I delivered this talk at the MS Hope for A Cure Research and Wellness Symposium in New York City, May 7, 2017. http://www.mshopeforacure.org/2017-research-wellness-symposium/
One recent Sunday morning I stood in church on my new hip. I planted both feet in the wider stance my physical therapist taught me, supported by muscles I’d rebuilt in the year since surgery. I stood strong. Until the gospel reading went on. And on. I missed my cane. It supports me when MS makes my legs wobbly. It also serves as a badge: I have a problem. If I do something unexpected, there’s a reason. So, without my badge, I kept standing. The sermon also lasted too long. A woman fidgeting annoyed me. The stifled coughs and smell of Hall’s from the man next to me took on unreasonable ominousness. My foot itched, my forearm became numb, my pinky tingled, and the left side of my face tightened. No one here will be surprised that I slipped out early. I drove home to my comfy chair to contemplate how to manage the subtle, but unremitting, dictatorial power of fatigue for someone with MS.
Thank you to Elissa (EJ) Levy, MS Hope for a Cure and iConquer MS for making it possible for me to come to speak today about my favorite and most hated topic: fatigue.
Since my diagnosis in 1993, I’ve found excellent articles on MS fatigue on medical websites and in blogs by people with MS. Academic studies on fatigue abound. Ten were published so far this year. In their literature search, one of these authors found 234 relevant studies.
You know about fatigue. Heat makes it worse. Scheduled rest makes it better. Exercise in intervals helps. Too much activity can bite you the day after and sometimes for days. Yet researchers have not yet found a reliable measure for fatigue. And no commonly accepted bio-chemical explanation has emerged. On the other hand, we have studies that show a qualitative difference between MS fatigue and typical tiredness. They’re not the same thing.
I’m fascinated by aspects of fatigue researchers have not been able to tease out. For this reason and others I’m delighted to be on the iConquer MS research committee. The information iConquerMS collects gives us the chance to leverage the power of large collections of data to explore the experience of people with MS in new ways. Please sign up. This collection will allow us to look more closely at some of these subtleties.
Take the effect of co-morbidities, for example. A co-morbidity is when another illness exists with MS: Diabetes, or arthritis, fibromyalgia, sleep apnea, or another condition that needs management. A diagnosis of MS increases the odds that you’ll have a second chronic disease or more. We don’t know why. We do know it makes our lives more complicated.
Since 2004 hip pain reduced my mobility. I blamed it on MS spasticity. Everyone did: me, my wife, two primary doctors and three neurologists. By 2007 I’d reduced my professional activity, by 2012 I stopped visiting retirement communities and by 2015 I closed my practice. While fatigue and other symptoms forced the final decision, the pain from the co-morbidity of severe arthritis accelerated my path to disability.
The pain made my fatigue worse. Everything required more effort. More time. The meager exercise I scheduled became impossible — and we know now that carefully measured exercise can help manage fatigue. Another co-morbidity, heart disease, worsened because I couldn’t exercise.
Why do co-morbidities impact MS fatigue? Because we can’t always blame our symptoms on MS. When we do, bad consequences can result. I blamed the symptoms of heart disease on spasticity for over a year and MS delayed my diagnosis of a severe arthritic hip for close to a decade. Once diagnosed, the treatment of the other diseases improved my fatigue.
Frustrating, right? Add that frustration to the emotional quagmire of living with MS — another subtlety of fatigue. It’s true that depression makes fatigue worse. But fatigue also causes depression. It worsens negative emotions. If you tend to blame the outside world for your troubles, fatigue will make you grouchy, irritable or paranoid. If you tend to blame yourself for your problems, fatigue can cast you into a well of self-doubt.
Emotional signals are the first sign that tell me I need to find a recliner in a quiet room. Sometimes I’m irrationally irritated with people. Other times my memories shift from pleasant, innocuous events to an internal recital of the most humiliating moments of my past. I’ve had full days when I resemble a person with major depression. But after a rest day and a good night’s sleep, I rebound to my normal curmudgeonly self.
This conversation between fatigue and mood has not, to my knowledge, been addressed in research. Depression may be a co-morbidity. Or it may only be that we look depressed because many of us operate at the very edge of our capacity and spend most of our time fatigued. This has real life consequences. For example, people with MS are more likely to divorce. Most frequently we blame the well-spouses who are unwilling to tie themselves to a potentially disabled partner. What if our fatigue-worsened emotional states make fragile relationships worse?
Another study shows that people with MS report twice as much unexpressed anger as the average person. Is this because we face greater fears and challenges? Or are we angry because we exist in a fog of fatigue, forcing ourselves to act as healthy as we look?
When someone tells me I look good, I joke that MS doesn’t make me ugly. But sometimes my mood gets ugly, and there have been regrettable consequences, words I’d like to take back, conversations I wished I’d finished earlier — if only I’d realized the extent of my fatigue.
The day after my post-church crash was what I call a ‘fatigue day.’ Despite nine hours of sleep, I tried to go to the gym, but left early, headed home to my chair, and binge watched old DVDs. I texted my wife to pick up a rotisserie chicken and roused myself to pull together a few other items for supper.
My wife never complains about the meals I plan, not even when they’re awful. But the text I sent was a burden for her, one that went beyond a stop on the way home. Instead of focusing completely on her scheduled patients, she worried about me and the state I’d be in. Fortunately, we knew I’d be better the next day and, after living together with this disease for over twenty years, I knew she understood.
MS is a family disease — its effects on families is another fascinating subtlety. The impact on families became dramatically clear for me at a meeting with my MS Men’s group. We invited our spouses and significant others to join us for a general discussion. I expected to answer questions and help the men in my group describe their symptoms to well meaning, but ill-informed family. Instead I got an education in how well loved ones already understood MS and how much they covered for their beloved.
At the pivotal point of the meeting, one spouse described how unfair she felt it was for her husband to push himself to do yard work and chores that could be handled by other family members. She asked, “How do you think we feel when you end up unable to eat dinner with us, or when we need to cancel evening plans because you’re too fatigued?”
Family priorities belong high on the list when we choose how to spend our limited energy. I say this, not for any moral reason, but simply because staying connected to the people who love us is good for us. People with chronic diseases who have supportive social networks do better than those who go it alone. Not everyone has the choice. But, when they do, it should be a priority.
The effects of MS are subtle and complicated. When you’ve seen one person with MS, you’ve… seen one person with MS. It affects each of us differently. Even though fatigue is the most disabling of MS symptoms, not everyone with MS experiences it. Sometimes medical treatments can make it tolerable. But most effective will be your own understanding of how fatigue creeps up on you, the best ways for you to manage, and your own personal warning signs.
Co-morbidities, fatigue generated emotions, the effect of MS on families: these subtleties and their unique impact on individuals are three of the many things about MS that torture and fascinate me.