Activity

“Avoid strict bed rest,” says Lapp. “That just leads to deconditioning.” Dr. Lapp recommends balancing light activity with frequent bed rest breaks. In fact, he has been working with physical and occupational therapists to put together a rehabilitation program to help get patients on their feet and moving up the treatment ladder. Several ingredients in Dr. Lapp’s activity rehabilitation program are described below.
Postural Assistance:

“In both CFS and FMS, pain, spasms and shortening of the muscles can all lead to abnormal posture with the head forward and the shoulders somewhat rounded. This frequently leads to back-of-the-neck headaches, headaches in the temples, neck and shoulder muscle tension, and shallow breathing.” So if you already feel tired and achy, these problems will make you feel worse. Dr. Lapp suggests that patients routinely stretch their muscles throughout the day. If possible, consult a physical therapist about gentle stretches that you can do, including ones that can be done while sitting in a chair.
Deep breathing:

Dr Lapp notes that most patients breathe using the muscles in the upper part of the chest. This aggravates neck and shoulder pain, and increases the odds of postural muscles wearing out before noon. To ease tension on muscles that are already under stress from CFS/FMS, Lapp recommends deep breathing through the lower part of your diaphragm – what he calls “belly breathing.” Put one hand on your chest and the other one on your stomach, then breath deeply. Practice breathing so that the hand on your stomach does most of the moving. If you are not used to breathing this way, it will take several practice sessions throughout your day to retrain your lower diaphragm muscles to unconsciously do your breathing for you. “This type of breathing,” says Lapp, ” tends to relieve things like chest tightness, shortness of breath as well as spasms in the postural muscles.”

Physical Modalities:

To treat mild muscle soreness, use hot or cold packs (whichever works best for you). The spray and stretch technique, using a prescription coolant spray to help relieve muscle tightness, can also be taught to you by your doctor or physical therapist. Then you can perform this modality on an as-needed basis at home. “Massage and acupuncture have been extremely helpful in some of our patients,” says Lapp. Other techniques like transcutaneous electrical nerve stimulation (TENS) and ultrasound may provide some relief, but Lapp hasn’t found them as beneficial as the other methods mentioned.
Hydrotherapy:

Dr. Lapp’s version of this modality is to have patients float in tepid pool water or even a tub at home. You only need to be in the water for 15 minutes and the water should be around 85-90 degrees. You don’t have to do water aerobics, although you may eventually work up to this activity as you start to feel better and gain more endurance. How could this type of therapy work? Dr. Lapp presumes it helps patients in two ways:

1. The cool water tends to down regulate the immune system, so patients feel less fatigued and less flu-like.
2. The water pressure squeezes out fluid in the legs and trunk tissues where it tends to accumulate, and pushes it back into circulation where it is more helpful.

Low-level interval exercise:

Exercise no more than two to five minutes at a time and follow it up with five minutes of rest. Increase your exercise period over time. Dr. Lapp says using this type of low-intensity interval exercise on a daily basis can help reduce the burning and searing types of pain, but it will not erase your pain altogether.

Summary of Activity:

Three or four visits to a knowledgeable physical therapist may be enough to teach you how to perform many of the above modalities at home, as needed. While most health insurance plans will not cover unlimited trips to physical therapists, a limited number of sessions for hands-on training should be covered. You may have to emphasize the short duration of the therapy needed and that it is medically necessary to learn how to do these techniques correctly. Once you are at the therapy clinic, have them show you a home program on how to stretch and strengthen your postural muscles.

Nutrition

Dr. Lapp recommends a basic prudent diet. The emphasis is on fresh fruits, vegetables, and light meats (e.g., chicken and fish). “We’ve always told patients to stay away from sugar, caffeine, alcohol, neurotoxins (e.g., aspartame, MSG), and tobacco,” says Lapp. “Many of our patients with irritable bowel syndrome have been found to be sensitive to dairy and wheat, so these may be withheld from the diet to see if it makes a difference. Our treatment includes vitamins and supplements, not so much because patients feel better when they take them, but we’re trying to make them as healthy as possible.”

Lapp suggests patients take a good multivitamin, and he may also recommend other supplements such as Vitamin B12; minerals like magnesium, potassium, and chromium; and supplements that may help decrease muscle fatigue such as coenzyme Q10 and essential fatty acids.

Symptomatic Therapies

Therapies targeting sleep, fatigue, headaches and pain are included in this category. “Of these four,” says Lapp, “sleep is probably the most important to treat.”

Sleep:

“Most of my patients complain that sleep is like butting their head against a brick wall all night long. Klonopin (an anti-seizure drug) and doxepin (a tricyclic drug) are the cornerstones of our therapy, followed by trazadone and maybe a hypnotic like Ambien. Lapp has had some success with using low doses of melatonin at night and bright-light therapy in the morning.

Fatigue:

A small dose of Prozac or Zoloft may help some patients with daytime fatigue. Lapp has also found some success with drugs that raise the body’s dopamine levels, such as Wellbutrin and others.

Headaches:

Dr. Lapp frequently recommends Diamox, which selectively decreases intracranial pressure, and calcium channel blockers which are thought to increase cerebral blood flow. “Sometimes we have to turn to analgesic sedatives like Fiorinal,” says Lapp. He added that for vascular type headaches (migraines), he found Midrin,triptans (e.g., Imitrex, Axert, Relpax, Maxalt, Zomig, et cetera), and CGRP antagonists (e.g. Ubrelvy, Nurtec, Ajovy, Aimovig or Emgality) helpful. Physical modalities such as vagus nerve stimulation (GammaCore) may benefit some.

Pain:

“There are no tricks for the treatment of basic pain,” says Lapp. However, he has found that increasing water intake (along with salt) often helps reduce pain. “It’s inexpensive, safe and easy,” says Lapp. Pain neurotransmitter altering drugs like desipramine, as well as other tricyclics like doxepin mentioned previously for sleep, may also help.  The FDA has approved Cymbalta (duloxetine), Savella (milnacipran), and Lyrica (pregabalin) for the treatment of fibromyalgia pain.  We have also had great success with the off label use of Low Dose Naltrexone.  Lapp has also been using Neurontin, and has found it to help some patients headaches and muscle pain. 

Perpetuating Factors

People with chronic illnesses often battle depression and anxiety problems, and they need to be treated. “I have not seen anybody recover from CFS/FMS that has very severe depression,” says Lapp, “so it must be addressed.” Allergies, chronic infections (including yeast problems), and chemical sensitivities (odors, fumes and smokes) also need to be treated when present. While specific medical treatments may be helpful for allergies and infections, Lapp finds that teaching avoidance is the best way for patients to deal with chemical sensitivities.

Coping Strategies

Chronic illness can create additional stressors, financial pressures, and problems at work. It can also cause family dysfunction. Unfortunately, by the time CFS/ME or FM patients are diagnosed they often find themselves stranded without quality support structures to help them better cope with their illness. Dr. Lapp does not aggressively treat these problems himself, but he does refer patients to a counselor skilled in helping people with chronic illnesses.

Preventive Care

Lapp says preventive care may often be overlooked when a person is chronically ill. On the self-help level, he recommends that patients avoid sunbathing. “The heat can make you tired and weak, so avoid it.” Other recommendations include bone density measurements to check for osteoporosis, annual examinations with routine blood workup, standard screens for cancer, a periodic review of medications, and regular documentation of the progression or regression of the illness to signal problems in therapy or the possible onset of other disease.