Will I Get Better? Tilting the Odds in Your Favor

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By Bruce Campbell 
 

Do you remember how you reacted when a doctor told you had ME/CFS or fibromyalgia?

[Note: If your diagnosis of the first condition came some time ago, the doctor may have used the term Chronic Fatigue Syndrome (CFS) or Chronic Fatigue and Immune Disfunction Syndrome (CFIDS) or, outside the United States, Myalgic Encephalomyelitis (ME).]

I remember a tremendous rush of contradictory emotions. First, I felt relief. After suffering for months with disabling symptoms and worries about what they meant, at last I had a name for my illness. Then I felt shock, as the reality of being told I had a long-term illness sank in.

Two questions rushed to mind: what are my chances for recovery? and, given the limited medical resources for CFIDS (I was diagnosed in the 1990s), what can I do to help myself?

In this article, we'll look at answers to those two questions, describing the prognosis for people with ME/CFS and fibromyalgia, and also discussing what you can do to tilt the odds in your favor.

The Prognosis for ME/CFS Patients

There is so far no cure for ME/CFS and its course varies greatly. Some patients, probably only a small percentage, recover. They are able to resume their pre-illness lives with only a minor residue from the illness, such as vulnerability to high levels of stress or less physical stamina.

Another, larger group achieves notable improvement, but less than full recovery. The amount of improvement in this second group ranges widely. The total of these two groups might be something like half or perhaps somewhat more than half of all patients. Unfortunately, others remain quite ill while a few worsen over time.

The course of ME/CFS also varies. Some people with ME/CFS make relatively steady progress, some swing between periods of improvement and times of intense symptoms, while still others have a relatively stable level of symptoms, neither improving nor declining.

The Prognosis for Fibromyalgia Patients

Fibromyalgia is neither progressive, nor fatal. Just as there is no cure for ME/CFS, there is no treatment that cures fibromyalgia. But, as with ME/CFS, some patients experience a spontaneous recovery and many experience notable improvement. In fact, improvement is probably the most common outcome for fibromyalgia, experienced by half to two thirds or so of patients.

As with ME/CFS, the course of fibromyalgia may vary. The location and severity of pain can change over time. Symptoms can be intermittent, fluctuating or persistent. Triggers of symptom intensification may include excessive activity, inactivity, stress, trauma, repetitive motion, poor sleep, strong emotions and weather changes.

Tilting the Odds

So ME/CFS patients can create conditions that make improvement possible but there is no assurance about outcome. For fibromyalgia patients, recovery is also uncommon, but that doesn't mean people with ME/CFS and FM are helpless.

We have found in our self-help program that both people with fibromyalgia and those with ME/CFS can affect symptom level and quality of life. The Improvement is often dramatic, even if the pace of change is gradual.
 

Self-Management for ME/CFS and Fibromyalgia

We believe that in addition to getting good medical care, there are many things that people with ME/CFS and fibromyalgia can do for themselves. We call this self-management, which means accepting responsibility for those parts of our illness that are under our control.
 

Chances for improvement depend on which illness you have and the severity of your case. For those destined to recover, self-help can speed up the process. It can also assist those who are improving to gain more.

Self-management can also help improve quality of life for those whose functional level does not change. They can learn to control symptoms, to bring stability to their lives, and to increase the amount they can accomplish.

Two Stories of Self-Help

Let me describe the experience of two people with ME/CFS to suggest the range of what can be accomplished through self-management. (You can read their accounts of improvement in our Success Stories series.)

JoWynn Johns, who was housebound because of ME/CFS, reduced her symptom level dramatically over several years by using self-help strategies, while expanding her activity level to some degree. Dean Anderson, who estimated that his worst level of functioning was 60% of normal, experienced a full recovery.

JoWynn and Dean used similar strategies in responding to ME/CFS. They both began by accepting the reality of the illness and the need to lead a different kind of life. They found their limits by listening to their bodies, by experimenting with different activity levels, and by keeping detailed records.

They both learned to control their symptoms by alternating scheduled rests with periods of activity. Both had a flexible approach, in which they continually reflected on and learned from their experience. And they both found the key to improvement lay in disciplining themselves to live consistently within the limits imposed by their illness.

The Power and Limits of Self-Help

Looked at together, their experience suggests both the power and the limits of the self-help. In some respects, the results they achieved were similar: both reduced their symptoms significantly through self-management. Their levels of functioning, however, are quite different.

Dean, whose ME/CFS was much milder, returned to a nearly normal life. JoWynn, who had a more severe case, learned to control her symptoms and improve her quality of life, but increased her activity level only modestly using self-help.

Their different experiences suggest that even though we may not control our level of improvement, we may be able to exert significant influence on our symptoms and thus on our quality of life.

In Summary

Self-management is not a cure for ME/CFS or fibromyalgia. At this point, there is no cure for either illness. Rather, self-management can be used to reduce suffering, improve quality of life and increase activity level.
 

The path is often not a smooth one. You are likely to run into obstacles. Both ME/CFS and fibromyalgia can wax and wane unpredictably. Cognitive problems can make change difficult.

Unforeseen events, such as a family emergency, can derail you for a time. And relapses are both frequent and disheartening. Improvement can be slow and requires patience. But, as the accounts in our Success Stories series suggest, improvement is real as well.