Living With Chronic Fatigue Syndrome

Chronic fatigue syndrome (CFS), or what used to be dismissed as “yuppy flu,” is taken more seriously these days. Still, those who have it not only fight fatigue but the frustration of finding a drug or treatment that helps them.

At least a half million Americans have a CFS-like condition (also called chronic fatigue and immune dysfunction syndrome or CFIDS), which is characterized by severe, persistent fatigue and often associated with difficulties in sleep and concentration, aching muscles and joints, headaches, sore throat, and depression. Fibromyalgia (FM), a similar disorder, also causes fatigue and widespread, chronic pain.

Prior to 1990, CFS and FM were consistently misdiagnosed or undiagnosed entirely because physicians either didn’t know much about the subject, had trouble getting an accurate diagnosis or simply didn’t believe the conditions existed. Although CFS and FM are better diagnosed today, the cause – or causes – still are unclear and treatment is often a matter of trial and error.

Treatment is “whatever works,” says Mari Skelly, the co-author of the book Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome.

Adventures in healing

Skelly, who at 31 was diagnosed with FM in 1994, has tried traditional treatments, such as pharmaceutical drugs (24 are mentioned in the book), and alternatives, such as Chinese herbs, yoga and chiropractory.

Andrea Helm, the other author of Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome, also has tried it all – medication, massage therapy, acupuncture – to bring relief for FM and CFS, both of which she was diagnosed as having at age 34.

The book is about “adventures in healing” – their own and personal accounts from others living with FM and CFS, all of which is mixed in with expert advice from treatment professionals in the field.

Relief from FM and CFS is spelled out in many different ways because symptoms vary from person to person, with most experiencing a number of problems, according to Paul Brown, M.D., Ph.D., a renowned fibromyalgia treatment specialist and a rheumatologist in private practice in Seattle, Wash. Brown, who wrote the foreword to the book is also a clinical associate professor at the University of Washington.

Brown notes many patients improve with the help of low-dose antidepressants, muscle relaxants, sleeping aids, analgesics or a combination of medications. Still, others get relief from drugs normally used to prevent seizures, such as clonazepam or gabapentin.

“Since traditional medicine isn’t always successful, many patients experiment with alternative therapies and natural products with some success,” Brown says.

What works?

The range of alternatives discussed in the book includes:

  • Vitamins and supplements from A to Z, including:
    • Antioxidants: increase cell function by eliminating harmful free radicals
    • Chinese herbs: used to flush toxins from the body)
    • Evening primrose oil: an essential fatty acid that helps transport oxygen across membranes and acts as an anti-inflammatory
    • Ginkgo biloba: enhances oxygen availability and aids in memory
    • Magnesium: aids in muscle function
    • MSM: methyl sulfonyl methane used for muscle pain relief
    • Vitamin B complex: for energy
    • Vitamin C: supports adrenal gland and immune system function
    • Vitamin E: helps lubricate cells
    • Zinc: supports immune system function
  • Osteopathy and chiropractic adjustments Both therapies involve hands-on manipulation of the body, which helps to keep the body aligned properly, increases blood flow to injured areas and can impart a sense of well being.

    “I’ve made chiropractic a big part of my overall treatment,” Mari says. She goes twice a week for adjustments, which, she says, help her stay flexible and relieve her headaches.

    If you are looking for a chiropractor, make sure they know how to treat FM and CFS, Maria advises. Also, chiropractic care is not appropriate if you have gross inflammation.

  • Chinese medicine Herbs, including astragalus (huang chi), to increase energy and build resistance to disease; licorice (gan t’sao), for treatment of stomach problems and adrenal exhaustion; ginger root, for digestion; turmeric, an anti-inflammatory that helps with digestion; and linden flowers, which strengthen the lungs. Mari, on the advice of a healer, even tried a drink of chicken feet boiled with garlic. The drink, which tasted like a big glass of hot-dirt-flavored chicken fat, didn’t relief the pain in her feet. However, the slow, meditative chi kung exercises he gave her did help.
  • Acupuncture. This ancient healing practice can relieve pain and stiffness. Micro-thin needles are inserted into different points on the body to get the body’s energy back into balance.
  • Tai chi and Chi Kung (movement therapy). Both help the body relax from muscle spasm and injury. Tai chi, originally developed as a martial art for self-defense, is characterized by slow, rhythmic movements and effortless breathing. Tai chi is a continuous movement type of exercise, but you can do chi kung exercises standing in one place.
  • Exercise, physical therapy, yoga. A number of patients quoted in the book talk about regaining strength and ease of movement through regular exercise and physical therapy. Although strenuous exercise should be avoided, the authors say, even 15 minutes a day of exercise significantly can impact your mobility.

Both Skelly and Helm say the search for the right combination of medication and therapies is often difficult but not impossible. If your physician only is willing to try conventional therapies, they say take advantage of them, but remember to explore the alternatives under your doctor’s care.

Treatment for CFS and FM takes time, money and referrals and insurance and reimbursements, they write. And, they say, “It takes diligence. It takes patience. It takes an overwhelming desire to be well.”