What are the most important things to remember about CFS/FM?
My dear friend, Roger Gilmore, once suggested to me that the keys to improvement in CFS/FM are ACCEPTANCE, then ATTITUDE, the ADAPTION. The more experience I accrue, the more I think he is right. Let’s examine each of these themes.
I used to show a cartoon in my presentations that addressed acceptance. It wasn’t a funny cartoon, but one that makes a point. It showed two boxers in their respective corners of a boxing ring. One trainer was advising his haggard fighter, “He’s bigger than you, stronger than you, and faster than you … It’s time we talk strategy.” CFS/FM is like that. It’s bigger than you and stronger than you. You cannot wish it away, pray it away, exercise it away, or even lay around until it goes away – you have got to develop a strategy. And planning a strategy requires that you first accept that you have a problem, and second that you be willing to deal with it.
I have had many patients who could not accept CFS, so they would push until they crashed, exercise beyond limits, try to keep up their activities, and pretend that they weren’t limited. As a result, they all got sicker and sicker. Many have never recovered. They crossed that invisible line beyond which modern medicine can no longer help, and they have remained broken and miserable as a result.
Accept that you have been dealt a poor hand, then resolve to play the cards as best you can. You may not be able to return to your previous hectic activities, or work full time, or raise children and run a household without assistance, but you can have an active, meaningful, and enjoyable life! Healing never occurs without acceptance.
There are a number of factors that negatively impact recovery, but a poor attitude heads the list. Those who insist “I can’t, I won’t, … ” fulfill their own prophesies. The first step is to convince yourself that “I can, I will …” Next address any emotional obstacles, especially depression, anxiety, and stress. Nothing will defeat the “I Can Attitude” like depression and anxiety, and I don’t believe that I have ever seen recovery from CFS or FM until these two emotional hurdles are removed. See a psychiatrist, see a counselor, talk to your pastor, priest, or rabbi – but do whatever you can to control these emotional drains.
Persons with CFS/FM respond to emotional stresses as if they were physical exertion. In other words, emotional stresses like deadlines, emergencies, and confrontation sap away physical energy. Anger and bitterness are emotional drains that sap away physical energy also. Identify such stresses in your life, and do whatever possible to eliminate them. As one sage put it, ‘there are two kinds of stresses: those that you can control, and those that you cannot. Learn to deal with the ones that you can control, and accept those that you cannot.’
This leads to the last key, adaption.
The hardest part of dealing with CFS and FM, I believe, is making the necessary lifestyle changes. Personally I was lucky in this regard. I survived a heart attack at age 45. I can remember lying in the Intensive Care Unit and looking at the men and women lying next to me — most of whom were almost twice my age – and asking myself “how did I get here and what can I do to prevent this from happening again?” Call it luck or call it fate, but that day the ICU was visited by too well-known cardiologists, Dr. Dean Ornish and Dr. Robert Benson, who were promoting a program of relaxation, meditation, diet, and exercise to reverse heart disease. In other words, the way to deal with this was to make lifestyle changes, and the solution literally stepped up to me and shook my hand!
The lifestyle changes necessary in CFS and FM are straightforward and reasonable, but for most of us they do require major shifts in the way we see and do things:
- Stick to a simple daily routine, including a fixed wake time every day
- Endeavor the best sleep possible for at least 8-10 hours each night.
- Pace yourself by alternating short periods of activity with rest
- Set reasonable limits on your activity and strive to stay within your “energy envelope”
- Make a daily low level exercise program a priority
- Eat a nutritious well-balanced diet every day
No pain, no gain. But the pain of revamping an ambitious, active (probably unhealthy, self-destructive) lifestyle is worthwhile in order to regain one’s energy, ability, and self-respect.
Dr. Lapp,
I am a patient and I appreciate your contributions and your commitment to helping the ME community. But I had a hard time with this piece. It touches the it’s-all-in-your-head nerve with me and other patients. There is no doubt that emotional equilibrium (acceptance and attitude) can be healing for all chronically ill. And, of course, pacing (adaptation) is crucial to avoid further deterioration for ME patients.
But I think it is very important for the few experts in the area to keep in mind their potential audience and to be fully aware of their responsibility in not painting a picture of the illness that is easily misunderstood. Patients are ridiculed, shunned, blamed, disbelieved and judged by their family, friends, neighbors, colleagues and physicians every day. After reading this blog post, it might be easy for those “non-believers” to feel justified in their unfair treatment of patients. After all, if the big difference between remaining ill and recovering is acceptance, attitude and adaptation, then it must be a patient’s fault that he or she has not yet gotten well.
Why not first establish how serious this disease really is and give a couple of examples of people’s incredible limitations due to the illness, so that whoever reads this post written by one of the specialists, you, can fully appreciate how hard it is too accept and to adapt? And why not stress, just to make sure there won’t be any misunderstanding, as there are already way too many when it comes to ME, that while attitude is important, ME patients have lots and lots of abnormal test results; you know, test results that cannot be explained by false illness beliefs? Also, why not mention that “recovery,” which you mention, is extremely rare?
Again, I am not contending that emotional stress is toxic for ME patients and that we need to minimize it whenever we can. But I worry about an article being out there that was written by a specialist and that promises in its title to explain the most important things about ME without even hinting at how serious this disease is.
Ok, so now after speaking my mind, I will work very hard on going to me Zen place again. I promise.
Sincerely,
Jeannette
PS: I am using the term ME instead of CFS, as many patients find the name Chronic Fatigue Syndrome, or worse, chronic fatigue, derogatory and misleading.
Jeannette, thanks for the great comments! You know me and surely understand that I do NOT consider CFS/ME to be “all in the head.” In fact, I have devoted my career to teaching otherwise! The point I am trying to make her is that persons who do not “accept and adapt” expend a lot of energy on resentment, anger, grief, loss, seeking a specific cause, seeking a cure, etc. Those of us who have treated CFS/ME successfully know that such energy is wasted. To put it another way, I don’t believe I have ever seen anyone recover who does not accept that a mysterious and unexplainable change has taken place, and that the person has to adapt to that new reality. For more on this, consider one of Dr. Pat Fennell’s books (www.patriciafennell.com).
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Dr. Lapp- you had me until the last sentence. I’ve had ME/CFS for the last 12 years. My life prior to this illness was not unhealthy or self-destructive, nor has it been since becoming ill. Quite the opposite, as a matter of fact, and to say otherwise would be to imply that my prior (or current) lifestyle is the root cause of my illness. I’ll grant “ambitious and active” but those two verbs are not, to me, negatives, but only what most of us want from our lives- meaningful work, and active engagement with other people and the world. So let’s ‘accept” that we need to set limits on what we used to be able to achieve without concurrently demonizing the lifestyles that pre-dated the onset of illness.
Whoa! I think you are taking the last sentence too personally! (In reviewing it, however, it does come across a bit strong.) What I mean to say is that many of us develop bad habits such as depriving our sleep at times, not taking rests and vacations, over-exerting at times, failing to get regular exercise, and not watching our diets. Any or all of these can be detrimental.
I am not sure Dr. Lapp if you are talking about “chronic fatigue” or ME. Truly I am confused, because surely you would not recommend these “lifestyle changes” to someone who is not able to leave his/her bed most of the time, or is barely able to venture out to the grocery store a couple of times a week for essentials, would you? Surely you would not simply tell someone who’s sleep for 10 years is as though he’s on strong caffeine with no deep sleep cycles no matter what he “endeavors”. “Set limits” on our activity? Severe limits seem to be placed on us already, Dr. Lapp, we have no choice. Really? A low level exercise program a priority? However, I am trying to read this with as much open mindedness as I possibly can. Perhaps you are speaking to mild ME folks, to help them avoid a deterioration to a more severe form of the illness. Maybe. So I make it all the way through until that last sentence, and I have to read it a few times to believe you actually said ” (probably unhealthy, self-destructive”)! And you know this to be true?? This is the insult that is the kicker for me. But then it IS possible you were directly this advice to a very different population – of distressed out chronically fatigued people who just need more sleep. Or maybe Simon Wessley or the CDC got to you.
Shirley, thank you for your insight and your excellent comment. You are correct. In this repsonse I am mostly addressing the 60-70% of PWCs who have moderate impairments. Those of you with severe impairments have to take a slower, more modest approach. You might want to read the comments by Dr. Irma Pinxterhuis in the IACFS 2011 Conference Summary (under the “News” section of this website). In her study of severely affected PWCs she concluded that they need extensive support from health care providers and others, social support, stress management, lowered expectations for themselves and from others, balanced nutritio, and healthy or whole foods. Pinxterhuis wrote, “they needed above all peace of mind and a feeling that they and their family were taken care of, so that they could use all their energy on getting better.” With respect to exercise, just lying in bed will not help anyone improve. We have special low level activities that we recommend for such individuals. These are both tolerated and helpful!
I have found that sleeping too long is as problematic as sleeping too little. Since changing to a 5-6 hour night, supplemented with a 2-3 hour nap in the afternoons, has made me far more functional, and a lot less sore.
Interesting advice, Perry! We usually recommend sleeping 8-10 hours per day, or 1-2 more than you used to sleep before the onset of CFS/ME/FM. This is due to less sleep efficiency in PWCs. Sleeping longer than 10 hours rarely increases deep sleep, only Stage 1 and Stage 2 sleep that are not restorative.
How can I have “an active, meaningful, and enjoyable life” when my savings run out? I have no work benefits, no pension. What an adventure it will be to live on welfare. Can’t wait for the exciting opportunity.
Can be hard to get to the place of acceptance, to quit fighting for your old life back. But once you get to acceptance the rest comes much easier! Thanks for the good advice!!!
Best advice I have seen. I live everyday planing my actives, so I do not crash
Hi. Anyone WTO knows The boxing cartoon? I would love to use that one in The me mastering trainings i do.