Saturday, July 17, 2010

Living with Fibromyalgia

Fibromyalgia is thought to be the result of miscommunication in the body's nervous system.  There are theories about neurotransmitter deficiencies, improper firing of synapses, etc.  Someday, researchers will figure it out.  Until then, FM is defined by its tender points.  There are a number of painful spots on the body that are common to nearly all people with FM.  The current diagnosis of FM depends on hypersensitivity in at least 11 of 18 pairs of these tender points.  These spots hurt when we touch them.  Press deeply on them, and we may very well kick you.

There are other symptoms associated with FM: poor sleep, fatigue, "fibro fog", etc.  The list is long, and not every person with FM has every symptom on the list.  These varied symptoms make it a difficult condition to diagnose and manage.  For many years, physicians and other health care providers discounted FM.  Before I finally got my diagnosis, I had been told by a rheumatologist that I should never mention FM because my doctors would immediately write me off as a hypochondriac.  A physical medicine and rehab specialist told me that FM was a "wastebin diagnosis" and, were she to apply it to me, I would be forever labeled as a complainer and a difficult patient.  A third physician, an internist, told a relative of mine that he "disliked FM patients" and did not want me as a patient.  When I finally found a physician who understood FM, he immediately tried to prescribe a very potent narcotic for my pain.  In the end, I found a rheumatologist who actually knew something about FM and started me on simple pain medicine cocktail that involved no controlled substances.  He was the first person who started me on the course back to a stress-free life.  The important thing to remember about FM is that it is real, it is documented, and it is manageable.

How do I live with FM?  First, I take four pills that make up my pain medicine regimen.  Narcotics have been shown repeatedly to be ineffective in treating FM.  I do not want them, and I will not take them.  Two of the pills I take are over the counter, and the other two are a mid-level pain medication.  I usually need that combo only once a day.  The second issue is sleep.  People with FM must get the best sleep they can in order to keep symptoms under control.  I use a CPAP machine to help ensure that I get effective, uninterrupted sleep.  Third, I exercise.  Moderate exercise has been proven to alleviate FM symptoms and keep them in check.  I am up to four hours of aerobic exercise a week.  And that's it.  That is how I do live with FM.  

Five years ago I was unable to work more than 3 hours at a time.  Now, I can work an 8 hour day with no problem.  For someone who used to work 24 hours a day, this is a big step in the right direction.  I am hoping that by losing all my extra weight, I will be able to take that last step toward working regular shifts again.


3 comments:

  1. Chronic pain that transmits the disease makes our defenses are so weak that the slightest movement, the pain grew much more; therefore, we turn to prescription drugs the doctor for health care as the narcotic drug opioids very good if used correctly.

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  2. You're very lucky to have a good doctor who understands FM. Unfortunately for me, I have had to endure with a family physician who although acknowledges the FM, she offers little comfort, understanding or genuine care towards my condition. I feel she labels me "the hypochondriac" or "difficult" patient, despite my most recent complaints all having been validated (diagnosed with a large thyroid nodule, Latent Celiacs Disease). I live in Canada and if you have a family doctor, you don't often have the ability to find another. Many families go without a family doctor because there are none taking new patients. I do not have the option to find someone else... Congrats on the blog, I will follow you on your quest for weight loss. I hope to learn a few things from your journey. Good Luck and all the best!

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  3. I just hate to hear about doctors who do not understand fibromyalgia. If you want to contact me I will give you some more information about medications, etc.

    destinedfor150@gmail.com

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