Pearls of Wisdom from an ME/CFS Physician, part 1

By Dr. Lucinda BatemanBateman-4web

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

In this 3-part blog series, Dr. Bateman brings you some of her best advice on the treatment of ME/CFS, honed by her many years of caring for thousands of ME/CFS patients through the years…

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A nurse practitioner and fatigue clinic administrator are talking about burnout. The administrator groans, “I am so tired of slow scientific progress and of not being able to help my ME/CFS patients.” The nurse practitioner smiles and says, “I hear you, but I don’t agree that there is nothing that helps. Again and again, as I’ve become familiar with ME/CFS patients and their condition, they’ve told me they are so much better than they used to be!’”

This scenario reminds us of what we already know but sometimes forget: there are many ways to improve the situation of patients with ME/CFS, even if a cure is not yet within our reach.

True, there is marked heterogeneity (variety and individual differences) within the large group of people meeting the ME/CFS case definition. But when it comes to practical treatment advice, there are definitely some common truths or “pearls of wisdom” that seem to apply to almost everyone. The five “pearls” listed below have been used to teach medical professionals a simple plan of chronic management for ME/CFS patients. The plan provides a practical way to continually address ME/CFS symptoms that on the surface may appear complicated or daunting. This advice can improve daily function, at least until science identifies biomarkers and develops treatments directed at the physiology of the illness.

Obviously this plan of support is best implemented after other causes of chronic fatigue and pain have been evaluated and excluded, such as major organ disease or failure, metastatic cancer, autoimmune disease, severe eating disorders, substance abuse or mental illness. Epidemiology studies have shown that many patients debilitated by chronic fatigue have not consulted with a physician at all and, once properly evaluated, were sometimes found to have other more treatable illnesses.

The following pearls of wisdom aren’t listed in any particular order. Each of them are helpful in managing ME/CFS patient care. Hopefully they’ll help you identify areas you and your health care team can explore.

 

Pearl 1: Build emotional resilience

From day one of a ME/CFS diagnosis, it’s bad news. People around an individual with ME/CFS may not understand the illness, how it feels or what to do about it. At first a ME/CFS patient might receive attention, but as months go by without the kind of physical improvement people expect, those who once offered support may disappear. The ongoing physical limitations are accompanied by ongoing emotional trials. An acute illness is definitely traumatic, but most can muster a good fight while actively seeking a diagnosis and some type of rescue care. It’s living with the “C” in ME/CFS that really gets old.

ME/CFS can be especially punishing compared to other chronic illness. Because the symptoms are difficult to measure or prove clinically, they may be met with doubt or disapproval by those whose support is needed most. Because ME/CFS follows a relapsing and remitting pattern, in addition to feeling limited most of the time, patients can’t predict when they’ll feel even moderately better or worse. Because of the characteristic post-exertional symptoms of ME/CFS, an honest effort to function or simply have a little fun is often punished mercilessly by a relapse of pain, fatigue and brain fog. There are innumerable personal losses in the present and potential losses projected far into the future. Focusing on the loss can lead to a downward spiral that can impact life in very tangible ways.

In order to thrive, anyone living with ME/CFS must repeatedly rejuvenate the will to live and to find joy in living, even while chronically ill. It can be done! No one and no disease can take away the freedom to choose how to respond to a difficult situation.

ME/CFS patients need support in the form of strong advocates and cheerleaders when the going gets tough. Patients with a good support system in place do better over the long term because having advocates and cheerleaders builds up their emotional resilience and helps them to develop insight. This kind of support also helps them learn how to get out of an emotional slump, calm paralyzing fears, and to get back up and take one step forward. It’s important for them to cultivate the resources needed—among family, friends, counselors and medical providers—to stay as positive as possible.

Remember that much of what is known about ME/CFS physiology is centered in the brain, and the brain responds strongly to the mind. Emotional resilience can help lead to physical resilience.

 

Pearl 2: Achieve the most restorative sleep possible

ME/CFS patients usually agree the better they sleep, the better they feel and function. The trick is figuring out how to accomplish this, and the solutions definitely vary by patient.

Improved sleep immediately helps not only fatigue, but pain as well, and it probably improves cognition, mood, headaches and immune function to some degree. Natural sleep is always best, but the unfortunate fact is that most ME/CFS patients struggle with chronically disrupted and unrefreshing sleep that’s not easily fixed. There is no doubt that left untreated, even for a few days, sleep disruption worsens most aspects of ME/CFS.

Unfortunately there’s no perfect remedy for sleep. Practicing good sleep hygiene—such as consistent bedtimes and reducing caffeine intake—is imperative, but often not enough. Even the best of medications used for sleep have modest success, and some may even have adverse effects that can actually make sleep less restorative.

Sleep medications may change the architecture of sleep, alter daytime cognition or worsen fatigue, so they should be used in the lowest effective doses and, as much as possible, directed at the cause(s) of sleep disturbance. It may be useful to undergo polysomnography (a sleep study) if single drugs or low doses are ineffective.

If medication is necessary, it may be helpful for your health care professional to choose one that also treats other symptoms you may have. For example, while primarily improving sleep, drugs like Lyrica (pregabalin) or Neurontin (gabapentin) may reduce pain, and Elavil (amitriptyline) may keep IBS symptoms in check.

Achieving restorative sleep is an ongoing mission, but one well worth the attention.

 

In part 2 of Pearls of Wisdom – coming soon – Dr. Bateman will talk about achieving reasonable pain control and balancing physical pacing with physical conditioning. Then in part 3, she’ll discuss the importance of identifying and treating co-morbid conditions. Stay tuned to the SMCI Research1st blog to get the next 2 installments.

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Tags: , , , , February 9, 2015
  • Patty Ritchie

    Very helpful. I plan to share this with my husband.

  • clvrgrl777 .

    When I did my sleep study they recorded that I woke 53 times an hour. I didn’t believe them, it seemed ridiculous. It took a few years before I got to a doctor with experience concerning ME. For me Trazadone worked, and at 25 mg…50mg gave me a horrible headache…now I only wake 10 times an hour. The pain was greatly reduced with the improvement of sleep, and cognitive ability increased. Now if we could find a way to control body temperature that would help my sleep even more. Knowledge is power as we know and I am so grateful for this site, thank you.

    • Barbara Dambach

      I appreciate this comment, very much. My sleep difficulties resemble those described above. I was most taken by the reference to the use of Trazadone. I had been prescribed it, by a psychiatrist, about 2 years ago, as an agent which might help me with sleep. It did work to help me fall asleep and stay asleep for longer periods than before. What has been most outstanding to me, however, was a recent experiment I made on my own, i.e., no doctor’s approval). For the last month, I began taking 1 or 2, at different times during the DAY, when my anxiety level and almost complete brain dysfunction became simply too much to bear. And, I found it helped me tremendously!!!!!!!!! I not only become calmer, BUT my cognition, in ALL ways, improves dramatically!! In about 1/2 hour, I’m able to “think”!! I’m very aware, I may be putting myself at risk, somehow, by self medicating. But I intend to investigate this, online, and then run it by my neurologist or PCP — NEITHER OF WHOM RECOGNIZE ME OR CFS (!!), though quite afraid they will not approve and I will no longer be able to receive a prescription. I will update.

      • clvrgrl777 .

        Hi Barbara,
        First, may I say I hope each day gets better for you and that each of us has our own unique response to injury, medicine etc. Second, I think if it’s possible you should find a doctor/s that recognize ME and Fibromyalgia. May I suggest a Rhumatologist, and a female MD if possible. It was my Rhumatologist that suggested the Trazadone for my sleep, and she was the fourth specialist in as many years before I got an MD that knew her field very well. I don’t suffer and never have suffered from anxiety or any other psyc disorder. For me, I think, the disease was brought on by multiple horrendous car accidents. From the C3 down to the L4/5 I am now diagnosed as per my orthopedic spine specialist severe advanced degrative disc disease. For me a combo or Trazadone 25 mg. with 5 mg. of Flexril and 50 mg. Tramadol for my sleep. If I wake in pain in the 6 or 7 range on the 10 scale then I take a 5 mg of Flexril and don’t do much on those days. I do not take any meds during the day unless absolutely necessary. On top of that I do yoga every day and practice biofeedback to control my response to pain. Typing is actually one of the hardest things for me to do. Finally, I think experimenting with drug prescribed for you is okay. I did the same and my Rhumi agreed. Only you know your body and mind and its responses. Take pride in that and be firm with your questions. You have a RIGHT to be as well as possible. Please do update and again, all the best to you.

  • Anna Zapp

    Many thanks Dr.B for writing this blog and taking the time to share your wisdom and knowledge to help us with our daily struggles. I look forward to your next Pearls!

  • female avatar would fit

    Thanks for having this blog. I often get so frustrated with this illness and also have Fibromyalgia, Diabetes 2, even though I’ve lost over 100 lbs in the past 4 years. I have a lot of comorbid conditions and a truckload of pain. My doctor listens to me and has been so helpful with trying to get things under control. I am on a lot of medications. I had been diagnosed with severe sleep apnea when I was heavy, but I couldn’t tolerate using the masks and the noise from the machine kept me awake. When I had the test done to find out whether I needed oxygen at night or not, while at the hospital sleep lab, when they used oxygen, I slept the best I had slept in decades. The person conducting the test used the oxygen for the rest of the night. I couldn’t believe how great I felt. However the sleep doctor didn’t think I needed oxygen at night. I now use Elavil to help me sleep at night and don’t seem to snore like I used to, according to my husband. Your blog validates how I feel and I thank you.

    • Tracey

      Why did your doctor think you don’t need oxygen?

  • Tracey

    Has anyone mentioned the thyroid’s role in ME/CFS? I’m new to this thread.