How Your Doctor Can Help If You Have CFS/ME

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By Charles W. Lapp, MD

Note: Dr. Lapp, is the founder and medical director of the Hunter-Hopkins Center in Charlotte. The clinic is one of the few medical practices in the United States specializing in CFS/ME.

If you are not able to access a provider who is expert on CFS/ME, your next best bet is to 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

While your doctor's role is important, you should recognize that there is no known cure for CFS/ME, so 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.
 

1 Diagnosing CFS/ME

We at the Hunter-Hopkins clinic have developed materials for physicians to use to diagnose and manage CFS/ME. The Quick Start Guide provides all information needed to establish a diagnosis and rule out other possible causes for your symptoms. It is available here. The clinic’s Patient Handout is available here.

2 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, and pain.

The treatment recommendations below also apply to fibromyalgia, with the qualification that people with "pure" FM (minimal fatigue and cognitive impairment) usually tolerate higher levels of exertion and can push somewhat harder.

Treating Sleep

Sleep problems of PWCs [People with CFS] 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. 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)
     (6) Hiding the clock from view

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.

If you have frequent sleep problems, consider a simple over the counter sleep aid such as diphenhydramine (Benadryl ^TM 25-50mg), Tylenol PM^TM, melatonin (3-9 mg 2-3 hours before bedtime), or doxylamine (12.5 to 25mg), which is 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^TM), eszopiclone (Lunesta^TM), or ramelteon (Rozerem^TM) to help you fall asleep.

If you have trouble staying asleep, however, ask your doctor to add 5-10mg of cyclobenzaprine (Flexeril), 2-8mg of tizanidine (Zanaflex^TM), 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^TM) and benzodiazepines like Restoril^TM, Dalmane^TM, ProSom^TM, and Ativan^TM 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.

Treating Fatigue

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 more self-help ideas for counteracting fatigue, see Dr. Bruce Campbell's article Fighting Fatigue.)

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^TM), 50-150mg of sertraline (Zoloft^TM), 30-60mg of duloxetine (Cymbalta^TM), or 150-300mg of bupropion (Wellbutrin^TM).

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, watching TV or riding in the car), then a stimulant medication might be in order. Have your doctor consider modafinil (Provigil^TM) at 50-200mg each morning to help you stay more alert and focused.

Another possibility would be amphetamine salts (Adderall^TM) 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.
 

Treating Pain

Short of anesthesia, there is no drug that will totally alleviate the pain of CFS/ME or FM, so the first step in pain management is the recognition that you will probably always have some pain.

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 Dr. Bruce Campbell's article Non-Drug Treatments for Pain: Nine Strategies.)

Pharmacologically, see if you can manage pain with over-the-counter products such as acetaminophen (Tylenol ^TM and others), ibuprofen (Advil^TM, Motrin^TM, and others), naproxen (Aleve^TM and others), magnesium salicylate (Dones Pills^TM) or aspirin. Your doctor will need to be sure you don't use too much, and he/she 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 ^TM), which can be especially helpful if pain and depression run together; gabapentin (Neurontin^TM); or pregabalin (Lyrica^TM).

Failing other pain control methods, tramadol (Ultram^TM, Ultracet^TM, 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).

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.

Pain in the lower back 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. You can cut the patches to an appropriate size and apply them to the areas of localized pain.

3 Treating Related Conditions

Most persons with CFS/ME have additional medical conditions that we refer to as "overlap syndromes" or "shadow syndromes." Probably the most common is fibromyalgia. A majority of people diagnosed with CFS/ME also meet the diagnostic criteria for FM.

Besides fibromyalgia, the most common overlapping conditions are:

• Irritable bowel and irritable bladder
• Temporomandibular joint disorder (TMJ)
• Migraine headaches
• Restless leg syndrome (while awake) or periodic leg movements (during sleep)
• Sleep apnea
• Vasomotor (autonomic or non-allergic) rhinitis
• Digestive problems such as gut motility disorder with trouble swallowing, early satiety, nausea, and/or constipation
• Autonomic dysfunction with low blood pressure
• Multiple chemical or food sensitivities
• Gluten (wheat or grain) intolerance or celiac sprue-like symptoms
• Lactose (milk) or fructose (fruit sugar) intolerance
• Orthostatic symptoms or fainting
• Dry eyes and mouth (sicca complex)
• Vulvodynia or vulvar vestibulitis (vulvar / vaginal pain)
• Joint hyperlaxity (hyperextensible or "trick" joints, frequently associated with low blood pressure and autonomic symptoms)
• Metabolic syndrome (a pre-diabetic condition characterized by elevated blood sugar and triglyceride levels, a protuberant or pear-shaped abdomen, and insulin resistance)

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 you doctor must know:

1) PWCs are extremely sensitive to medications (especially sedating ones), so your doctor should start with low doses and increase slowly. Start low and go slow!

2) CFS/ME and FM are very complex conditions 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) Your doctor may have to replace medications periodically, since it is not unusual for PWCs to develop tolerance to medications.

4) No medication works for everybody, so you and your doctor will probably have to experiment to find what works for you.
 

In Conclusion

Even though there is so far no cure for CFS/ME, there are many treatments. The most important is acceptance of the illness and adaptation to it. Good medical care can play a role.

While it cannot cure CFS/ME, medical care can help alleviate its symptoms and further reduce suffering by treating other medical problems.

Note: Doctors' Guide to Diagnosing and Treating ME/CFS

Dr. Lapp and other US doctors who specialize treating people with ME/CFS published in 2019 a six-page guide for primary care doctors to help them diagnose and treat people with ME/CFS. The guide can be read, printed, and downloaded here.