Join The Next Introductory Class

Register now for classes that begin on July 1, 2024. Registration closes on June 24, 2024. Cost: $20.00.

 

Each person's experience of CFS/FM is a unique combination of factors, each of which can either help promote improvement or make it more difficult.

 

Perhaps the most important factor is the severity of CFS/FM, which varies greatly from person to person. On one end of the spectrum, there are people who have relatively light cases and are able to continue working full time; on the other end, some have very severe cases and are bedbound, with many people in between.

The average (median) of people entering the self-help program has been about 25% of normal, with most people between 15% and 40%.

A second factor is the presence or absence of additional medical issues beyond CFS or fibro. A very common pattern is to have both CFS and FM.

Also, many people with either condition often has one or more other medical issues that often accompany CFS/FM, such as sleep disorders (especially apnea), chemical sensitivity, food-related issues (e.g. celiac disease, lactose intolerance) and orthostatic problems like neurally mediated hypotension. (For more, see the article Overlapping and Related Conditions.) And some people have medical issues faced by many people, such as cancer, diabetes, and heart disease.

 

If you have just CFS or FM, with no additional medical issues, consider yourself lucky. You’re in the minority.

 

3) Finances

People’s financial situations vary greatly as well. Some people are supported by a spouse or choose to take an early retirement. Their finances are minimally impacted by CFS/FM. On the other end of the spectrum, people with severe cases may be forced to survive on disability payments, which may be withdrawn.

 

A person’s challenges and the resources she has to deal with them also depend on family circumstances (single or married and stage in life) and family responsibilities (who is dependent on you: children, parents, spouse, grandchildren or others).

A single mother with two children living away from other family members is very different from a retiree who occasionally visits grandchildren.

 

Another significant factor is the degree of stability in a person’s life. Some people are forced to move or have other forms of instability. In contrast, others have lives that are quite stable. Given the effects of stress on symptoms in CFS/FM, the presence or absence of stability has a big effect on suffering through either intensifying or muting stress.

 

The sixth significant factor is support, from family, friends, others with CFS/FM and doctors. Again, there is a broad range of experience. Some people struggle to find understanding and support from their family and friends, and may be told over and over from doctors that it’s all in their heads. On the other end of the spectrum, some families are understanding and most people get a diagnosis eventually.

 

This is a factor that people with CFS/FM can affect to some degree. By asking for help from family and friends, and developing relationships with others who are in similar situations, people with CFS/FM can improve their support, sometimes significantly.

 

We have known many people with CFS/FM since our program started in 1998 and have observed many different patterns of improvement. Some people are able to control symptoms by making lifestyle adjustments, but don't improve their activity level or do so only modestly.

Their cases of CFS seem to place a ceiling on how much they can increase their functional level. Others, using the same lifestyle changes, both learn to control their symptoms and also increase their functional level. As far as we can tell, there is no way to predict a person’s ‘recovery ceiling’.

 

Many of the factors listed above are ‘givens’ and out of a person’s control. The final factor is one that all of us can affect: how we choose to live with CFS/FM.

 

Thousands of people have participated in our program, so we have seen examples of many different ways of responding to CFS/FM. Before joining us, some people tried to ignore their illness, sometimes struggling on with their old lives for years. Among them were some who struggled to the point of collapse.

Others, sometimes beginning before they found us and others through the program, took a different approach. Instead of ignoring or fighting their debilitating symptoms, they learned to listen to their body and give it what it needed.

The bottom line: whatever our approach up to now, this is a factor we can change.

 

Many people with CFS/FM compare themselves to the person they were before they became ill. This is a road to guilt, depression, and overdoing. The fairest way to set expectations is to take all eight factors described above into consideration.

 

Second, there is the distinction between things you can control and those you can't. You may not chosen to have CFS/FM, but you can choose how you respond to them. Your actions and attitudes have an effect on symptoms.

If you do too much one day, you will experience the intensification of symptoms called Post-Exertional Malaise. But if you stay within your limits, you can gradually increase your control.

 

In the words of CFS/FM specialist Dr. Charles Lapp of the Hunter-Hopkins clinic on website we created together:

 

Your doctor can help you cope with CFS/FM, but your success in regaining control will likely depend more on what you do than on anything a doctor does for you.

 

Medical treatments can help alleviate the symptoms of CFS/FM and further reduce suffering by treating other medical problems, but the key to recovery in CFS/FM is acceptance of the illness and adaptation to it by means of lifestyle changes [my emphasis].

 
If you adopt [this approach] --which will require discipline, courage and lots of patience-- you can overcome the CFS/FM dragon. You can regain control, instead of your condition controlling you!