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Fibromyalgia Connection and Information

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to Midcoast ME U.S.A. . . . and Beyond


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Fibromyalgia or FMS is an often painful and debilitating condition that affects up to ten million Americans, as many as 95% of whom are women.

  • It may occur by itself (primary) or in conjunction with another illness (secondary), oftentimes an autoimmune disease such as sarcoidosis. (NOTE: The term "secondary" is misleading because even though the first condition may be alleviated, the fibromyalgia symptoms may remain.)

  • Its cause is unknown and there is presently no known cure, but symptoms may remit over time. Some believe that fibromyalgia is triggered in pre-disposed individuals by such traumatic occurrences as illness, physical trauma to the body from accidents or surgery, and/or acute emotional stress. (In my case, my fibromyalgia symptoms appeared just after I had knee surgery and a D&C with thirty days at a time when I was under tremendous negative stress at my job.) The most logical explanation put forth by some medical authorities regarding fibromyalgia and other autoimmune diseases is that their cause is likely a combination of genetic and environmental factors.

  • There is no medical test that will specifically determine that a person has fibromyalgia. Usually a medical history is combined with the specific complaints of the patient to make a final diagnosis.

  • There is no single medication that will alleviate the pain/discomforts of fibromyalgia. But there are medications and lifestyle changes that can help improve a person's quality of life.

  • The really good news is that FMS is not life threatening and no organ damage occurs in the course of the condition.

  • The other good news is that fibromyalgia is now a syndrome that is recognized by the Social Security Administration in determining Social Security Disability benefits. Ironically, while fibromyalgia is recognized, sarcoidosis has not been formally accecpted, so a person who has sarcoid with secondary fibro (like me) is more likely to qualify for Disability benefits by proving the presence of fibromyalgia. In my case, as soon as I presented such evidence to SSA, I was granted benefits. Coincidence? You decide.

  • I almost decided not to add this last fact about fibromyalgia because it is definitely NOT good news, but after giving it much thought and reading more about others with fibromyalgia, I feel it is really important for people to understand that although fibromyalgia itself does not kill, its debilitating and sometimes excruciating pain can indeed cause death. . . . in the form of suicide. I think it is important for others with fibro, for those who know and/or love them, and for the medical community to understand what can happen if the pain can't be controlled. It is a sad testimony, indeed, that a person must seek peace in death because they cannot find it in life where there are so many medicines that could improve their quality of life. I am so grateful that I have not yet suffered to that degree, but I have been close enough to that bottomless pit to understand. . . . .

Note: The above information has been compiled from a number of reputable sources that can be quoted upon request. Most of these sources will be listed in the "links" section of this page.

Definition & Explanation // Symptoms // Treatment Options // Resources, Organizations & Links

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Fibromyalgia or FMS (fibro-myalgia-syndrome) is a chronic pain/fatigue syndrome of unknown origin with no known cure.

  • "Fibro" denotes a relationship to fibers, while "myalgia" refers to pain in a muscle or muscles. Thus, fibromyalgia refers to pain in the fibrous tissue of the muscles.

  • Chronic conditions occur over a long period of time (not necessarily at the same level, perhaps even remitting at times).

  • Fatigue is not the usual tiredness that most people experience from too busy a lifestyle. It is an all consuming, body draining feeling that can not be understood by those who have not experienced it.

  • Fibromyalgia is not usually considered to be an actual disease but a syndrome, a set of symptoms which occur together.

  • "Unknown origin" refers to the fact that the cause of FMS is not known.



The NFRA (National Fibromyalgia Research Association) states that the most reliable symptoms in the diagnosis of fibromyalgia are "widespread musculo-skeletal pain and multiple tender points." They then list and diagram the major diagnostic criteria for FMS, which are summed up in a statement made in an article, "Fibromyalgia: Is There Hope for Chronic Pain?" that is published on "In 1990, the American College of Rheumatology released guidelines for diagnosing fibromyalgia, based on a history of widespread pain lasting longer than three months, combined with pain in 11 of 18 specific points called 'tender points' in muscular tissue."

Overall a myriad of symptoms may occur, including the following:

  • Muscular pain (And. . . up to 18 specific tender spots around the body)

  • Extreme Fatigue (Oh yes, this is a big one!)

  • Migraine-like headaches and facial pain including tooth complaints (TMJ is pain in the jaw)

  • Stiffness (Don't be still for too long or you will want to get out the WD-40)

  • Insomnia and sleep disturbances (Followed by morning blahs or "fibro-fog")

  • Depression/anxiety (explained to me as caused by a chemical imbalance from the fibro)

  • Leg cramps and/or restless legs (You'll know, believe me!)

  • Paresthesia/Numbness and tingling (Is that why I didn't know I was developing carpal tunnel from using the computer too much?)

  • Joint pain (Gosh, is it the sarcoid or the fibro that makes my joints ache today?)

  • Cognitive problems such as impaired memory and concentration, inability to cope/easily overwhelmed (Exactly what was I going to type here? I know it was important, but I just can't seem to remember....)

  • Irritable Bowel Syndrome (abdominal pain, bloating, constipation, diarrhea)

  • Genital/Bladder problems (including increased PMS in women or increased fibro symptoms at specific times in menstrual cycle; increased urination or urge to urinate)

  • Temperature sensitivities, both heat and cold (Yup, when it's over 70 degrees Fahrenheit I get claustrophobic)

  • Skin problems and swelling of extremeties (My beautiful wedding ring of two years just doesn't fit on most days)

  • Equilibrium dysfunction including lightheadedness, dizziness, balance problems (makes one clumsy and driving can be compromised when eyes don't quite want to "focus")

  • Hypersensitivity to light, sound, smells (never wear perfume anymore, many times I want total silence around me, and sunny days can be overwhelming)

  • Eye, ear and nose complaints (a variety of them)

  • Esophagus complaints (painful swallowing)

  • Pain in chest and shortness of breath (sometimes thought to be a heart attack)

  • Sore throat, swollen glands, low-grade fever, night sweats (the fever is my pet peeve, have gone out in short sleeves to walk the dog at night when it was barely 50 degrees Fahrenheit, and I felt "hot.")

  • Hypoglycemia (low blood sugar count) and intolerance to carbohydrates (hmmm?)

More about these symptoms can be found at: NFRA, "ACR Fibromyalgia Diagnostic Criteria", Fibromyalgia Symptoms, Web MD, "Fibromyalgia Health Center", and FibroCenter, "Common Fibromyalgia Symptoms".



The most common goals of any fibromyalgia treatment program are to: break the pain cycle, restore sleep patterns, and increase functional activity levels. There is no single medication or treatment that will relieve all the symptoms. Generally, a combination of methods specific to each individual's needs is tried. The main options presently available are: education, exercise, nutrition, and medications. Because of the chronic aspect of the symptoms, many individuals get frustrated when conventional treatment methods fail them and resort to trying one or more complementary/alternative treatments to relieve their symptoms and improve their quality of life. These include chiropractic manipulation, therapeutic massage therapy, acupuncture, herbal remedies, and various meditative/relaxation techniques. There is evidence that some treatment alternatives may be helpful in some cases.

I will outline some of the treatment methods that are suggested for individuals with fibromyalgia. Please remember that I am not a professional and am only relaying information I have found in my research. I have attempted to use only sources that appear to be reliable. I will provide links to many of these sources, so you may confirm the information yourself and decide whether a specific option may be one you wish to try. I strongly suggest that you discuss any such options with your medical practitioner before using it, as many have side effects that may need consideration.

Life-style changes can only occur after a you are educated/counselled about fibromyalgia and its implications. You will then be able to make changes in sleep, nutrition, exercise, and medications that may be helpful in conserving energy and minimizing pain. Reducing stress and improving coping skills may also reduce painful symptoms. It is important to understand that some activities may no longer be possible as long as symptoms persist and that some other activities may need to be altered and performed more slowly. Pacing oneself is a very important aspect of maximizing quality of life with fibromyalgia. Plan ahead and take your time, or you may pay the price of decreased energy levels and increased discomfort levels for several days after a long or arduous activity. You also may find that joining a support group is beneficial to your emotional well-being. Talking with others who share your symptoms and concerns can be very cathartic.

A treatment for fibromyalgia that I can not classify in any of the other groups, but feel is important to mention, is heat treatment. It seems so simple, but for me it is often the most effective treatment I can use, especially for muscle spasm type pain. The methods of heat transmission are varied, including showers, baths, hottubs, whirlpool spas, heating pads, hot water bottles. There is even the added bonus that if you find heat an effective treatment for you and your medical practitioner will support you in this assessment, you can take a tax deduction on the purchase/installation of a spa/hottub at your home.

Exercise includes physical therapy and a moderate exercise routine that may include stretching, toning, and light impact exercises such as walking, bicycling, and swimming. Your physician and a physical therapist can help you develop a program that is specific to your particular needs. It is suggested that moderate exercise may be one of the most beneficial treatments in relieving fibromyalgia discomfort. But it should be noted that too much exercise may increase pain levels.

The benefits of nutritional changes for a person with fibromyalgia are harder to define. Many suggestions have been made, depending upon what you read, and just as many have been said to have no effect (or even a negative effect) on the symptoms. Vitamin/mineral supplements of various types have also been suggested with varying levels of proof about their efficacy. The combination that seems to be most likely to be helpful is a combination of Vitamin B complex/Vitamin C. Together these vitamins boost energy levels in the body (I take this combination on a regular basis). Some medical authorities also recommend calcium/magnesium supplements. The calcium is needed to balance the magnesium, which is needed by the body for proper muscle functioning and relief of muscle pain/spasms. If you do consider taking any calcium supplements, be sure that your calcium levels are not already elevated due to your sarcoidosis. Hypercalcemia is fairly common with sarcoid and can result in serious medical problems if not properly treated. Another combination involving magnesium that has been both suggested and refuted in resources I have reviewed is magnesium/malic acid. In general, the sources that refute the need for additional magnesium state that individuals with fibromyalgia do not usually have a magnesium deficiency, nor do they benefit from a magnesium supplement. It is also recommended that intake of caffeine, alcohol, and nicotine be restricted or completely avoided, since these substances tend to interfere with sleep and energy patterns.

Medications are many and often uncertain in their effectiveness to control pain and ease other symptoms of fibromyalgia. The most common medications are the tricyclic anti-depressants. For fibromyalgia relief they are administered in low doses and can alleviate minor depression as well as fibro pain, and assist in more restful sleep patterns (these medications did not help me). The most common of these anti-depressants is Elavil (amitriptyline). Two other drugs that seem to be frequently prescribed to individuals with fibromyalgia for pain alleviation are Ultram (tramadol), which is an analgesic like Tylenol or Darvon, and Effexor (venlafaxine), which is an SSRI like Prozac, Zoloft, and Xanax. I have not read the same positive results regarding these two medications that I have with Elavil. Some sources recommend the use of non-steroidal anti-inflammatory drugs such as ibuprofen or aspirin, while others state that they are not very beneficial. Muscle relaxants such as Baclofen, Flexeril, and Soma may be prescribed to relieve muscle spasms/cramps. Ambien is the most often used sleep medication for fibromyalgia because it helps individuals to stabilize their sleep patterns and does not cause a "hangover" the next morning (the common "fibro-fog" and lack of energy in the mornings can be debilitating enough). For a lengthy list of medications used for various fibromyalgia symptoms go to the NFRA Website, "A Guide To Fibromyalgia Medications"

Alternative treatments for fibromyalgia symptoms have been tried by many who find no relief from conventional methods. The most positive alternative treatments I have researched are acupuncture and biofeedback. There appear to be some very positive evidence that these methods of pain control can be reasonably effective in some individuals. Other treatments such as massage therapy, aroma therapy, relaxation techniques (such as meditation), biofeedback, yoga, tai chi and chiropractic manipulation may provide some temporary relief for some individuals, but their benefits for fibromyalgia patients are not well documented.

I have read much about herbal remedies of various types. Although many individuals maintain that certain herbals have benefitted them, there is very little scientifically acceptable proof that these "natural medications" really do help. The most important thing I learned during my research of herbal remedies is that a person must be just as careful in taking them as he/she would be in taking any conventional medication. They all may have some side effects and/or may be detrimental to certain individuals with specific conditions. For instance, echinacea and other herbals that help to enhance the immune system could be detrimental to individuals with autoimmune diseases because in these individuals the immune system is already overactive (fibromyalgia is presently listed among the more than 100 known autoimmune diseases). Another herbal, ginkgo biloba, may help improve circulation and brain function, but it is also a blood thinner. The only herbal that I have found that has been researched enough to provide reliable proof of some level of efficacy with relatively few/minor side effects is St. John's Wort. It helps some individuals with mild depression.

I would strongly suggest that anyone considering the use of herbals should consult with an herbal expert before beginning any such regimen. Medical doctors are not usually very knowledgeable about herbal remedies and will likely discourage what they don't understand, so find someone whose area of expertise is herbal remedies. Be sure to ask about ALL possible effects of the remedy you want to try, both positive and negative.

In cases of severe fibromyalgia pain that is not well controlled by conventional or alternative therapies, your medical practitioner may recommend and refer you to a pain clinic. Pain clinics will provide you with very specific instruction about coping techniques to deal with the pain.

Personal Note: From my research and personal experience, some of the therapies/treatments that seem to indicate the most positive results are: stress-reduction, heat, moderate exercise program, a Vitamin B Complex/Vitamin C supplement, and acupuncture.


Don't forget to visit the second page of this fibromyalgia section:

Fibromyalgia Books, Organizations, Links, Awareness


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Compiled by Chris Townsend, >Sarcoid Connection
Last Modified on November 28, 2012