Medical Help and Self-Help

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By Bruce Campbell

When you have a medical problem, the first thing you may ask is: How can the medical system help me?

Medical Help

When you think about that question in relation to CFS or fibromyalgia, you may feel frustrated and discouraged. There is no cure so far for either condition and no consistently effective medical treatment. And you may have encountered doctors who didn’t understand either condition and who doubted whether you were really sick.

Even though medical resources are limited for CFS and fibromyalgia, your doctor can help you in at least four ways:

By giving or confirming a diagnosis of CFS and/or fibromyalgia
By treating the major symptoms, especially poor sleep and pain
By diagnosing and treating other medical problems that often occur together with CFS and fibromyalgia
By providing general primary care to address any other medical issues you may face.

These are all important and useful but limited, as suggested in the following quote from the article How Your Doctor Can Help If You Have CFS/ME, by well-known CFS and FM physician and our medical advisor Dr. Charles Lapp. He says:

While your doctor's role is important, you should recognize that there is no known cure for CFS and FM, so there are limits to what your doctor can do. Medical treatment does not treat the disease; it only palliates the symptoms. The key to recovery is acceptance of the illness and adaptation to it by means of lifestyle changes.

He has also written: "There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of CFS or FM."

Self-Help

We agree with Dr. Lapp that how a person responds to CFS or FM is crucial. So, we suggest that, in addition to asking about medical help, you ask yourself a second question: How can I help myself?

The tools you’ll find on our websites will help you understand how you affect your condition and, more importantly, what you can do to help yourself.

Let me give you one quick example, one you may be familiar with. Many people with CFS and fibromyalgia feel trapped in repeated cycles of push and crash. When their symptoms are low, they push to get as much done as they can and they overdo.

The result of overexertion is an increase in symptoms and so they crash. The high level of symptoms leads them to rest in order to reduce discomfort. This is usually successful and rest reduces their symptoms.

But then, feeling frustrated at all they didn't do while resting, they plunge into another round of overactivity to catch up. This, in turn, causes another intensification of symptoms, so they experience another crash.

One notable thing about push and crash is that the intensification of symptoms is out of proportion to the overexertion. For example, it’s not unusual for an hour of extra activity to trigger a half day or more of bed rest and a higher level of symptoms that lasts as long as a week. This phenomenon is known as Post-Exertional Malaise, which is discussed in an article by that name.

But there is another way to live with CFS or fibromyalgia, called pacing. It involves understanding your limits, adapting to them and then gradually extending them as allowed by the body. Pacing offers the possibility of a more stable and predictable life. And less suffering. By staying within your limits, you can avoid post-exertional malaise, saving you many hours of forced rest because of high symptoms.

Comprehensive Effects

In addition to learning how you can lessen symptoms and gain more control through pacing, self-management also gives you tools to address all the other issues you face, because CFS and FM are not simply medical problems. They have comprehensive effects, touching many parts of your life.

So many parts of life are affected when you have CFS or fibromyalgia, that the number of issues you have to deal with can feel overwhelming. They include, besides your health, your ability to work, your relationships, your moods, your hopes and dreams for the future, and even your sense of who you are. And on top of all those, there is coming to terms with loss and finding a way to bring meaning to life.

In sum, to live successfully with CFS or FM, you have to do much more than just manage symptoms. You have to address their effects areas like your emotions, your relationships, your finances and your view of your self and your place in the world.

Let me add that self-help is no more a panacea for CFS or FM than medical treatment. You are likely to run into obstacles using self-management. Unforeseen events, such as other illnesses or a family crisis, can derail you for a time.

And you may encounter inner obstacles as well, such as difficulty accepting the severity of the limits imposed on you by CFS or FM. Also, because progress is based largely on changing daily habits and routines, it requires patience and determination.

But I hope you’ll also remember something that we’ve seen often in our program and I know from my own experience of recovery from CFS, namely that an approach focused on self-management can change the effects of CFS and fibromyalgia, and may even change their course.

The resources you’ll find on this site will describe how to take an active role in improving well-being, regaining control and creating a more stable and predictable life. I hope you find here both practical strategies and a foundation for hope. Even with an illness for which there is so far no cure, there are many ways to bring improvement.