|Managing Your Symptoms|
If you are not able to access a provider who is expert on CFS/ME, find a doctor who is empathetic and willing to help. This person may be your existing primary care doctor or someone else you find who either knows about CFS/ME or is willing to learn about it.
There are four ways your doctor can help:
1) Establish a diagnosis
2) Treat major symptoms
3) Treat other conditions that often accompany CFS/ME
4) Provide usual primary care
This section will emphasize treatment of the major symptoms. Diagnosis was covered in the previous section; and your doctor will already be able to treat overlap conditions and provide routine care.
Recognize that there are limits to what your doctor can do. Medical treatment does not treat the disease; it only palliates the symptoms. Medical treatment will not even speed your recovery, but it will make recovery more comfortable. The key to recovery in CFS/ME is acceptance of the illness and adaptation to it by means of lifestyle changes, for which medical treatment is no substitute.
Treating Major Symptoms
There is no known cure for CFS/ME, so currently the goal of treatment is to reduce those symptoms that make your life miserable. Top among these are sleep disruption, fatigue, pain, and orthostatic intolerance.
Sleep problems of PWCs include difficulty falling asleep, difficulty staying asleep, restlessness at night, vivid dreams, and (most importantly) non-restorative sleep. Whether you sleep 4 hours or 14 you probably will not awaken feeling refreshed. CFS specialists agree that sleep is THE most important symptom to address. Poor sleep has widespread effects. Remember: even normal healthy individuals who don’t get adequate sleep will experience fatigue, pain, and irritability! So treating sleep can improve quality of life and reduce other symptoms.
The first principle for improving sleep is to practice good “sleep hygiene.” This includes: (1) using your bed for sleeping only; (2) avoiding stimulant foods and beverages at night; (3) keeping a regular sleep schedule by getting up every morning at the same time; (4) avoiding daytime naps (although short rest periods are fine); (5) not watching TV or using a computer in the bed at night (instead, try reading, soft music, or relaxation tapes); and (6) hiding the clock from view.
If you cannot fall asleep within 30 to 35 minutes there are two options: get up to read or listen to music; or stay in bed and rest quietly even if you are awake. Quiet rest tends work just as well as sleep for many persons with CFS/ME. Avoid watching video screens, however. Scientific studies have shown that watching a TV or using a computer tends to awaken people and interfere with sleep!
Another practice that is often very helpful is to have a “wind-down period” before going to bed. Beginning about an hour before you want to retire, change your activity level and environment. Turn down the lights, perhaps take a warm bath or do something relaxing, then slip into bed when you are ready.
If you have frequent sleep problems, consider a simple over the counter sleep aid such as diphenhydramine (Benadryl ™ 25-50mg), Tylenol PM™, melatonin (3-9 mg 2-3 hours before bedtime), or doxylamine (12.5 to 25mg), the sleep-inducing agent in “Nyquil”. Sometimes herbal sleep aids (which usually contain valerian, chamomile, passion flower, or similar) can be helpful.
If your sleep problem is resistant to such simple remedies, talk to your doctor about prescription medications such as zaleplon (Sonata™), eszopiclone (Lunesta™), or ramelteon (Rozerem™) to help you fall asleep. These usually help you to fall asleep within a reasonable period of time. If you have trouble staying asleep, however, ask your doctor to add 5-10mg of cyclobenzaprine (Flexeril), 2-8mg of tizanidine (Zanaflex™), 2-25mg of doxepin elixir, 10-50mg of amitriptyline (Elavil), or 25-50mg of trazadone (Desyrel). The latter is favored because it has the fewest adverse effects and actually increases the depth of deep sleep.
Zolpidem (Ambien™) and benzodiazepines like Restoril™, Dalmane™, ProSom™, and Ativan™ are not generally recommended because they may be associated with sleepwalking and amnesia or may actually interfere with deep sleep, respectively.
If these measures do not help your sleep problem, ask your doctor for a referral to a good sleep specialist. These experts can recommend more powerful sleep aides, but they can also check for sleep apnea and other serious sleep disturbances. Sleep disorders are present in over 60% of PWCs, but are frequently overlooked by the primary physician.
Fatigue is extremely hard to overcome. Self-help techniques are frequently effective. Perhaps the most important is pacing, which involves honoring the body’s limits and balancing activity and rest. Also helpful are relaxation and other stress management strategies, modest exercise to counteract deconditioning and checking medications for the side effect of sedation.
(For non-pharmacologic ways to manage fatigue, see Dr. Bruce Campbell's article at his CFIDS and Fibromyalgia Self Help website.)
Stress and blue mood also draw down neurotransmitters in the brain that can interfere with sleep, cause irritability, and magnify both pain and fatigue. For this reason, we frequently recommend a trial of a low dose stimulating-type antidepressant -- not so much for anxiety or depression as to replace those necessary brain chemicals! Favorites include 5-20mg of fluoxetine (Prozac™), 50-150mg of sertraline (Zoloft™), 30-60mg of duloxetine (Cymbalta™), or 150-300mg of bupropion (Wellbutrin™). Bupropion has the fewest side effects and is most activating; but duloxetine is very effective when both depression and pain are problems together.
If you are sleepy during the day (that is, you fall asleep reading or watching TV, you doze off in church or meetings, you snooze while riding in the car, or worry about nodding off while driving), then a stimulant medication might be in order. Have your doctor consider modafinil (Provigil™) at 50-200mg each morning to help you stay more alert and focused. Another possibility would be amphetamine salts (Adderall™) at 5-20mg each morning or methylphenidate (Ritalin) at 5-20mg each morning, if your doctor is comfortable prescribing these medications. Remember, stimulants are only helpful if you have excessive sleepiness, not just tiredness or fatigue, which is common to all PWCs.
The first step in pain management is to recognize some reasonable limits. That is, you will probably always have some pain. Short of anesthesia, there is no drug that will totally alleviate the pain of CFS/ME or FM.
The second step is to employ non-pharmacological therapies such as cool packs, hot packs, liniments (such as over-the-counter Deep Heat, Icy Hot, Aspercream, etc.), warm tub or shower soaks, massage, a vibrating massager, perhaps chiropractic treatment or even acupuncture. Your doctor could consider prescribing a TENS unit or a muscle stimulator, both of which are available on the internet for very reasonable fees.
(For more self-help ideas for treating pain, see the article “Non-Drug Treatments for Pain: Nine Strategies.”)
See if you can manage pain with over-the-counter products such as acetaminophen (Tylenol ™ and others), ibuprofen (Advil™, Motrin™, and others), naproxen (Aleve™ and others), magnesium salicylate (Dones Pills™) or aspirin. Your doctor will need to be sure you don’t use too much, and he will need to check liver and kidney function regularly if you use these medications.
Non-narcotic medications that can markedly reduce pain should be tried next, if needed. These include duloxetine (Cymbalta ™), which can be especially helpful if pain and depression run together; gabapentin (Neurontin™); or pregabalin (Lyrica™). Your doctor will know when and how to use these medications.
Failing other pain control methods, tramadol (Ultram™, Ultracet™, and others) is the next best choice because it provides codeine-strength pain relief but is well tolerated and is thought to have little or no addiction potential. Doses of up to 100 mg four times daily can be used (although an overdose condition called “serotonin syndrome” can occur if you are taking certain antidepressants or other drugs). Ask your doctor about this option.
Narcotic medications are generally not recommended for chronic pain unless absolutely necessary. If you need narcotic-level pain relief your doctor will probably refer you to a pain specialist.
The musculoskeletal pain of CFS/ME derives from three sources: (1) flu-like myalgias, (2) fibromyalgia pain, and (3) myofascial pain. Fibromyalgia is responsible for the tenderpoints and deep aching “bone pain.” When fibromyalgia causes muscles to knot up or spasm the result is myofascial pain, or “trigger points” in knotted muscles. These trigger points occur mostly in the neck, shoulders, and between the scapulae (wing bones), but can be found almost anywhere. Trigger points may radiate pain to another part of the body, or instead of pain you may feel burning, stinging, heat, cold, or a dripping sensation.
[ For more information on myofascial pain click here.]
Once again, two methods of pain control are physical (or non-pharmacologic) therapies and pharmacological therapy. Examples of physical therapies include:
Localized areas of myofascial pain are handled somewhat differently, using
Your doctor will have to help you with therapies marked with an asterix (*).
Low Back Pain
Let’s not forget back pain. Most PWCs experience deep achy pain in the low back, just below the belt on both sides of midline. This is usually due to irritation or inflammation of the sacro-iliac joints. Sacro-iliac pain can be improved with chiropractic treatment or physical therapy in some cases. Localized heat, liniments, and over-the-counter analgesics such as ibuprofen, naproxen, or magnesium salicylate may also help. Lidoderm Patches can be extremely helpful. These felt patches have adhesive and lidocaine on one side. You can cut the patches to an appropriate size (try halves or thirds) and apply them over the sacro-iliac joints or other areas of localized pain for up to 18 hours at a time. The lidocaine painkiller will soak through the skin and go directly to those painful areas!
One of the common symptoms of CFS/ME is orthostatic intolerance – the worsening of symptoms by upright posture. Dizziness or faintness upon standing up is also typical of orthostatic intolerance. At the Hunter-Hopkins Center almost all of our patients demonstrate some form of orthostatic intolerance when tested in our cardio-pulmonary lab. About 25% have Symptomatic Orthostatic Tachycardia Syndrome (or SOTS -- a severe increase in heart rate and symptoms upon standing in place) and another 25% have Neurally Mediated Hypotension (or NMH – delayed fainting upon standing in place).
Even if a tilt table or cardio-pulmonary lab is not available, you and a friend can check for orthostatic intolerance. Stand still in a corner or against a wall and have someone check your heart rate and blood pressure every 2-5 minutes. If SOTS is present the heart rate will increase at least 30 points from baseline and symptoms will worsen (especially headache, nausea, muscle aches, and dizziness). When NMH is present symptoms the heart rate will increase and then you will feel faint within 5-20 minutes. If the heart rate does not increase or near-syncope does not occur within 20-25 minutes, the test is probably negative.
Orthostatic intolerance is thought to be a major cause of symptoms in CFS/ME, but is eminently treatable. The goal is to increase blood pressure and maintain a normal heart rate. This is accomplished by increasing the amount of “blood volume” in your body by drinking at least 64 ounces of water and ingesting extra salt daily. The salt is necessary or the water will just be voided – in one end and out the other! In order to be successful, you must ingest 6 to 8 Thermotabs™ (these salt tablets are available over-the-counter at pharmacies or from ProHealth at 1-800-366-6056) or 1 to 2 teaspoons of salt. It is best to use sea salt or “pure salt” from a health food store, if available.
“Volume expansion” with water and salt will reduce symptoms for most PWCs with orthostatic intolerance, but sometimes it is necessary to use medications to treat the condition. Fludrocortisone/ Florinef™ is a steroid-like hormone that raises blood pressure by causing the kidneys to retain salt; and midodrine / ProAmatine™ is a medication that actually increases blood pressure by constricting blood vessels. Your doctor may feel comfortably prescribing these if volume expansion alone is not sufficient, but more likely you will be referred to a cardiologist who specializes in orthostatic disorders.
Caution: if you have high blood pressure (hypertension) you are unlikely to have orthostatic intolerance and you should not attempt volume expansion!
Treating Related Conditions
Most persons with CFS/ME have additional medical conditions that we refer to as "overlap syndromes." The most common of these are:
Your doctor probably already knows how to handle these problems, if present. Just ask him or her to address them … but one at a time!
Four General Treatment Rules
In considering drugs and other treatments, there are four general rules that your doctor must know:
(1) PWCs are extremely sensitive to medications (especially sedating medications), so start with low doses and increase slowly. Start low, go slow!
(2) CFS/ME and FM are very complex illnesses and may require multiple medications to address the numerous symptoms. This “rational polypharmacy” is not unusual or unexpected, and should not deter your doctor from helping you.
(3) It is not unusual to develop tolerance to medications, so your doctor may have to replace medications periodically.
(4) No medication works for everybody, so you and your doctor will probably have to “experiment” to find what works for you.
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