Abstract
My report is about Fibromyalgia Syndrome (FMS), an elusive, often debilitating illness affecting 2% to 4% of the population. Although it affects people of all race, status and ages it is mostly seen in women between the ages of 30 and 50 yrs old. However it has been seen in men and is being diagnosed in children and teenagers. I am a Fibromyalgia and CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) sufferer. These two illnesses oftentimes go hand in hand with one another.
FMS (fibromyalgia syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments and tendons--the fibrous tissues in the body. FMS used to be called fibrositis, implying that there was inflammation in the muscles, but research later proved that inflammation did not exist. FMNETNEWS).
Fibromyalgia is not contagious, nor is it a life-threatening one. There are no cures and right now all that can be done is to treat the symptoms and try to make life with pain a little more bearable. Learning to accept and cope with being in pain and not having energy is probably the most difficult aspect of the illness.
Although some of the experts say that Fibromyalgia is not genetic, those of us that suffer with it know otherwise. It seems to run in families and recently more research is being done to see if there is any truth to this. My Mom also suffers from Fibromyalgia, but she doesn’t have CFIDS.
To know Fibromyalgia(FMS), is to live it. I should know because I am a Fibromyalgia sufferer. Imagine an elephant sitting on you with all the tons they weigh, now imagine trying to get up with the elephant still on your chest. Or better yet, you know in cartoons say the mouse is trying to run away from the cat but he doesn't know the cat is holding his tail and he's just running nowhere? A lot of times I feel like life is moving past me and I’m missing out and I'm the little mouse thinking she's getting somewhere but really isn't going anywhere at all - the rest of the world is buzzing by, while I'm at a standstill - not really 'with it' sometimes.
The most difficult aspect of (FMS) for me is the lack of energy and the chronic fatigue I have. I have learned to deal with pain and at times I can even block it out. But I cannot block out the need for energy.
FMS (as stated in the abstract) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments and tendons--the fibrous tissues in the body. FMS used to be called fibrositis, implying that there was inflammation in the muscles, but research later proved that inflammation did not exist. (Basics).
There is a list of symptoms to fit the Fibromyalgia criteria. Probably the two symptoms that help diagnose someone with Fibromyalgia the most are the patient must have widespread continuous pain for at least three months. There also must be presence of eleven out of eighteen trigger/tender points and pain in all four quadrants of the body. “These are specific areas that are tender to the touch, especially in the neck, spine, shoulders, and hips.” (UMDNJ CFSWEB. You can refer to the diagram I have provided to see the trigger points.
“Fibromyalgia is different from other illnesses. Most conditions have a single set of series of lab tests that help confirm their diagnosis. This is not so with Fibromyalgia because it does not affect one particular type of cell or part of the body. Instead it is manifested by a myriad of what appear to be unrelated symptoms in an almost endless number of combinations.” (Armand 20)
Other Fibromyalgia symptoms include: fatigue, morning stiffness, trigger points, sleep disorder, anxiety, difficulty concentrating, depression, swelling, numbness, and tingling in hands, arms, feet and legs, headaches, migraines, IBS(irritable bowel syndrome), acid reflux disease, urinary symptoms, painful menstrual cramps, Raynaud’s syndrome (lack of heat in hands and feet), restless leg syndrome, dryness in mouth and eyes. (McIlwain 16).
Some other symptoms not mentioned, but that I and many others experience are dizziness, which has been found to be from Hypoglycemia (low blood sugar), and/or Neurally Mediated Hypotension (fluctuating low blood pressure). In order to rule out Hypoglycemia you have a Glucose Tolerance Test. Ways to deal with it are eating several small meals a day and making sure you keep your blood sugar up.
“Low blood pressure (neurally mediated hypotension) is common in many fibromyalgia patients. Many FMS sufferers also have CFIDS. Dr. Peter Rowe at Johns Hopkins University School of Medicine first discovered the connection between low blood pressure and CFIDS.” (Neurally mediated Hypotension). The test for NMH (Neurally Mediated Hypotension) is a tilt table test. During a tilt table test the patient is strapped on to a table and tilted to a 45% angle, and they monitor the blood pressure as well as the patient’s reactions. They give an I.V. as well in case a fainting spell needs to be induced.
For me I had no need for the medicine, they usually give you 45 minutes for your blood pressure to drop. It took my body 15 minutes before I passed out and got a positive result for NMH. This along with the trigger points and the sleep disorder were what gave a final diagnosis for Fibromyalgia.
A battery of tests are given for the doctors to rule out other diseases such as Lupus, Lyme’s Disease, Epstein Barr, Rheumatoid Arthritis, Multiple Sclerosis. I was first diagnosed with Lyme’s Disease, and went through three years of antibiotic treatment with little results. My doctor, my Mom and I think that from the Lyme’s Disease I ended up with Fibromyalgia.
Doctors are still unsure as to what cause Fibromyalgia. There are many speculations and theories being tested. Some of these include: “metabolic dysfunction, immune system disorder, illness or injury, prolonged stress” (Williamson 14) Two of the most popular theories though are a hormonal imbalance, a deficiency of seratonin, which causes the lack of 4th stage sleep and depression. “Most fibromyalgia patients have an associated sleep disorder called the alpha-EEG anomaly. Researchers found that fibromyalgia syndrome patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity.” (alpha-EEG).
Another is a problem with the neurotransmitters in the brain, the cause of Fibro-fog. “Neurotransmitters are electro-biochemical agents that cross the synapses between the nerves. They are the messengers that carry information back and forth between the body and the brain. Normally, neurotransmitters constantly inform the muscles about what they’re supposed to be doing, so their actions can be modified, as needed, but this is one of the functions that is disrupted by FMS.” (Starlanyl 10).
There are many things that aggravate Fibromyalgia and will throw a person into a flare-up. With Fibromyalgia it is a never-ending cycle of flares and remissions. Some of these factors include: “changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion can all contribute to symptom flare-ups” (Flare-ups). There are many treatment options and as I said before, there are no cures, but controlling the symptoms can help alleviate pain and symptoms.
The first thing that doctors want to do is to help a patient get into deep sleep so they wake up refreshed, which in turn will help the pain and the depression. Not only is symptomatic treatment needed, but emotional support as well. Psychotherapy is used to help the FMS sufferer deal with their emotions and the stresses involved with this illness. Many times a FMS sufferer will be put on an antidepressant. These antidepressants not only help with depression, but may also help with pain and sleep problems, usually found with the Fibromyalgia.
NSAIDS (Nonsteroidal anti-inflammatory drugs) such as Naprosyn, Flexeril, Relafen, or Ibuprofen (Advil) help with the pain experienced with CFIDS and FMS. If an FMS sufferer has the low blood pressure they can be treated with blood pressure medicines or beta-blockers.
“Sleeping aids, analgesics, or a combination of medications. Alternative methods include: aerobic conditioning, physical therapy, biofeedback, acupuncture, chiropractic care” (Skelly Intro) Also herbal remedies can be used. There is an experimental treatment discovered by Dr. Paul St. Amand, M.D. which uses Guiafenesin, an “inexpensive medication used in over-the-counter products for nasal congestion. But in his studies, Dr. St. Amand discovered that this drug, taken in proper dosage, is the first effective treatment reversing fibromyalgia, with no known side effects.” (St. Amand Intro)
Mild and monitored exercise, such as walking, stretching, or water aerobics can help as well, it gets the body moving and the blood pumping. Also a balanced diet and an elimination of foods that cause symptoms to be worse help. Too much is not good, over-exertion can lead to an exacerbation, or flare-up of the disease.
It is said that stress is a big factor in how a person feels. A person should reduce their exposure to physical or psychological stress. Having a chronic illness in itself is stress enough and the more stress one has, the worse their symptoms will become. (Natelson, Facing and Fatigue a practical approach).
While I did not discover anything new during my research about my illness, I’d like to share a few of the things that have worked for me. I am on Elavil to help get me into the fourth stage of sleep and to help my pain, I am on Celebrex, and Nexium for the acid reflux. Alternative treatments I have tried and have worked are mild acupressure and biofeedback. My worst areas are my knees, not so much pain but the weakness that causes them to buckle, the fatigue and the fibro-fog.
A Fibromyalgia/CFIDS sufferer’s lifestyle usually will have to change drastically to accommodate and help the treatment work. A slower paced life helps, but sometimes that means giving up dreams and goals. But this doesn't mean the end of everything, many people find hidden talents and new hobbies in 'slowing' down. This can be a good compensation mechanism, in losing something (previous lifestyle) and gaining another thing (new lifestyle, perhaps more inspiring and enlightening than the original). Like myself, I discovered my talent and passion for writing when I got sick. I also have become more understanding, compassionate, and empathetic towards others. I have my website and knowing that someone might read this and be spared all of the tests and hell I went through to get a correct diagnosis, makes it worth it.
Amand, Paul R. St. M.D. What Your Doctor May NOT Tell You About Fibromyalgia. Warner Books. NY, 1998.
McIlwain, Harris H. M.D. The Fibromyalgia Handbook. Henry Holt and Co. NY, 1996.
Skelly, Mari. Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome. Hunter House Inc. CA, 1999.
Starlanyl, Devin J. M.D. The Fibromyalgia Advocate. New Harbinger Publications, Inc. CA, 1998.
Williamson, Miryam Ehrlich. Fibromyalgia: A Comprehensive Approach. Walker Publishing Company, Inc. NY, 1996.
NJ CFS/FM Center - NJ CFS/FM Center
Fibromyalgia Network - Fibromyalgia Network
National Fibromyalgia Research Association - NFRA
