Date Dear Patient, The Arthritis Center is committed to diagnosing and treating patients with musculoskeletal complaints. If Fibromyalgia (FM) is your primary diagnosis, you will be diagnosed, treated and given information on how to best manage this condition. Most Fibromyalgia patients will be seen once or twice and then referred back to the primary care physician (your family doctor) for future treatment and prescription refills. We are providing you with this information so that you may easily transfer your care to the doctor you choose. We can answer your questions by phone and provide limited prescription refills until you arrange for another medical provider. It is important that you share with your primary care physician (family doctor or internist) the information we provide you about your diagnosis. This includes the following: A copy of your initial visit and subsequent clinic note(s), including any tests done at our site (we encourage you to keep a personal file or “chart” with your medical information regarding your care and test results); The attached Fibromyalgia Guide: a summary of what FM is, how is it treated, etc; o Guidelines for the treatment of Fibromyalgia; o Sleep Hygiene: information on better sleep; o Guidelines for the treatment of Pain and Sleep. These are “maps” you can use to evaluate your symptoms and how to best managed them; We are grateful for the opportunity to evaluate and treat you and wish you well. Sincerely, FIBROMYALGIA GUIDE DEFINITION: Fibromyalgia (FM) is a very common condition. It is sometimes called fibrositis or myofascial pain syndrome. Primary symptoms are widespread muscle and/or joint pains, marked fatigue and poor sleep. The pain is usually over “soft tissues” around or near joints, often over tender areas called “trigger points.” Many FM patients have been diagnosed with “chronic fatigue syndrome.” CAUSE: The cause is unknown. Some cases have no obvious trigger or “initial event.” In others, FM may be brought on by pain or trauma (such as car accident, back surgery or arthritis), stress (ie, death of a loved one), depression, poor health/fitness, or chronic insomnia (poor sleep). These events begin a vicious cycle of poor sleep, leading to more pain, then worse sleep, etc. The net result is a lowering of your pain threshold that increases your overall pain level. Hence, activities and simple things that never used to cause pain, now causes pain, stiffness and muscle soreness in the FM patient. Most of your pains comes from muscle spasm and pain around the joints (tendons). FM does not damage the joints or lead to deformity or disability. WHO GETS FIBROMYALGIA? FM affects between 5-7 million Americans. Over 80% of Fibromyalgia patients are female. The average age is between 30-50 years, but Fibromyalgia may affect the very young or the very old. FM may also secondarily affect those with other forms of “arthritis,” such as rheumatoid arthritis, lupus, and Sjogren’s syndrome. WHAT ARE THE SYMPTOMS? Most people with FM complain of “pain all over” - in the joints or muscles, in the upper and lower body, and both sides of the body. The intensity and sites of pain may vary day to day. Pain often affects the neck, shoulders, between the shoulder blades (upper back), low back or hips. Other painful areas include the elbows, knees, jaw or chest. The most painful areas are called “trigger points” or “tender joints” (see figure on next page) – these painful areas are near or around the joints and are due to muscle and tendon spasm. On exam, the joints are usually normal. FM patients often complain of severe fatigue, malaise, and joint stiffness that may for last hours. Also, chronic pain and poor sleep lead to fatigue and numerous other bothersome symptoms in FM patients. Sleep problems: may appear as problems falling asleep, staying asleep, waking up many times during the night (often with problems falling back to sleep), restless or jerking legs, or waking up very early in the morning. Most people with FM only sleep for a short period of time during the night and feel worse or more tired when they wake in the morning. Non-restorative or non-restful sleep worsens the pain and lessens the chance of normal sleep the next night. Poor sleep can cause more pain, fatigue, headaches, poor memory and even unexplained numbness. Many people with FM have poor sleep habits (eg, sleep hygiene). If you sleep badly, you will feel bad. If you sleep fair, you will feel fair. To feel great, you must sleep great! Other symptoms: Many people with FM will often have major fatigue and malaise and past or current complaints of migraine, headaches, irritable bowl syndrome (alternating diarrhea/constipation), premenstrual syndrome (PMS), chronic fatigue syndrome, depression, anxiety multiple drug allergies, unexplained numbness, chronic TMJ syndrome, restless leg syndrome, poor memory or concentration and problems with thinking (“Fibro-Fog”). Many of these symptoms are worsened by poor sleep. How is FM diagnosed? There is no diagnostic lab or test for FM. This diagnosis is easily made on the basis of a careful medical history and physical examination. X-rays and lab tests are usually normal and usually not necessary. Consultation with a Rheumatologist may to establish an accurate diagnosis and treatment plan. Once diagnosed, a treatment plan tailored to your specific needs. The following pages describe the key symptoms of FM, how FM is treated, sleep hygiene advice and how to manage poor sleep. Diagnosing Fibromyalgia Key Findings in Fibromyalgia Widespread pain Problems with sleep No joint swelling or damage Multiple tender Trigger points FM TRIGGER POINTS Other problems seen with fibromyalgia Chronic headaches Unexplained numbness Muscle and joints pains TMJ (Jaw) pain Depression Anxiety Irritable bowel syndrome Chronic sinusitis Sensitivity to many drugs Atypical chest pain Poor memory/ concentration Severe premenstrual syndrome Chronic fatigue 4 Cornerstones to FM Treatment : Pain Control Improved Sleep Stretching & Pool Exercise Treat Depression Treatment of FM: There is no single drug or treatment that can cure FM. A combination of treatments is necessary to help this condition. The 4 cornerstones of treatment are: 1. Pain Control: There is no single pain pill that will stop the pain. Pain pills alone may help your pain by only 10-35%. Many different types of medicine can be used to lessen your pain: - Tylenol Arthritis (acetaminophen) 650 mg: 2-3 tabs twice a day OR Ibuprofen (Advil, Nuprin, Motrin IB) 200 mg: 2-3 tabs 2 or 3 times daily (with meals) OR Aleve (naproxen) 250 mg 1-2 tabs twice a day (with meals). OR Prescription NSAIDs (anti-inflammatory pills): Celebrex, Mobic, Relafen, Daypro, Lodine ( These NSAIDs may upset your stomach or cause bleeding; watch for heartburn or nausea) OR - Lyrica (once or twice daily) is FDA approved for FM. OR - Weak narcotics (eg, tramadol) may be needed to lessen pain (especially at bedtime) - Strong narcotic pills like Vicodin, Lortab, Norco, Percocet and steroids (like prednisone) are usually not helpful, may have harmful side effects and should be avoided. 2. Sleep Control: The goal is to fall asleep easily, stay asleep throughout the night and feel refreshed in the morning. Talk to your doctor about your sleep habits (see SLEEP HYGIENE on the next page). If needed, there are many sleeping aids/pills you can use that are usually not addictive. These can be used safely each night if prescribed by your doctor. a. Antidepressant pills like Trazodone, Elavil (amitriptyline), or Pamelor may be helpful. They help FM patients to fall asleep and stay asleep. The doses used are often too low to treat depression, but are helpful with sleep problems, pain, and muscle spasm. b. Sleep aids like Ambien, Lunesta, Restoril (temazepam), Sonata, or muscle relaxants with sedating side effects (like Flexeril, Soma, or Norflex) can also be used alone or in combination. If worried about side effects or if sleep medicines are too strong for you, you can start with half the usual dose of Ambien, Sonata, Elavil, Doxepin, Restoril or Soma. c. OTC sleep aides include Tylenol PM, Advil PM, Melatonin or Valerian root or magnesium powders (such as Calm) (no prescription needed). d. If sleep problems persist, an evaluation by sleep specialist can help. Let your doctor know if you have problems with falling asleep, staying asleep, early waking, snoring, night pain, sleep apnea (sudden stops in breathing – more common in obese or men) or restless legs. 3. Exercises: You must begin a regular stretching and pool exercise program - 3 to 5 times a week. Regular exercise can improve sleep and reduce pain. The BEST exercise for FM patients: - Swimming: water exercise in WARM (not cold) water is advised. This includes swimming, water walking and water aerobics (aquasize) classes. For water programs near you, call the Arthritis Foundation (214-826-4361) OR the YMCA. Hot tubs or Jacuzzi’s help for a short time, but pool exercise is better by providing therapeutic stretch while exercising your muscles and joints. -Yoga (or Tai Chi, Pilates): all 3 are excellent forms of “stretching” exercise to help relieve or prevent muscle spasm/pain, while improving overall health. It is better to join a class/program/club to learn about yoga (or Pilates or Tai Chi). - Find these by checking colleges/schools, YMCA, physical therapists, hospitals, Yellow pages - Wii Fit (costs $300) or YouTube videos: search “stretching & neck, shoulder, hip, back etc. - Walking is good for overall health, but often does not help FM symptoms, fatigue or aching. - Weight lifting is not advised and may aggravate your problems. - Physical Therapy (PT) may help (stretching, massage therapy, heat packs, ultrasound, biofeedback) and Cognitive Behavioral Therapy may also improve your pain. 4. Treat Depression or Anxiety (if present): If depression or anxiety is a problem, then consultation and care by a psychologist or psychiatrist is necessary; especially if the above therapies don’t work. Other sources of information on FM: local Arthritis Foundation (214-826-4361), Fibromyalgia Association (714-921-0150), The Fibromyalgia Network (800-853-2929), public library, NIH.gov, etc. Sleep Hygiene 12 Steps for Good Sleep 1. You need great sleep every night – at least 7 hours for most people. Do not over sleep - Too much sleep is not a good idea. Extra sleep (especially during the day) weakens the refreshing power of a good nights sleep and may interfere with good sleep the next night. Sleep only as much as you need to feel well rested during the following day. 2. Develop and keep a regular sleep schedule and routine. Go to bed and get up at the same time every day (including weekends, holidays). Do not take daytime naps. This will “steal” from your night time sleep. If you must, limit afternoon “power naps” to 30-50 minutes. Get plenty of morning and/or afternoon sunlight. If you work nights – maintain the same sleep schedule – even on your days off. 3. Do not struggle at falling asleep or get frustrated when falling asleep. Don’t go to bed until you are drowsy. Use TV, reading or hot baths to wind down and make yourself sleepy. If you can’t fall asleep, go to another room where you can relax. Return to bed when drowsy. 4. Establish a constant sleep environment. Keep your bedroom quiet, dark, and at a comfortable sleeping temperature. Position the bedroom clock so it will not bother or wake you. Sleep in your bed and not on the sofa or recliner. 5. Your bed is your special place for sleep only. Do not read or watch TV in bed. Your bed should be free of books, magazines, remote controls, computers, cell phones, food, children, pets, snoring spouses. Your bedroom is NOT a place to hangout; it is NOT your office; and it is NOT “command central” for you or your family. 6. Do not go to bed hungry, as hunger may disturb sleep. You may sleep better with a light carbohydrate snack at bedtime. However, avoid eating large meals before bedtime. 7. Tell your doctor about specific sleep problems. Your doctor needs to know if you snore, sleep walk, have nightmares, restless legs, sleep apnea, nighttime pain, heartburn, narcolepsy, etc. Also let us know if you do not tolerate sleeping medicines. 8. Avoid bedtime stimulants! AVOID caffeine (tea, coffee, soda, etc), alcohol (no “nightcap”!), smoking/tobacco, and stressful/stimulating books, TV shows, phone calls or confrontations. These will interfere with falling and staying asleep. 9. Exercise everyday and try to live an active life. Exercise will promote and enhance your sleep. 10. Avoid excessive fluid intake in the evenings. Many visits to the bathroom will interrupt, frustrate and decrease your sleep. Limit your fluid intake after 6PM. Also, if you are on water pills (diuretics) talk to your primary care doctor about decreasing, stopping, or substituting these medications. 11. Improve your sleep comfort. Your bed (mattress, pillows), bed clothes, (blankets, comforters, sheets) and sleepwear (pajamas) should be of high quality and comfort. You should look forward to using these and getting great sleep every night! 12. Consider using bedtime relation techniques. Warm bath, massage, imagery and muscle relaxation can be used to relax your brain and muscles. Avoid stressful tasks or activities (bill-paying, arguments), stimulating books or television before bedtime. FM: Treating Poor Sleep Fibromyalgia Patients Require Great Sleep! Yes Do you have good sleep habits? Continue same plan Read about Sleep Hygiene No What is your sleep problem? Are Restless Legs (RLS) a problem? Problem falling asleep Avoid alcohol, caffeine, tobacco 1st wind down Hot baths, heat exercise massage Bedtime narcotic or analgesic RLS Meds: Requip Sinemet Mirapex Permex Ask MD about other problems Problem staying asleep Due to pain Frequent urination Frequent waking, can’t fall back asleep Bedtime analgesics, narcotics Limit liquids after 6PM Stress Management (wind down or relax) Stop water pill (diuretic) Maximize dose of prescribed sleep aid (warm bath, read) Consider OTC Unisom,Tylenol PM, etc Consider Ambien, Sonata, Lunesta Consider Restoril, Klonopin, Remeron Referral to Urologist for bladder, prostate problems Add in: Trazodone, Elavil, Doxepin Legs jerking or restless Early morning awakening Stress management Treat depression (if present) Maximize prescribed sleep aid Try Soma, Flexeril, Neurontin, Lunesta If not improved, consider referral and evaluation by a sleep specialist or sleep clinic Cramps or Spasms Snoring, apnea Sleep medicine intolerance Is pain under control? Fibromyalgia: Treating Pain No Yes Caution: Do not chase or overtreat pain. The goal is to lessen pain Measures to treat pain: Continue current regimen, good sleep, exercise Tylenol 650mg 2-3 tabs bid Continue current regimen NSAIDs (OTC or prescription) Pain Meds (tramadol, Lyrica, etc) Local heat/ice, Trigger point injection If pain is still poorly controlled Evaluate for poor sleep Is depression present? Prescribe sleep aid or sleep clinic referral Consider Trazodone, Cymbalta, Remeron, Effexor, Zoloft Encourage water exercise, yoga Consider Physical therapy referral If pain still poorly controlled: Refer to Sleep clinic Yes Refer to Psychiatry Is pain controlled? Refer to Pain clinic No Consult a Rheumatologist