In this 3-part blog series, Dr. Bateman brings you some of her best advice on the treatment of ME/CFS, honed in her many years of caring for thousands of ME/CFS patients through the years…
Lucinda Bateman, MD, specializes in the diagnosis and management of unexplained chronic fatigue, ME/CFS and fibromyalgia. She is the cofounder of OFFER, the Organization for Fatigue and Fibromyalgia Education and Research and has served on the Solve ME/CFS Initiative’s Board of Directors in the past. In 2015, Dr. Bateman will be the lead clinical investigator on the $500,000 research study awarded to SMCI from the Falk Medical Research Trust. This award gives us the opportunity to further grow the SolveCFS BioBank and to extend the exciting results generated by SMCI funded investigator Dr. Patrick McGowan.
Learn more about the grant awarded to SMCI to fund this study HERE
Learn more about Dr McGowan’s SMCI funded research HERE
And access the paper describing his exciting results HERE
These pearls of wisdom aren’t listed in any particular order; each of them are helpful in managing ME/CFS patient care. Hopefully the information shared will help you identify areas you and your health care team can explore.
Pearl 3: Achieve reasonable pain control
Unrelenting or severe pain is physically and mentally exhausting; it disrupts sleep, worsens mood and prevents physical activity. These are all important reasons to work on reasonable pain control. It may be impractical to eliminate pain completely, so the goal is to push pain into the background, to feel more in control and less frightened by the pain. This can be done by both reducing the pain and by learning to manage pain psychologically.
The first areas to consider when pain escalates are related to sleep, emotion and physical activity. Remember that restorative sleep improves generalized pain. It’s also important to note that emotional distress such as fear, depression, guilt or grief can dramatically escalate pain and reduce pain tolerance. With ME/CFS in particular, overextending physically, such as attempting vigorous or prolonged exercise, can raise pain levels both immediately and for days afterward. Inactivity, such as staying in bed too long, can also increase stiffness and overall achiness. So when pain increases, first reexamine sleep quality, emotional health and physical activity.
The decision to use pain medications, intermittently or persistently, should be made carefully with a qualified medical professional and adapted to each individual situation. Always be sure that appropriate investigations have been done to understand the cause and/or nature of the pain, so that treatment can be directed and maximally effective. Some focal pain conditions can be treated very effectively with high-tech procedures. Fortunately there are a growing number of effective pain-modulating drugs for the broad spectrum of conditions that can cause pain. Finding the right medication for your system and specific type of pain is key.
The goal is to keep pain in reasonable control with thoughtful prevention and treatment, and to seek more intensive treatment from a specialist when this is difficult to accomplish.
Pearl 4: Balance physical pacing with physical conditioning
The most effective intervention for ME/CFS is learning to control the type, duration and intensity of activity to avoid a “crash” or relapse. This is called pacing, or avoiding the push-crash cycle, and it works. Every patient should become familiar with his or her own threshold of relapse, even when it seems like a moving target, and learn to avoid triggering relapse symptoms by keeping activity within a safe level.
On the opposite end of the spectrum, activity limitation can cause diminished strength of both the skeletal muscles and the heart muscle. Without enough use, these muscles actually atrophy, getting smaller and weaker as time goes on. This global decline in strength and stamina is called physical deconditioning, and unfortunately it’s often accompanied by weight gain as well. Being deconditioned can worsen pain, fatigue, balance/ stability, orthostatic intolerance and sleep, not to mention self-esteem. A thorny problem, deconditioning is not easily repaired because initial attempts to exercise invariably result in a flare-up or relapse of ME/CFS symptoms.
These factors make both pacing and physical conditioning important for people with ME/CFS. The objective is to carefully and regularly engage in a controlled level of physical rehabilitation that won’t trigger relapse symptoms. The trick is figuring out how to do it—and especially how to adapt to a changing threshold of relapse. Tolerance for stretching, strengthening and cardiovascular exercise varies widely among patients with ME/CFS. It’s helpful to start with these guidelines: short duration (five minutes), low intensity (not strenuous), adequate rest/recovery periods (even a day or more) and utilization of a position (reclining or in water) that won’t worsen orthostatic intolerance if that’s an issue.
The process of learning to effectively pace activity while still minimizing deconditioning can be a frustrating challenge, but it’s an effective and self-empowering tool when it can be accomplished.
In part 3 of Pearls of Wisdom – coming soon – Dr. Bateman will talk about the importance of identifying and treating comorbid conditions and we will make a single PDF of the entire 3-part blog available for free download. Stay tuned to the SMCI Research1st blog to get the next installment.
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