- Resource Type
Most people with the illness are still doing too much….on the other hand,
perhaps 1 in 4 people are doing too little” Dr. Friedberg
perhaps 1 in 4 people are doing too little” Dr. Friedberg
Staying within that zone, on the other hand, will hopefully give your body the opportunity to help heal itself or at least not suffer further damage.
Two chronic fatigue syndrome experts from differing backgrounds (Staci Stevens – exercise physiology, Dr. Ken Friedberg – psychology) assert that most ME/CFS patients are doing too much.
Banking on It – The energy envelope relies of four central concepts:
- ME/CFS patients have a certain (very limited) amount of energy that they can use safely
- Using up your safe stores of energy triggers a reaction in the body that results in worsened health.
- Not using up your ‘available’ energy may help your body to heal at least to some extent.
- You can affect your energy stores by adjusting the amount and type of mental, physical and emotional exertion you engage in.
Staying within your ‘energy envelope’ may be an important factor in giving other treatments to work. Dr. Lerner believes lthat staying within ones physiological safety zone is important in the success of the antiviral therapy he uses. Certainly the effects of pushing yourself out of your energy envelope are clear to see. Push yourself into a flare and besides feeling exhausted your pain levels will probably increase dramatically, you’ll likely feel irritable, experience mood swings, have difficulty communicating, feel the need to isolate yourself, etc.
“My guess is that any new effective treatment will require lifestyle adjustments to get the best result.” Dr. Ken Friedberg, author, researcher, ME/CFS Patient
Dr. Jason had chronic fatigue syndrome patients use envelope theory techniques and recorded their symptom levels. His graphs vividly showed that as ME/CFS patients use up their energy their symptoms rise dramatically. On the other hand, when they were using the energy envelope techniques not only did their symptoms drop – dramatically – but over time their overall level of activity increased. Here was vivid evidence that lifestyle management techniques can pay off.
This is not to say that living within this ‘envelope’ is guaranteed to get you well. For many people it will lead to increased well-being and an improved quality of life but not a cure; for a few lucky, though, it may lead to health or set the stage for a return to health.
The Complications of Post-Exertional Malaise – It doesn’t help that the unique kind of fatigue found in chronic fatigue syndrome (ME/CFS) complicates the task of finding your energy envelope. While fatigue for most people is more or less immediate – that is, it directly corresponds to the activities they just engaged in and usually resolves fairly quickly the fatigue in ME/CFS is ‘delayed and prolonged’. This means it can take from hours to days for the severity of the symptoms triggered by an activity to peak, leaving the patient unsure as to which event triggered it.
Roadblock – Initiating New Lifestyle Patterns – Breaking lifestyle patterns can be brutally difficult even when your body is screaming at you to stop. There are many reasons most ME/CFS patients are living outside of their physiological safety zones; financial reasons preclude many from cutting back at work enough. The desire to contribute, to not to be a burden or to not appear weak is powerful. Men’s sense of self-worth, in particular, is caught up in their ability to produce.
Having a man to go from being a bread-winner or co-bread-winner to being dependent can be an absolutely wrenching adjustment. Women, on the other hand, find it difficult to cut back on their typical care-giver roles – and let go of many of their responsibilities. There are many compelling reasons for ME/CFS patients live outside of their physiological safety zones.
“Many patients are in a state of denial regarding their symptoms. They have to be in order to live their lives as they are accustomed and to meet the ordinary responsibilities of work and family” Staci Stevens, Exercise Physiologist, Workwell
Many higher-functioning ME/CFS patients may live almost completely outside their energy envelope; constantly symptomatic but not yet too ill to completely stop what they’re doing, they’re always pushing their limits. According to two ME/CFS experts – both of whom have chronic fatigue syndrome – most patients are doing too much.
The problem is that doing so has costs on your health and well-being. A recent study found that when patients stayed within their energy envelope that their fatigue severity scores plummeted and their physical functioning score increased significantly.
Importantly their ability to engage in activities increased over time as they stayed in their energy envelope. This indicates there is the potential not only for your quality of life but your health and thus your ability to function to increase using these techniques.
Finding Your Energy Envelope
One way out of this confusing situation is bring some order to it by charting your activities and symptoms over time in order to determine what triggers what. The easiest way to do this is by using an activity log.
The best resource for finding your energy envelope is easily The CFIDS and Fibromyalgia Self-Help website created by Bruce Campbell, Ph.D. Bruce Campbell created self-help programs for chronically ill patients before he became ill. After he became ill he created a self-help program designed specifically for chronic fatigue syndrome patients.
Hotpoint: the CFIDS and FM Self-Help course costs $20, lasts 6 weeks, is taught by trained peer volunteers via e-mail, and is given four times a year. It focuses on pacing but also address stress management, managing emotions, etc.
Bruce Campbell recovered using the techniques found on his website, in his book “The Patient’s Guide to Chronic Fatigue Syndrome and Fibromyalgia” and on his online course. In these venues Dr. Campbell walks patients through time-tested ways of determining the right amount and kind of activity for them. Among the many different aspects he covers are pacing, activity forms, logs and diaries, setting limits, activity plans, limiting relapses and other ways of managing your activities for better health.
The CFID’s and Fibromyalgia Self-Help website provides 10 different forms that can be useful in developing a healthy lifestyle and improving your health. Among others they include
In a Personal Guide to Living Well With Fibromyalgia Linda Frame offers another way of looking at the Energy Envelope concept. Picture your available energy each day as a bowl of marbles . Each marble represents a bit of energy. Determine how many marbles each task will take and then plan your day so that you have some marbles left in the bowl. If you feel inclined, it’s helpful to actually get a bowl of marbles and do this each day
“The process of accepting limits and learning to live a different kind of life usually takes several years.” Bruce Campbell, CFIDS Self Help
‘The things you do and the way you live have effects on your symptoms” Bruce Campbell CFIDS Self HelpEnergy Sapping Thoughts
“Most important is to reduce stress-producing activities in your life and replace them with stress-reducing activities. This leads to the greatest improvement over time.” Dr. Friedberg
Other tips – Bruce Campbell of the CFIDS and Fibromyalgia Self-Help website recommends patients incorporate stretching, yoga or Tai Chi exercises to loosen up stiffened, contracted muscles into their exercise program.
- Check out a post-exertional malaise (PEM) Toolkit designed to help you avoid the push-crash cycle.