FIBROMYALGIA SUPPORT By Dale Alsager, D.O., Ph.D. FACOFP A Patient Information Publication by the Country Doctor Clinic What is Fibromyalgia (F MS)? Fibromyalgia is a syndrome of widespread pain (myalgia) and other symptoms, including problems sleeping (insomnia), fatigue, stiffness, mood disturbance, irritable bowel, headaches, bladder spasms, memory def icits, visual field defects, occasional numbness and tingling sensation in extremit ies. Fibromyalgia is NOT a psychiatric ailment. Nor is it a life t hreatening condition. But it can be a real nuisance interfering with work, planned commit ments, sleep, and family relationships. It IS a real and legitimate medical condition that can be severely debilitating if untreated. Although we do not know the cause of Fibromyalgia, we do know of major aggravating factors. Early aggressive treat ment will maximize an individual’s function at home, in family, and at work. While Fibromyalgia is not life threatening, it is chronic and can jeopardize family, marital and employer relationships. Fibromyalgia is a family condition because its effect and treatment impacts everyone in the patient’s environment. Strong support from friends, family and employers makes a big difference in the success of treatment, and maximizes the affected loved one’s function. The Diagnosis of FMS A diagnosis of FMS is not made easily or taken lightly. At Osteopathic Medical Services, criteria set by the American College of Rheumatology in 1990 (Rheumatologists are doctors who study joint related illnesses) are used to determine if the patient has the condition or not. Because many other diseases can mi mic FMS, a definitive diagnosis often requires a minimum of three doctor visits. During these visits the following steps occur: 1) A comprehensive medical history: During the first visit to Dr. Alsager’s clinic, a detailed medical history w ill be taken. Has there been a severe trauma, an infection, a chemical exposure, or other possible incident from which your loved one’s symptoms seem to have started? Are there other family members with F ibromyalgia syndrome? What other diseases or ailments does your loved one have that may co- exist with Fibromyalgia? These are examples of many questions we explore during the medical history. 2) Screening blood tests: Although fibromyalgia does not have a specific test, it is important to rule out other conditions, which may masquerade as FMS. These tests at Osteopathic Medical Services are comprehensive and include a blood chemistry profile, blood cell analysis, tests for thyroid function, and other rheumatological conditions such as Rheumatoid Arthritis, Lupus, chronic inf lammation, collagen vascular diseases, anemia, infections, and others. If there are risk factors for, or evidence of exposure to, HIV, TB, Hepatitis, Lyme Disease, Microbacteria Fermentins Inconitas (exposure to Gulf War veterans), or Epstein-Barr virus, these tests may also be added. 3) A comprehensive physical exam, including a detailed muscular-skeletal alignment check of the spine, pelvis, sacrum, extremities and cranium is necessary. Detailed mapping of FMS tender points and differentiation of FMS tender points from Chapman’s Sympathetic Reflex Points and commonly occurring muscle trigger points, is essential for an accurate diagnosis of FMS. The diagnosis can only be made whe n the following clinica l crite ria are confirme d: 1) Widespread pain (pain that “moves around”) for more than three months. 2) At least 11 out of 18 FMS pain tender points present. 3) Unexplained fatigue for more than three months (with some patients a period of six months is used by Dr. Alsager). 4) Persistent difficulty with sleeping (insomnia) for a period of more than three months. 5) An association with other complaints such as irritable bowel, “bra in fog” (memory difficulties), visual defects, depression, irritable bladder, periodic numbness, tingling of the extremities (hands, arms, feet), chemical sensitivities, recurrent episodes of what appear to be sinus infections, headaches, and throat irritation from excess mucous drainage. Fibromyalgia syndrome can often co-exist, or be confused, with other conditions, which need to be diagnosed and treated separately. These conditions include : Raynaud’s Disease (coldness of the hands and f ingers), allergie s, anxiety disorders, panic attacks, depression, headaches, irritable bowel, stomachaches, constipation, stomach cramps, bladder infections, mitral valve prolapse, infectious mononucleosis (Epstein-Barr virus), angina, vertigo, multiple sclerosis, temporal mandibular joint dysfunction, jaw click, bruxism (teeth grinding at night), adrenal gland disorders, thyroid disorders, major muscular skeletal misalignments, arthritis, gout, and infections. The Treatment Plan Once a diagnosis has been established, Dr. Alsager works aggressively with patients to develop a comprehensive treat ment plan. While a cure is yet to be discovered, Dr. Alsager’s patients experience significant symptomatic relief with treatment. It is important that the patient be encouraged and assisted by their support network to have regular clinic visits, particularly in the early stages of treatment until conditions stabilize. A significant number of Dr. Alsager’s FMS patients no longer meet the criteria for FMS after one year of treat ment. Fatigue, pain, and lack of sleep are the primary symptoms in fibromyalgia that lead to dysfunction at home and work. We work very hard to get these symptoms under control as quickly as possible. Twe lve reasons for Fatigue in Fibromyalgia 1) Lack of consistent adequate sleep (insomnia). 2) Low ATP (a chemical that delivers energy to cells) levels in muscle tissues . 3) Autonomic nervous system dysfunction (contributes to excess secretion of mucous, chronic sinus drainage to throat, memory def icits, and urinary system changes). 4) “Brain drain”, or “brain fog” (neurotransmitter imbalance caused by chronic stress and biochemical dysfunction). 5) Constant pain. 6) Depression. 7) Hormonal problems (caused by dysfunction of key glands in the body) . 8) Poor use of oxygen by body tissue. 9) Smooth muscle dysfunction in blood vessels which results in poor blood flow to muscle beds, contributing to build-up of prostaglandin resulting in muscle pain and fatigue. 10) Constant muscle movement —a natural pain avoidance behavior. 11) Depletion of B12 and folic acid levels at the cellular level. 12) Co-existing viral infections such as Epstein Barr (Infectious Mononucleosis) . Reminders for FMS Significant Others and Family Supporte rs 1) You are not responsible for your loved one’s fibromyalgia. 2) You can’t cure the fibromyalgia. 3) You do not cause, nor are you responsible for flare ups-ups. 4) FMS is not a punishment for you or your loved one. 5) You can help heal f ibromyalgia and significantly increase the function of your loved one, by following a few simple steps. Here’s how you can help 1) Watch for signs of pain and be sensitive to your loved one’s needs . 2) Listen to complaints and be understanding. 3) Remember that the pain, fatigue, and discomfort are real and there is a physiological basis for your loved one’s suffering. 4) Check with your loved one regarding sensitivity to colognes, lotions, hair spray, and other chemicals. Many FMS patients develop sensitivities to these fragrant chemicals and quietly suffer. 5) Learn your signif icant partner’s body, explore with massage. Offer to massage as often as you can. Stick with very light techniques and avoid the FMS tender point regions. Direct pressure on these is often very uncomfort able, can refer pain to adjacent regions, and may result in increased pain. 6) Help maintain a pain log. Note what aggravates the pain, and what relieves the pain. Note what time it is worse and what time it is better. Such a log is very helpf ul in establishing trends useful in managing the symptoms and optimizing function. 7) Accompany your loved one to Dr. Alsager’s clinic whenever possible. Attend seminars, courses, support group meetings and learn as much as you can about FMS. 8) Explore alternative treatment strategies and do not hesitate to ask Dr. Alsager about alternative treat ments. Osteopathic Medical Services has conducted clinical trials on numerous treat ments for FMS. Dr. Alsager and his staff are relentlessly researching new ideas and treat ment strategies. 9) “Connect” with your partner. Assure her/him that she/he is not alone —reassure, reassure, reassure. 10) Help manage stress: Emotional stress makes FMS much worse. Prioritize lifestyle goals and responsibilities to allow a shift of responsibilities away from the affected person. Do not say: 1) “It’s not all that bad” 4) “I know what you’re going through” 2) “You have to learn to live with it” 5) “You look fine” 3) “I’ve hurt like that before” 6) “There’s nothing w rong” 7) “Maybe you shouldn’t have done that” 11) Shift from high gear to low gear. Plan to do less and enjoy more. Do not take on new responsibilities without thoroughly exploring them w ith your partner. Provide time in your schedule daily to assist your partner. 12) Learn what activities relax and relieve symptoms and schedule them daily. 13) Re-define relationships. Put family needs first. Work, money, education, travel, and others are secondary. 14) Plan special getaways and holidays. Remember to do the “little things” that create and re-create positive moments, memories, and enhance emotional support for you and your loved one. 15) KEEP YOUR SENSE OF HUMOR. FMS is not a fatal disease, but it can be a threat to your happiness and relationship if you allow it. Recognize it is scary facing a chronic illness alone. You have an opportunity to be a strong supporter and help your partner face this illness together. FMS supporte rs have a common bond—they all love a pe rson with FMS. What type of supporters are t here: Fibromyalgia supporters can be categorized. 1) The Invisible Supporter: This type of supporter takes a selfish approach and sees fibromyalgia as “someone else ’s problem”. They are invisible. They are not there when needed. They do not assist with the shopping. They have “something else more important to do”. They immerse themselves in their work, other relationships, and become not involved. Invisible supporters are also likely not reading this publication. 2) The Disassociated Supporter: This is the person who knows something is wrong but tends to diminish or deny the problem. They believe it will just go away in time. They find it very difficult to deal with any new challenge. They use denial of FMS as a coping mechanism. Disassociated supporters are looking for a quick cure so things will be like the “good old days”. 3) The Impatient Supporter: This supporter recognizes that there is a problem and even tries to understand the problem, but the expectations are unrealistic. This supporter is often disappointed with treatments and outcomes when they fail to cure. When things are going well the impatient supporter is happy, but during the bad times, when fibromya lgia “flares”, there is a lot of frustration, negative thinking, and lack of support. The impatient supporter often expects the person with FMS to always be a 4) The Over-Easer Supporter: This supporter is easy to please and tries very hard to help the loved one. The skills are there but the confidence needs more work. The over-eager supporter has difficulty appreciating and enjoying good times because of worries, fears, and insecurities about possible upcoming bad times. This type of supporter has a lot of potential that needs development. 5) The Encouraging Supporter: This type of supporter encourages the best possible performance from the person w ith fibromyalgia. This supporter puts all the positives together, works hard, studies fibromyalgia, and recruits new strategies. The encouraging supporter sometimes criticizes, however tries to be in control, which includes always trying to improve on something or make it better. This type of supporter does not fully accept fibromyalgia because there is always t hat uncontrolled element, its chronicity, that can’t be controlled in spite of the encouraging supporter’s best efforts. 6) The Accepting Supporter: This type of supporter is a genuine teammate and is an ideal partner. The teammate is secure and accepts the fibromyalgia for what it is. Teammates play the game together to “win”. The accepting supporter is very open to communication on how to improve. The supporter and the fibromyalgia person complement each other. The good is accepted with the bad and this supporter offsets the bad days by providing the needed help. Can you identify the category into which you fit? Can you do better? Even if you are already an “accepting supporter” you can always be a better teammate. Continue to explore and improve. Hints for Fibromyalgia Supporte rs 1) Learn to identify bad days early and have a positive plan of action ready. 2) Help evaluate treatments and help learn what works best and what does not. 3) Reserve and schedule quality time for each other. 4) Help accept and define limitations on daily activities and work demands to avoid flare-ups. 5) Re-assure your affected loved one often. 6) Be f lexible and ready to make alternative plans, particularly when flares occur unexpectedly. Be accepting of these days and avoid bitterness and disappoint ment whenever possible. 7) Learn when to intervene, and when to ask for help from Dr. Alsager. Rules for FMS supporte rs 1) Love unconditionally. 2) Accept fibromyalgia as part of your partner. 3) Make a commit ment to understand how f ibromyalgia affects both of you and learn to adapt. 4) Keep a sense of humor. Remember to have fun and enjoy each other in spite of fibromyalgia. 5) Be grateful and appreciate your partner for what she/he is able to do. 6) Enjoy each other w hether there is a flare-up or a stable baseline. Modify activities to meet the circumstances. 7) Concentrate on the commit ment to be together and love each other in spite of the fibromyalgia. Reinforce this commit ment with your partner and reassure , reassure, reassure. 8) Remember—family first. 9) When times are tough and day is done, the greatest thing you can do is to turn to your partner and say, “I love you—and your Fibromyalgia”. Furthe r information and refe rence books he lpful to fibromyalgia patients and the ir loved ones can be obtained through Dr. Alsage r’s Country Doctor Clinic.
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