Pearls of Wisdom from an ME/CFS Physician, part 2

Bateman-4webBy Dr. Lucinda Bateman

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

In part 1, Dr. Bateman spoke about building emotional resilience and achieving the most restorative sleep possible. Read part 1 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.

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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 1 of Pearls of Wisdom, Dr. Bateman dealt with building emotional resilience and achieving the most restorative sleep possible. Read it HERE.

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.

If you want to be notified when a new post is published, sign up to follow this blog on the top right.

 

Tags: , , , , , February 10, 2015
  • Ramón G Castañeda

    DISLIKE intensely! It’s brimming with ignorance of the nature of consequences of ME.
    Sleep hasn’t brought me ANY relief for over 12 years. It’s an identifying characteristic of ME.
    “Physically activity”? Really? Stirring a pot of soup brings total exhaustion. I have to decide whether to eat, brush my teeth, take a shower or get dressed. Walking 25 feet to the bathroom to relieve myself is a daunting task; sometimes I don’t even make it all the way there in time because I collapse halfway down there.

    The ONE skill I really need is learning how to cope with ignorant people who have the nerve to espouse this ridiculous ideas.

    • female avatar would fit

      You obviously have a really bad case of ME/CFS. It sounds like you have Fibromyalgia on top of it along with quite a few other conditions. I’m no doctor, but what Dr. Bateman has said is true. Your case sounds like Laura Hilldebrand, the author of three books. She did most of her research from bed, on the computer, having people come to her and having her husband, who divorced her help her so that she could get the books written. They are brilliant.

      These are not ridiculous ideas. Have you gotten a Lyme Disease Test? Untreated Lyme Disease has made some people feel like they are going to die and they get their affairs in order because they believe their time has come to die.

      Have you had a sleep study done at a hospital? If you haven’t, then get one done. You could have severe sleep apnea. People die from sleep apnea. You might even need oxygen at night. When I exercise, it’s on my bed. I have to do things slowly and add on. I often hit a wall and am crippled with pain and can’t do much of anything. I’m surprised my husband has stayed with me since I got this disease. He unfortunately has CFS and Fibromyalgia too. He sounds like he has ME now as well.

      Maybe you should use a wheelchair or walker before you really injure yourself badly. My cousin’s wife has to use hers at times when things get really bad. She and we also use throw-away utensils, paper plates and things that keep us from having to wash too many dishes. Our house looks like pure hell. It’s dirty with dust and grime other than the kitchen area and the bathroom.

      Maybe you should read Pearls of Wisdom #1 because it really takes coming to terms with what you have to be able to cope with any of it. When we were in Florida and my Mom had died and my Dad was dying, once he could no longer be at home, where I was taking care of him, which was hard but rewarding, I crashed badly. I got out the gun and couldn’t find the ammo clip. I was going to go outside of our motor home and lay down in the grass and blow my brains out. I’m terribly glad that I didn’t find the ammo clip. I had to face reality and learn how to cope with it. Because of all the other conditions I have, which are numerous, I had to medically retire from a job I loved and people I loved working with, but I felt too sick, had to nap during lunch and sometimes take personal time and lock my office door so I could sleep some more. It just wasn’t working for me. It took help from my husband and a psychiatrist to help with the frustration, anger, rage, disappointment, knowing I’ll probably never be whole again, as far as what I used to be able to do. You need some serious help. I would pay heed to the way you feel so that you don’t even think about ending your life. You are so full of anger and resentment and I used to feel that way too. I’m also 27% permanently partially disabled in my right shoulder, arm and chest from a bad fall I had at a previous job over 30 some years ago. I had to learn how to deal with that too.

      • Janet Forsythe

        Yes but obviously since you were able to work, you had a very mild case of ME/CFS if at all. It could be due to your other health problems.

        Your post just seems more judgemental than helpful and actually pretty rude.

        I too have numerous unrelated serious health issues. I can tell you for me ME/CFS is by far the most disabling and frustrating. While I do have a few accommodations , such as a handicap placket and occasionally use a cane, I haven’t been fortunate enough to get disability since I can’t find a dr to treat or understand CFS. I can deal with my other limitations much more easily

        • female avatar would fit

          I am both ashamed and so sorry for my comments making you feel bad. It was not my intention to do so at all. I have not been able to work since 2006. I wish you had my doctor, who was not the one who diagnosed me, but does research on his own to try to give me the help I need. I do want to have a Lyme Disease test done because the last time I visited my brother and sis-in-law, we were using a plastic tick remover for over a week after coming home. I sent one to the health department and it was a common one for carrying Lyme, but had no blood in it to check. My foggy brain is very disturbing for me and my husband. Oh, it was a Lone Star tick (?) I think. The rest that had been engorged with blood made their way into the drain before I could grab one without falling.

          I was retired because I couldn’t make it through the day without taking a nap or going to the ER for a tension – migraine headaches for a shot of demerol

          I am having problems with balance and fall a lot. Thank goodness I haven’t broken anything. My husband does everything. He’s a better grocery shopper than I ever was. He still does all the cooking. I have lost 100 pounds for the second time of our 32How+years of marriage. I only shower when I feel like I can stand up that long and not fall. My husband is a saint. He’ll be in the bathroom with me to catch me if I start to feel like I am going down.

          I only mentioned the Lyme Disease testing because my friend’s husband went undiagnosed for about 20 years. My friend, who was a bridesmaid, took a leave from her job for a year to learn how to run his business, because he thought he was going to die. He’s not been the same since and the disease wreaked havoc on his health. He was the poster picture of health until this happened.

          Janet, I hope you can find it in your heart to forgive me. My husband says that I talk and write before thinking, not realizing that my thinking, in so many ways isn’t what it used to me. I am so sorry for coming across as badly as to hurt anyone’s feelings and for being rude. I sometimes feel like I am grasping at straws, along with my doctor to get the most efficient treatment. We had come across a drug called Capmist, but we’re unable to afford it.

          • female avatar would fit

            I meant to say demerol and Phenergan, for the shots need when I get a migraine – tension combination headache. I am a couch potato and my husband often makes sure that I am sitting on the couch before bringing my tray of dinner to me. I fall asleep often and have severe sleep apnea but can’t sleep with a mask or with the noise of the machine. Sleep is not refreshing anyway and hasn’t been since about 1997.

            Janet,
            Again, I am very sorry I came across as being rude and judgmental. I certainly didn’t mean for it to come across as badly as I did. I wish you all the best. I’m also praying for a cure.

            My state’s public employee retirement wages were cut off after 2 and 1/2 years. They didn’t give me enough time to get the medical documents together to send to them. We had been in FL taking care of my parents, who were dying. My Mom died from lung cancer 12-22-2008. I lost my medical retirement and had to go on my medically retired husband’s health plan at the end of the year. We went through all our money before I was eligible for regular retirement. Financially, it has ruined us.

            God bless you and your family .
            Most Sincerely,
            Peggy

          • greenini

            I am totally disabled with fibro/me/cfs, nmh etc, etc, etc. and have been ’94. I would suggest you investigate federal SSDI or SSI to see if you might be eligible for that. If you are, after 2 yrs you become eligible for Medicare. They will try to wait you out in hopes you will give up, but if you have good documentation and doc’s willing to help, it goes a long way. You might want to speak to a lawyer who handles these cases. they do not get paid unless you win your case and it comes out of the back money (or that was true when I got it, and I’m assuming you would not get it at first try). They called my lawyer the day before I was scheduled to have a hearing before an administrative law judge (3rd level of process) and so I think that might actually be the first time anyone really read my file!

            In addition, I want to recommend a shower stool to you for showering. Even my healthy 70 yo husband uses ours and they are not outrageously priced. If you’ve got family or friends who yard sale or thrift store shop they usually got for about $8 here, and even medical supply places are only about $30 or $40 i think. you might be able to get your health insurance to pay for one if your doc prescribes it for you.

          • female avatar would fit

            Thank you for sharing your thoughts and information. I am so sorry for the severity of your conditions.

            I am finally getting a retirement income, but both my retirement and my husband’s doesn’t make it through the whole month. My husband turns 70 in a couple of months and the next month, I’ll be 63. The temptation to sue our state retirement income for giving me a medical retirement in 2006, then taking it away in mid-2009 was devastating. We had to use our savings that we exhausted by the time I was able to get a regular retirement income.

            I’m still not able to work. It’s not fair that I wasn’t given enough time to get the medical documentations that I needed before the only extension they gave me ran out. I’m just too sick and so tired to do anything about it right now. I just don’t have the energy to deal with it all.

            I hope that a cure or better, and affordable, drugs are made available to use for people with our problems. Good luck to you and I hope everything goes smoothly and well for you.

          • Darlene Rhodes Roberts

            Also some churches has medical supply closets that loan such medical equipment out free.

          • Darlene Rhodes Roberts

            Have you look into the drug manufacturer for help? Some drug companies help patients that cannot afford high priced drugs. They work with your Dr. and some provide the drugs free. Look it up and maybe you can qualify. Good luck.

    • clvrgrl777 .

      I feel your every word. I think that half the time I would not function without all the lying I do to my circumstance.

  • female avatar would fit

    When it comes to exercise, it gets really difficult. It’s dangerous to walk out where we live. I can’t get to my treadmill because the room is packed halfway to the ceiling with boxes of stuff and it’s completely blocked off. We’re so poor that I can’t afford to get a mini-trampoline. I like using the mini-tramp because it doesn’t hurt my joints or my feet. I have severe diabetic neuropathy and spinal stenosis on top of everything else, so I have days when I’ve only added one additional sit up, while laying on my bed, and am in abject agony for two to three days, then have to start all over again at 3 and work my way back up. We don’t have gas money or other money for me to go to a gym or to town to walk at Walmart or Lowe’s at least 3 times a week, so I’m stuck here. We are in debt up over our heads and a lot of things that are possible for others to do, I can’t. I’d love to do some water aerobics, for example. I like to walk or jog in the water too. We can’t afford for me to go to the pool where we live because we’re behind a year and soon two in fees. So, it’s my bed and I try to help out as much as I can. I don’t know how my husband, who is 68 and has multiple health problems is managing to do all he does. He’s 6 years older than I am. He does the shopping, the cooking, and often the dishes. I try to do the dishes as much as I can. I try to help as much as I can. I realize I still need to work on my emotional resilience. I have Generalized Anxiety Disorder and PTSD and so does my husband. I wonder sometimes, how he can stand staying with me. We are each other’s soul mates and have been married for over 32 years. We talk about what’s bothering us and when one of us gets sick on top of everything else we have, we try to help each other out.

    • Diane Dicranian

      I’m not sure why you felt you needed to apologize Peggy, I found nothing offensive in your comments but a lot of truth and acknowledgement of your reality. It sounds like you are feeling very alone Janet, I’m so sorry. Sharing of resources, symptoms , medications and different approaches is very important, it is the only way a cure will ever be found. Patients and those who love and care for them will always be a special family.

      • female avatar would fit

        Thank you Diane. I guess she was really feeling I didn’t have ME/CFS, since I was able to work. I had to take a 1/2 hour nap at lunch, took a lot of sick time and was on so many medications that I began slipping behind in my job. I had to medically retire before I ended up having a heart attack. I had already had sudden cardiac death after my first shoulder surgery and was shocked three times before my heart started again. Then I was in and out of a coma for three days. That was in 1979.

        The stress of the job was killing me and when I was the first social worker arriving for the day and the hospital had called numerous times, I went. A 17 day old beautiful infant girl had been murdered. Nurses and doctors were crying, the doctor was in the corner of the room, looking like he was either going to faint or throw up. The two deputies from the Sheriff’s Dept. weren’t looking well either. I had my job to do. I had to examine the infant from head to toe and mark on an outline of an infant body, all the injuries all over her little body. She had weird bruises in all various colors, indicating that she had suffered from the time she left the hospital and was taken home. I had to write my impression or opinion of how she might have died. She was raped. That’s what killed her. She looked almost identical to my own baby sister who was born prematurely and died on her third day from underdeveloped lungs. In 1965 they had no way to save her. When I was finished, my previous supervisor came in to take over. I had one of the deputies walk me to my car. I had an inner ear infection that was making me look like I’d had a few too many. The psychological impact is still as vivid today as it was in over a decade ago. I was barely aways down the street when I had to pull into a parking lot and cried for over two hours before I went back to work. Why I have brought this up, I guess is because I don’t know what all Janet has experienced in her life but she was not in my shoes either.

        Sorry about going on so long, but for some reason this has been in my mind this week more than usual and I have been nauseated and can see, feel that sweet baby in my hands and I think I am overdue for another xanax. My PTSD and Anxiety Disorder is really bad for some reason today.

        Thanks for your reply. It did make me feel better about what I had written to her.

        BTW, I used to belong to a fibro +room that Hillenbrand belonged to. One day when a bunch of us were in the room, she said she was leaving the room because she had a great idea for a book. She wrote the book about Secretariat, the only horse for decades to win the triple crown. Then it became a movie! It was her first book. I knew back then how much worse she was than the rest of us that had fibro , CFS and other health problems. I was telling the truth about that.

        • Diane Dicranian

          Interesting, my partner was also in medical field, a background that makes a terrible patient to care for. Many of our disagreements are me saying “that’s not what you would tell a patient to do…”. We live in Maine and there are no groups for ME/CFS patients or supporters which has made my partner feel very isolated, it sounds like your group provided you with extra strength when you needed it, do you still belong to a group? I wish there was a group for caregivers.

          Janet—-hope you are feeling a little better, at least a tiny bit.

          • female avatar would fit

            ay

            Diane, I’ve belonged to a group called Fibrohaven for a long time. Sometimes caregivers come in. They might take you if you tell them Peggy Tree or ppmickey, which they know me better by, recommended you. Also, I’ve noticed there are groups on Facebook, like Fibrohaven is, for people with Fibromyalgia and ME/CFS(SEIDS) and all sorts of other conditions in nearly every state. In some states, they are by region. You and partner could get involved in one of the Facebook groups, although I prefer the previous method when we used to have a room that was open and there were people in it all the time, even from as far away as Australia and a few from Russia and I think, one from China. Sometimes all you can do is message and wait a day until you hear something back. Facebook is not all it’s cracked up to be when it comes to so-called chat rooms. It is, however, better than nothing.

            Also, some people have come forward in different counties and meet at smaller hospitals and sometimes have doctors, or Assistant Physicians are sometimes invited to speak and they can ask questions, talk, argue, whatever.

            Laura Hillebrand is one helluva woman. Mostly bedbound the entire time she did “Seabiscuit” and then wrote “Unbroken”, both of which are major movies, was incredible. We never saw her back in the room which eventually fell apart. There was also a cost to keep it open. Sadly, her husband has divorced her after sticking with her for all those years. Unbelievable.

            You might even want to try some nursing homes in your area. Sometimes they have caregiver groups. I went to one in Nokomis, or Venice, Florida when my Dad was dying. I was so sick and actually collapsed twice after visiting Dad at the Memory Ward, which was very nicely done, keeping patients busy all day, doing physical therapy and cognitive activities. I found the group exhausting. I had too many health problems of my own and would unload on the psychiatrist I had for PTSD and Anxiety Disorder. I collapsed twice after seeing my Dad and quit going to the meetings. It was just one more thing, kind of like breaking the straw on the camel’s back. Sometimes partners are better apart. I’ve seen many relationships over the past 15-20 dissolve under the pressure. My husband was my link to sanity when I got back to him. He was down there with me and he lost his Mom to Alzheimer’s exactly two weeks after I lost mine to lung cancer. I have some really crappy genes and so does he.

            My hubby gets involved in two on-line games with buddies he’s been playing online with for 10 years now. He naps when he needs to, which seems to help sometimes. He and I can get equally as crabby as the other and end up apologizing. We just try to make it through each day and hope for the best. He has some serious Rheumatoid arthritis problems and sounds like he has COPD, which his Mom and my Mom had. He’s smoked non-filter Camel cigarettes since he was 13 and he turns 69 in Oct. this year. I’m really worried about him. We can’t even afford to get Medicare right now. My doctor only sees me four times a year, unless something really goes wrong. He’s got my medications tweaked pretty well now. I make myself as knowledgeable as possible about my conditions and he seems to be doing some research in his spare time, which has really impressed me. Something that may help is a drug called Capmist. You can get it by prescription but insurance won’t cover the cost. If I was still healthy enough to work I wouldn’t be without it. It has the same ingredients as Delsym cough syrup with guifaisen (SP??) in it. Made me feel so much better and helped with allergies and asthma.

            Being patient, no pun intended is key. We can both grate on each other’s nerves at times.

            Good luck. Let me know what you find out.

            Janet, if you are still coming in, I hope you are feeling better too.

            Sincerely,
            Peggy

          • female avatar would fit

            Leave me alone.

          • Diane Dicranian

            Just seeing this, Peggy, Janet are you still here?

          • female avatar would fit

            Look up Fibromyalgia, ME/CFS or CFIDS, or some ate now calling it SEIDS, for Maine. Some states have several groups on Facebook.

  • Janet Forsythe

    I’m just not sure about the exercise. I’ve practiced pacing for almost 20 years and actually do go for walks etc if I can but I don’t see any improvement in my overall ability. Actually it’s gotten worse in that my immediate PEM syptoms are much worse than they used to be(, mostly neurological ie loss of balance, cognition, rapid loss of muscle strenght), maybe twice a month walk for a few blocks, sit on a bench, walk another few feet, sit on a bench then spend the next few days on the couch. That is hardly enough to counter deconditioning but all I can do. If I walked 5-10 mins everyday I’d be in much worse shape. Been there, tried that, regretted it.

    I know my limits, too bad the medical community continues to ignore that fact and assumes I can’t possibly know myself.