My mother has fibromyalgia. How can I help her?
Also, when should I know when to get her medical attention? What are the symptoms of the illness, and what can I do t o help her in everyday life? She is in pain constantly. Is there a certain diet she should be on? She has cut back on sweets due to her diabetes, but what else? Thanks in advance.
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1. WHAT IS FIBROMYALGIA SYNDROME?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 soft fibrous tissues in the body.
Most patients with FMS say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with FMS, and it shows up in people of all ages.
To help your family and friends relate to your condition, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply. While the severity of symptoms fluctuate from person to person, FMS may resemble a post-viral state. This similarity is the reason experts in the field of FMS and chronic fatigue syndrome (CFS) believe that these two syndromes may be one and the same. Gulf War syndrome also overlaps with FMS/CFS.
SYMPTOMS AND ASSOCIATED SYNDROMES
Pain - The pain of FMS has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.
Fatigue - This symptom can be mild in some patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.
Sleep disorder - Most FMS patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that most FMS 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. Patients appeared to spend the night with one foot in sleep and the other one out of it.
Sleep lab tests may not be necessary to determine if you have disturbed sleep. If you wake up feeling as though you've just been run over by a Mack truck – what doctors refer to as unrefreshing sleep – it is reasonable for your physician to assume that you have a sleep disorder. Many FMS patients have been found to have other sleep disorders in addition to the alpha-EEG, such as sleep apnea (as well as the newly discovered form of interrupted breathing called upper airway resistance syndrome, or UARS), bruxism (teeth grinding), periodic limb movement during sleep (jerking of arms and legs), and restless legs syndrome (difficulty sitting still in the evenings).
Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40 to 70% of FMS patients. Acid reflux or gastroesophogeal reflux disease (GRED) also occurs with the same high frequency.
Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 70% of FMS patients and can pose a major problem in coping for this patient group.
Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one quarter of FMS patients. However, a 1997 published report indicated that close to 75% of FMS patients have a varying degree of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.
Other common symptoms - Premenstrual syndrome and painful periods, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination can occur. Patients are often sensitive to odors, loud noises, bright lights, and sometimes even the medications that they are prescribed.
Aggravating factors - Changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to symptom flare-ups.
POSSIBLE CAUSES
The cause of FMS remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection (viral or bacterial), an automobile accident or the development of another disorder, such as rheumatoid arthritis, lupus, or hypothyroidism. These triggering events probably don't cause FMS, but rather, they may awaken an underlying physiological abnormality that is already present.
What could this abnormality be? Theories pertaining to alterations in pain-related chemical transmitters (particularly substance P, nerve growth factor, serotonin, and norepinephrine), immune system function (e.g. abnormally elevated levels of cytokines that form the communications link between your immunologic and neurologic systems), sleep physiology, and hormonal irregularities are under investigation. In addition, modern brain imaging techniques are being used to explore various aspects of brain function. The body's response to exercise, stress, and alterations in the operation of your autonomic nervous system (the one that operates in your peripheral tissues) are also being evaluated. Substance P and nerve growth factor are increased threefold and fourfold (respectively) in the spinal fluid of people with FMS, but researchers are working to figure out why these elevations exist. With regards to genetics, its role in FMS is also the focus of many investigations.
COMMON TREATMENTS
Traditional treatments are geared toward improving the quality of sleep and reducing pain, which means that a sleep study may aid with individualizing your therapy. Deep level (stage 4) sleep is crucial for many body functions (such as tissue repair, antibody production, and the regulation of various neurotransmitters, hormones and immune system chemicals). Therefore, the sleep disorders that frequently occur in FMS patients are treated first because they may be a strong contributing factor to the symptoms of this condition. Medications that boost your body's level of serotonin and norepinephrine (neurotransmitters that modulate sleep, pain, and immune system function) are commonly prescribed in low doses, such as amitriptyline, cyclobenzaprine and Cymbalta. Ambien, Lunesta, clonazepam, and trazodone are just a few of the medications that may be used to aid sleep. Ultram may help with the pain, although stronger opioids may be needed for treating moderate to severe pain. Muscle relaxants, anti-epileptics (such as Neurontin and Lyrica) and other drug categories may be prescribed as well. Each issue of Fibromyalgia Network contains information about new drug therapy options, as well as advice about how to make use of existing medications to minimize FMS symptoms.
In addition to medications, most patients will need to use other treatment methods as well, such as trigger point injections with lidocaine, physical therapy, occupational therapy, acupuncture, acupressure, relaxation/biofeedback techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or a gentle exercise program.
Want to learn about new treatments, as well as how to receive optimal care from existing medications? Become a Member of Fibromyalgia Network and receive the most up-to-date, patient-friendly publication available. For details, click here. To order by phone, call our toll-free number at (800) 853-2929.
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WHAT IS THE PROGNOSIS?
Long term follow-up studies on FMS have shown that it is chronic, but the symptoms may wax and wane. The impact that FMS has on daily living activities, including the ability to work a full-time job, differs among patients. Overall, studies show that FMS may be equally as disabling as rheumatoid arthritis.
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SELF-HELP STRATEGIES
Lifestyle modifications may help you conserve energy and minimize pain. Learn what factors aggravate your symptoms and avoid them, if possible. Get informed about your condition by becoming a Member of Fibromyalgia Network. Membership includes a 20-page quarterly Health Journal in which you will read about research findings as well as advice on coping with FMS. Most importantly, this professional publication contains regular input from the experts to keep you informed about new and novel treatment methods, as well as recommendations about how to incorporate them into your care. No ads, no fluff – just the info you need. As a Member, you will receive physician and support group referrals, discounts on back issues of the journal, free educational brochures, a chance to participate in surveys and submit questions for our Q&A Column, and much more! To join click here, or call our toll-free number, (800) 853-2929. A one year Membership is only $28/year in the U.S. This price includes shipping, handling and taxes. Other educational materials may be ordered from Fibromyalgia Network as well
