Circle of Life 2 MOST WIDELY PRESCRIBED PHARMACEUTICALS FOR FMS Partial List Relafen(nambumetone): this is a NSAID that is often well tolerated because it is absorbed in the intestine, sparing the stomach. Benedryl (dyphenhydramine): a helpful sleep aid/antihistamine which is safe in pregnancy. The starting dose is 50 mg 1 hr. before bed. Increase as tolerated until symptoms are controlled or 300 mgs. About 20% of patients react with excitation rather than sedation when taking benadryl. Desyrel (Trazadone): a tricyclic antidepressant that helps with sleep problems. It must be taken with food. Atarax (hydroxyzine HCl): suppresses activity in some areas of Central Nervous System to produce an anti-anxiety effect. This antihistamine and pain-reliever may be useful when itching is a problem. Elavil (amitriptyline): this tricyclic antidepressant (TCA) is cheap and useful. It generates a deep stage four sleep. Most patients will adapt to this med after a few weeks. It can cause photosensitivity, water retention and morning grogginess. It often causes weight gain, dry mouth, as well as stopping the normal movements of the intestine. It may cause Restless Leg Syndrome. Wellbutrin (bupropion HCl): is a weak Specific Serotonin Reuptake Inhibitor (SSRI) and antidepressant that is sometimes used in FMS/MPS in place of Elavil. It can promote seizures. Ambien (zolpidem tartate): hypnotic--sleeping pill, for short-term use for insomnia. There have been reports of serious depression. Soma (carisoprodol): acts on Central Nervous System to relax muscles, not on the muscles themselves. It works rapidly and lasts from 4 to 6 hrs. It helps detach from pain, and modulates erratic neurotransmitter traffic, damping the sensory overload of FMS. Flexeril (cyclobensaprine): this medication can sometimes stop spasms, twitches and some tightness of the muscle. It is related chemically to Elavil. It generates stage four sleep, but it may cause gastric upset and a feeling of detachment from life. Sinequan (doxepin): tricyclic antidepressant and antihistamine. It can produce marked sedation. This medication may enhance Klonopin, but can reduce muscle twitching by itself. Prozac (fluoxetine hydrochloride): anti-depressant that increases the availability of serotonin, useful for those patients who sleep excessively, have severe depression and overwhelming fatigue. Ultram (tramadol): non-narcotic, Central Nervous System medication for moderate to severe pain, in a new class of analgesics called CABAs--Centrally Acting Binary Agents. It has a "low-abuse potential", so doctors may prescribe it more liberally than other strong pain-killers. It is not a controlled substance. Reports say it doesn't work well on an "as needed" basis--you have to take it regularly for best benefits. Many people said it brought more alertness for longer times, and less "fibrofumble" of the fingers. It can lower the seizure threshold. It is having good success migraines. Xanax: (alprazolam): an anti-anxiety medication, that may be enhanced by ibuprofen. It must not be used in pregnancy.It enhances the formation of blood platelets, which store serotonin, and also raises the seizure threshold. When stopping this medication, you must taper it very gradually. EMLA: a prescription-only topical cream, that may help cutaneous TrPs. It is a mixture of topical anesthetics. Pamelor (nortriptyline): this is used to help sleep. but some people find it stimulating, and must take it in the morning. Some reports of depression with use. Klonopin (klonazepam): anti-anxiety medication and anticonvulsive/ antispasmodic. It is useful in dealing with muscle twitching, Restless Leg Syndrome and nighttime grinding of teeth. Buspar (buspirone HCl): may improve memory, reduce anxiety, helps regulate body temperature, and is not as sedating as many other anti-anxiety drugs. Zoloft (sertraline): this is an SSRI and antidepressant, and is commonly used to help sleep. Tagamet, Zantac, Prilosec, Axid: often used to counter esophageal reflux. Tagamet may increase stage 4 sleep, and enhance Elavil. Paxil (paroxetine Hcl): serotonin and norepinephrine reuptake inhibitor, and may reduce pain. It should not be used with other meds that also increase brain serotonin. Suggested dosage is 10 mgs (half a scored tablet) mornings--may cause insomnia. Effexor (venlafaxine HCl): antidepressant and serotonin and norepinephrine reuptake inhibitor. Suggested trial dosage is 25 mg, taken in the morning. Food has no affect on its absorption. When discontinuing this medication, taper off slowly. Inderal(propranolol HCl): sometimes helps in the prevention of migraine headaches, although blood pressure may drop with its use. Antacids will block its effect, and should not be used. Hismanol(astemizole): this is a potent antihistamine often given for allergies. Do not take at the same time as ketaconazole. Librax: for Irritable Bowel Syndrome. It is a combination of antispasmotic plus tranquilizer that helps modulate bowel action. Diflucan (fluconazole): this antifungal penetrates all of the body"s tissues, even the Central Nervous System. Very short term use can be considered if cognitive problems and/or depression is present, and yeast is suspected. Yeast may also be at the root of irritable bowel, sleep dysfunction (muramyl dipeptides from bowel bacteria induce sleep), and other common FMS problems. Potaba (aminobenzoate potassium): used to diminish fibrotic tissue. Travell and Simons recommend it for stubborn cases of myofascial pain syndrome. Do not use with sulfa. The suggested dosage 500 mg tid for 5 months. It will counteract guaifenesin. Quotane: this topical prescription ointment is helpful for TrP relief in close-to-the-surface areas not reachable by stretching. TrPs that refer burning, prickling or lightning-like jabs of pain are likely to be found in cutaneous scars. Imitrex (sumatriptan): this is an injectable solution that will not prevent migraines, but it is effective for migraine pain in most cases. Works on serotonin release instead of blood vessel spasm, and may provide relief in less than 20 minutes. It works very fast, but should not be used within 24 hours of ergot (a common migraine drug) medications. It can increase blood pressure. It may cause spasm of muscles in jaw, neck, shoulders and arms. Also reported were tingling sensations, rapid heartbeat and the "shakes". A pill form of this may be approved soon. DIAGNOSTIC CRITERIA FOR FMS DIAGNOSITC CRITERIA Fibromyalgia Syndrome FMS According to the 1990 American College of Rheumatology Guidelines To meet the criteria, patients must have A. Widespread pain in all four quadrants of their body for a minimum of three months. B. At least 11 of the 18 specified tender points. Although the above criteria focuses on tender point count, a consensus of 35 FMS experts have recently determined that a person does not need to have the required tender points to be diagnosed and treated for FMS. This criteria was created for research purposes and many people may still have FMS with less than 11 of the required tender points as long as they have wide spread pain and many of the common symptoms associated with FMS. THEY INCLUDE Fatigue Sleep disorder Jaw Pain TMJ DYSFUNCTION Post-Exertion malaise and muscle pain Numbness and tingling sensations Skin sensitivities Irritable bowel Chronic Headaches (tension type or migraines Cognitive or memory impairment Morning stiffness Menstrual cramping and PMS Dizziness or impaired coordination WHEN YOU KNOW SOMETHING IS GOING WRONG INSIDE YOUR BODY AND YOU KEEP HAVING THE SAME OLD DIAGNOSIS OF FMS - YET YOU KNOW YOU HAVE MORE THAN FMS WHAT DO YOU DO? Some Hints on how to talk to your health care practitioner about this. 1. Be honest and forthright and tell your health care practitioner that you honestly feel that something else is going on inside your body. Ask him or her to check you out thoroughly and tell them what YOU think the problem might be - which area. 2. Don't over emphasize your symptoms, your pain, etc., or the physician will tend not to believe you. 3. Don't underestimate your symptoms in order to appear brave, valiant or strong. 4. Talk opening and logically about your symptoms. Tell your doctor that you think you may have one or more of the following because of how you feel. This is important because FMS is often used as a waste basket diagnosis. You may have FMS, but you may also have a more serious, more painful, and more life threatening illness which is the primary cause of secondary FMS. Or you may have primary FMS and your feelings may be wrong, but at least your mind will be at rest and you will KNOW what you are dealing with. 5. Make sure that you have the proper blood work tests, that you have a full metabolic work up, that your gallbladder, bowel, adrenals, kidneys and liver are functioning properly. If you suspect that you have more serious back pain, ask for an MRI and a referral to a neurologist who is qualified to assess your back pain and to evaluate your problems and start treatment if required. 6. Work with your physician. You may want immediate relief from pain but sometimes you have to try out various medications before you can find one which helps, especially with pain. Good medical practitioners don't just prescribe pain pills without knowing the extent of the damage, or the severity of the pain and/or disease or syndrome. If you run to a doctor constantly expecting full and completely pain relief, you run the risk of being perceived as a person who just wants to take narcortics and will not work with your doctor in order to feel better. If they suggest that you exercise, as most of them do, follow their advice, and if they suggest that you lose weight because of back pain, make the effort. Your doctor is NOT a miracle worker and each one of us has to do our part to try to get well. 7. Talk freely about your discouragement, how you react to your pain, and what is happening to your life in general. Your doctor is not a mind reader and he or she needs to know how you are handling your disease or health problem. If you admit to going through a lot of stress and you are finding that it is making you worse, then learn how to handle stress. Learning to cope with a chronic illness is all about learning to help yourself. Your doctor cannot do it all, and you owe it to yourself, your family and friends to do the best that you can do to help yourself minimize the pain and symptoms. 8. Take your pain relief for the RIGHT REASONS. Do not take it as a coping mechanism for this is the first step towards dependance on narcotics. If you take a pain pill BEFORE you have a pain, because you are going shopping, or Aunt Sally is coming to read you the riot act, or for any emotional coping mechanism, you are doing exactly what an alcoholic does when they reach for a drink. Certainly pain medications are required, but bear in mind that they all have side effects and just as a person who is enbrieated, often the person on high doses of pain medications will declare that they are not fuzzy headed because of the medications when in fact they are. Taking medications responsibly not only HELPS YOU, but it helps the FMS patient coming after you because many doctors are refusing to give pain support because of people who abuse pain medications. It makes it harder on the rest of the population. 9. If you go through the Wellness Train Plan and truly want to feel better, and stick to the plan, you will, in time, feel better than you have felt for a long time. But also bear in mind that Fibromyalgia to date, is incurable. There have been reports of sudden and spontanious remissions but they seem to be few and far between. 10. And, there have also been reports of misdiangosis of FMS, that people do not havethis but that the symptoms of the primary disease have been overlooked due to the WORD FMS written and engraved in stone in our medical records. REMEMBER that it is downright dangerous to ASSUME that every symptom you have for the rest of your life is due to Fibromyalgia! WHEN YOU ARE LABELLED WITH THE DIAGNOSIS OF FMS AND YOU KNOW SOMETHING ELSE IS GOING ON BECOME PROACTIVE AND BE YOUR OWN HEALTH ADVOCATE Patient Doctor Communication The Ties that Blind We as intelligent health consumers, should use a primary physician who provides care that is scientific, considerate and compassionate. We must learn to take an active role in dealing with health professionals. We should try to understand the nature of any health problems we have as well as knowledge of the mechanisms and potential hazards of treatment. We should not hesitate or be reluctant or afraid to ask questions or request consultations for complicated problems. Effective communication is the key. Try to present a detailed and well-organized account of present symptoms and relevant past history. It may help you to draw up a list to guide your presentation. If there is more than one problem, start with the most important one. If you have a special concern, bring it up at the beginning of your visit. Write down a list of your medications and dosages. Many patients forget what they are told so perhaps a tape recorder might be helpful (with the doctor's permission). We know that physicians know much more than we do about medicine but that does not make them good communicators. They may be authoritarian or even patronizing. We do not have to accept this behavior. We have the right to be equal partners in our care and to get a clear explanation of the physician's findings and proposed treatment. There is no good reason why a physician cannot provide this. If you do not understand something, ASK! Try to make sure that any feelings of fear, embarrassment, or even resentment not be allowed to create a wall between you and your physician. Use these feelings productively by sharing them with the physician. Do not let fear or embarrassment stop you from mentioning a symptom or a problem you have. If you have doubts about a certain diagnosis or treatment, voice them. Be receptive to referrals and in turn comfortable enough to ask for one. The best approach is to select a doctor who makes sensible and cost effective recommendations without prodding. Questions can then be used to enhance your understanding rather than trying to out think your doctor. When telephoning your doctor, remember that your time and his or her time is valuable. Before calling, take a moment to organize your thoughts and to make sure that you can explain what your problem is, when it began, and if there is pain, and if so, what kind. Try to decide for yourself if the problem is urgent. Before calling, write down a one sentence description of your problem, your reason for calling, a symptom list, and no more than three questions that you may have. Many times physicians have their receptionists and nurses trained to assemble information. After talking with them, if you still believe that it is vital that you speak personally to the doctor, now is the time to ask. Keep a pencil and pad handy for any instructions. Have the number of your pharmacy handy. Remember that good medical care should be a partnership between patient and physician. COPING WITH PAIN AND CHRONIC ILLNESS 1. One of the best way to cope with chronic pain is distraction. Disassociation from your pain, distracting yourself with a project will not lesson the pain, but it will take your mind off it. Living and breathing illness will make the symtoms worsen in time and will also disassociate your from your family. Nobody wants to hear about sickness as the focal point day after day. 2. Helping somebody else in pain is another way to disassociate yourself from your own problems and discomfot. But before you do this, work on the coping strategies yourself, because you cannot teach what you have not learned to apply yourself and do it convincingly or well. All you have to do is visit a pallative care unit, or a children's ward to understand that there are so many people worse off than we are. Just think of the rewards of helping a sick child learn to cope with pain! 3. Volunteering at a hospital, walking that extra stretch in a mall, making that special supper, taking an elderly lady around a mall in a wheel chair so that she can enjoy shopping, will show not only others but yourself as well, that you are capable of going the extra mile. 4. Starting a Wellness Train Support Group in your area would be another way to take the focus off the negative, and your own problems, and to reach out and help others through example, education, encouragment and love. You will be amazed at how much doing things for others will keep your own pain in the background. 5. Learning to cope with stress through deletion of negativity in the mind, and through really thinking out problems instead of reacting with panic and flurried emotions, will go a long way to keeping you calm. Dwelling on slights and hurts of the past will only make YOU worse. The next time something stressful happens, say to yourself, "What is the worst scenario that can come out of this and have I the guts to deal with it?" You will be pleasantly surprised that you will be able to face anything that is thrown at you. The Lord does NOT give you more than you can handle, even though, admittedly it is sometimes a wearisome task. Meditation, prayer, exercise, eating properly, developing better sleeping habits, taking your supplements will all aid you in being able to face a crisis with logic and a calm mind. The Wellness Train Plan is designed for people with FMS. We, of all people, have a difficult time dealing with our illness, the primary reason being that we know that we will probably suffer from it for the rest of our lives. A sobering and depressing thought. By the same token, if you take it as a gift, and realize how many wonderful people you have met through the auspices of this dreadful disease, and how much you have learned, developed in character and fortitude, it's not as bad as you think it is. Now that you have reached the end of the plan, we sincerely hope that you will apply it with patience and dedication. Reember this one phrase. YOU CANNOT KNOCK IT UNTIL YOU TRY IT. AND YOU HAVE TO GIVE IT AT LEAST ONE YEAR. Usually the best benefits come in the third year of sticking to the plan. It took a long time for your body to get sick, and it will take just as long, if not longer for it to feel better. 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