Where Should I Focus To Get Better?
We are sometimes asked the question that’s the title to this article: where should I focus my efforts if I want to improve? Based on our experience with thousands of people with CFS and fibromyalgia, here are five areas we suggest you explore.
1) Get Medical Help
If you're feeling discouraged about getting sensitive and helpful medical care, I can say: we understand. Searching for that kind of care if you have CFS or FM is often a long and frustrating journey. In our experience, however, most people with CFS and FM are eventually successful in finding a doctor they like and trust.
A doctor can help you in at least four different ways:
Before leaving this topic, let me add a qualification about the limits of medical care for CFS and fibro. It comes from our friend and medical advisor Dr. Charles Lapp, director emeritus of the Hunter-Hopkins Center, a clinic focused on treating people with CFS and fibromyalgia. In another article on this site titled How Your Doctor Can Help, he writes:
While your doctor's role is important, you should recognize that there is no known cure for CFS or 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.
2) Emphasize Pacing
The second suggestion follows on Dr. Lapp's idea: focus much of your effort to get better on pacing. The reason is that the way you live your life has a big effect on your symptoms and quality of life.
For example, many people with CFS and FM experience repeated cycles of push and crash. They go beyond limits, then are forced to rest because of intense symptoms. Unfortunately, the intensifcation of symptoms is usually out of proportion to the overexertion. Being caught in this cycle leaves many people feeling their lives are out of control.
Pacing, in contrast, involves understanding your limits, adapting to them and gradually extending them as allowed by the body. With consistent pacing, you experience lower symptoms and avoid swings between push and crash, giving your life stability and predictability. With predictability comes confidence that you can make and honor commitments.
Predictability gives you control, the sense that you are in charge of your life, rather than living in response to your symptoms. Also, you are likely to be much more productive. Some people think that because pacing means staying within limits, it means you get less done. But if you avoid spending lots of time out of commission because of push and crash, you’ll have more time to be active.
We think that pacing is so important that we have a whole section of the site devoted to it: the Pacing Tutorial. Also, there are several dozen articles devoted to pacing in the Pacing archive and personal accounts of improvement from using pacing on the Success Stories page.
3) Manage Stress
The next suggestion is to focus a lot of attention on stress management. We believe that stress is usually the second most powerful symptom intensifier, behind only overdoing. Stress presents a double challenge.
First, CFS and FM bring new stresses on top of those you already experienced. These new stresses include ongoing symptoms, isolation, financial pressure, and uncertainty. Second, CFS and FM make people more stress sensitive, so a given level of stress takes a greater toll than it would on a healthy person. The combination is a double challenge: more stress + greater vulnerability.
Because stress is so common and so debilitating, we recommend you use multiple techniques to manage it. Some pacing strategies help, such as taking daily rests, learning to be assertive, and using routine.
Other frequently-used stress management approaches include doing a daily relaxation procedure, de-cluttering, limiting exposure to the media, limiting contact with some people, avoiding crowds and noisy places, getting help with household chores and making mental adjustments (such as letting go of unrealistic expectations). For more, see the four-part series Managing Stress or articles on the Stress Management archive.
4) Build Support
The fourth suggestion is to get support. Serious illness creates stresses in most relationships and often makes people feel isolated and alone. Working to improve family relationships and making efforts to build new sources of support are both important.
Major adjustments are usually needed within the family in response to CFS and FM. Family members are sometimes not understanding of the limits imposed by illness and need education about CFS and fibro.
And they, too, have to adjust their lives because CFS or FM. Educating others often requires patience –sometimes it takes family members several years to accept CFS or fibromyalgia— and such efforts are not always successful.
It’s also important to build new sources of support. We recommend you get to know other people with CFS and fibromyalgia. They can provide information, practical ideas, understanding, and encouragement. Some people with CFS and fibro find professional help from counselors useful as well.
For ideas on these topics, see the Relationships & Support archive and the Family & Friends section.
5) Use Realistic Hope
The last suggestion deals with the attitude and approach to take. Progress with CFS and FM is almost always gradual, so we suggest an attitude that combines acceptance and hope. We sometimes call it acceptance with a fighting spirit. Acceptance is not resignation but rather acknowledging that life has changed and it is necessary to live differently than before.
This approach also includes the belief that there are things to do that will bring improvement. Medications and self-help strategies may not cure CFIDS or fibromyalgia, but they can help reduce pain and discomfort, bring greater stability, and lessen psychological suffering.
One person in our program wrote that she had regained control over her life, regaining physical comfort and learning how to control her symptoms. She wrote, "I apply the word 'recovery' to myself because I have regained a satisfying life. It's just not the life I had before CFS."
I hope you have equal success.