Your Doctor’s Role and Yours

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By Bruce Campbell

(From the series Treating ME/CFS and Fibromyalgia.)

Both you and your doctor have roles to play in treating Chronic Fatigue Syndrome (ME/CFS) and fibromyalgia. Four ways your doctor can help are described immediately below.

But you too, have an important role, because the way you live your life with ME/CFS or FM has a big effect on your symptoms and quality of life, often a larger effect than medical treatments. See the second section below for more on how you can help yourself.

Four Ways Your Doctor Can Help

Here are four ways your doctor can help if you have Chronic Fatigue Syndrome or fibromyalgia.

1) Establish a Diagnosis

ME/CFS and fibromyalgia are hard to diagnose. People often spend several years, going from doctor to doctor, before knowing the source of their suffering.

Getting a diagnosis gives a name to your condition and also provides direction. With a diagnosis, you can begin to research treatments and establish relationships with other people who share your condition.

2) Treat ME/CFS and FM Symptoms

Second, a doctor can treat the symptoms of the two conditions. Since there is no known cure so far for ME/CFS or FM, the goal of treatment is to alleviate their symptoms. Treatment often focuses on the four we’ll explore in this series: fatigue, pain, unrefreshing sleep and cognitive problems.

3) Treat Other Conditions That Often Accompany ME/CFS and FM

Most people with ME/CFS and fibro also have additional medical problems called overlapping and related conditions. They include:

Allergies and chemical sensitivities
Arthritis
Depression
Endometriosis
Gastroesophageal reflux disease (GERD)
Irritable bladder syndrome (interstitial cystitis)
Irritable bowel syndrome (IBS)
Food and digestive issues: Candida, Celiac disease, lactose intolerance
Mitral valve prolapse
Multiple Chemical Sensitivities
Migraine headaches
Myofascial pain
Orthostatic problems such as neurally mediated hypotension (NMH) or postural orthostatic tachycardia syndrome (POTS)
Sensitivity to light, sound, smell and touch
Sleep disorders such as apnea and restless legs syndrome
Temporomandibular joint disorder (TMJ)
Thyroid problems
Vulvodynia

4) Provide Referrals

Lastly, your doctor can provide referrals to specialists for other medical problems.

For more on your doctor’s role, see Dr. Charles Lapp's article How Your Doctor Can Help If You Have CFS/ME.

For more on how your primary care doctor can recognize and treat ME/CFS, see the six-page guide written by the U.S. ME/CFS Clinician Coalition, a group of doctors who specialize in treating ME/CFS. The guide can be read, printed, and downloaded here

How You Can Help Yourself

The self-management approach you’ll find on this site reflects a belief we share with ME/CFS and fibromyalgia experts: even though doctors and medications can help if you have ME/CFS or FM, your success in reducing symptoms and regaining control of your life will probably depend more on your efforts and willingness to adapt than on anything a doctor does for you.

The reason is that the way you live your life has a big effect on your symptoms and quality of life, often a larger effect than medical treatments. Your habits and routines either intensify your symptoms if you live outside your limits or reduce them if you live within your limits.

As Dr. Lapp says, "There are limits to what your doctor can do." The key to recovery with these conditions, he says, "is acceptance of the illness and adaptation to it by means of lifestyle changes, for which medical treatment is no substitute."

Here’s an example. If you lack an understanding of the limits imposed by illness, you are likely to experience repeated cycles of push and crash. When your symptoms are intense, you go to bed. When they subside, you resume your activity level, but then experience increased symptoms and retreat to bed again. This cycle can be discouraging and makes improvement difficult.

However, by using pacing, which involves finding and adapting to the limits imposed by illness, you can replace push and crash with a more stable and predictable life, one that greatly enhances your chances for improvement.

Making changes in how you live your life has several advantages over medications. Strategies such as pacing and stress management are inexpensive and safe. In addition, they affect multiple symptoms and have a high probability of helping.

Most of the people with ME/CFS and fibro that we have known who have shown marked improvement have relied primarily or exclusively on this approach.

The self-management approach you'll find on this site provides tools for coping that can also promote improvement and even recovery in some cases. The upcoming articles in this series and other articles on the site contain many ideas for things you can do to feel better.

These strategies can help reduce pain and discomfort, bring greater stability, lessen suffering, and may produce improvement, as we have seen many times in our classes, and you can read about in the articles in the Success Stories section.