged attack....

1. Manage and treat Chronic Pain,
2. Manage sleep disruption, and
3. Manage and treat anxiety and/or depression.

While one hopes to be able to work with one's health care provider, it is important for the person who has FMS to develop control over treatments, interventions and management. It is very easy when one experiences such a chronic syndrome to buy into some really goofy ideas for healing and treatment. I am a believer in the effectiveness of complimentary medicine and use it in my own treatment plan. However, I also realize the importance of traditional western medicine and medication in the management of this syndrome.

The biggest fallacy that I found in management of my FMS was that exercise would make it all better. In other words, I was told that even though I could hardly walk without a cane if I would just workout everyday or three times a week, my symptoms would go away. All this did was make me feel guilty if I did not go to the gym and at no time in my experience did any type of physical or aerobic exercise reduce my pain. In fact, the opposite was often the case. However, I did discover that stretching did help with the disorder. And, when I stretched in the morning before I got out of bed, I was able to move with greater ease and, somewhat, reduce my level of pain. I was then able to do other exercise, which was good for my heart and other lifestyle issues.

The first step to controlling FMS symptoms is to control and manage stress. Choosing to value simplicity in one's life and opting for less physical, emotional or mental stimuli or chaos will decrease flare-ups. Good cognitive behavioral management skills learned with the support of a cognitive therapist will help. These are the skills that are taught in pain management clinics. Controlling stress means controlling one's reaction to internal and external events. Meditation is any of the forms available will significantly reduce stress and the pain associated with FMS flare-ups.

Every salesperson or believer in supplements was ready to cure my disorder with their latest passion. While I am all for supplements if one needs them because of deficiencies, choosing a healthy diet takes care of most deficiency. Except in one incidence. MSM a naturally occurring sulfite helps in reducing or managing pain. There is no proof that it cures FMS but it does significantly reduce painful flare-ups. Oh, I forgot another one. A alcohol rub that has been infused with marijuana will relieve pain when applied topically. However, it is kind of hard to get marijuana legally for medical purposes. MSM is plentiful, works and is fairly inexpensive. I have not experimented with topical applications of MSM. [As a side note, my dog Alice found great relief from a torn cartilage and could walk and run easily when she received her MSM supplements.]

Anything that reduced inflammation can sometimes be of help. Although, I have never found relief when I used traditional pain medications including aspirin, ibuprofen, codeine, and so forth in managing the discomfort of FMS. I have found cold water baths and ice packs will help. Some folks find that heat works better. It is really a personal matter as to which works better.

Natural herbal supplements for depression have had no effect in my case. Some people do find relief with the use of St. John's Wart. Small doses of allopathic antidepressants do help with the sleep disorder component, which leads to pain relief.

Perhaps, the most difficult issue facing those who suffer from FMS is finding a correct diagnosis and learning to accept that the diagnosis is real. After years of going from doctor to doctor I had come to believe that my condition was a result of a psychological or psychosomatic disorder. In fact, sometimes when I feel good (like when I remember to take my MSM regularly, reduce my stress, stretch and move and do happy things) I think that my FMS is all in my mind. However, when the flare-up occurs again and I am bent over in pain I realize that it is not an imaginary disorder and I get back into my mode of controlling my FMS.

As a final note, if others do not understand that you are suffering from real pain and discomfort it is important to take note of yourself from their point of view. If you are the "average" FMS sufferer you probably look very healthy in a plump kind of way. You are probably above average intelligence and creative. You might even be rather spiritual or involved in empathetic health activities. You might appear to be a bit "high-strung" as anxiety is often a part of FMS. It helps when those in your personal world are not sympathetic or understanding of your condition, to seek out a support group of people who have to deal with FMS on a daily basis. Take a proactive approach and educate those who are close to you about the realities of FMS. If they are openly disrespectful and do not want to be supportive of your condition and you have been unable to cope with their behaviors, consider taking a course in assertiveness training. The skills learned in a course like this will help you take control of your life and your disorder and empower you when dealing with family, co-workers, and health care providers. Remember, only you know how you feel. Do not negate your suffering or your pain or you path to a healthier and more comfortable life by using the uniformed feedback of those who do not really understand FMS.


Copyright 2002-2041. Myriam Maytorena, M.Ed. is a counselor and spiritual coach.