We have one week left of out HealthTree Moves September Fitness Challenge! You can still join this and more upcoming challenges in the HealthTree Moves App:
For me, spring has often been a time to take a fresh look at my exercise program. The spring of 2019 was no exception. My daughter Kate had coached me through a couple of 5Ks the year before, and I was excited to start a new running program. However, even though I scaled back my distance and time, I found it increasingly difficult to run due to shortness of breath. The dyspnea worsened to the point that I was passing out six to seven times a day. At the same time, I also developed chronic diarrhea and pain in my extremities. It would be two years before I would be properly diagnosed.
Initially, my medical team didn’t see a connection between my symptoms. Throughout the summer of 2019 and into the fall, I had cardiac, pulmonary, and gastroenterology tests, all of which yielded normal results. I continued to seek answers with many different specialists into the following year. Throughout this time, my myeloma specialist was monitoring my condition. Out of concern that my maintenance medications could be contributing to my symptoms, he had me stop treatment. However, my symptoms not only continued—they worsened.
Thinking the episodes of dyspnea were panic attacks, one of my doctors prescribed medications for anxiety, which not only did not help but eventually led to an eleven-day hospitalization for a serious medication reaction called serotonin syndrome.
After eleven days in the hospital, I came home weak and deconditioned. My gastrointestinal symptoms culminated in a weight loss of 51 pounds, and my pain seemed to increase daily. This occurred during the height of the COVID-19 pandemic and I had been allowed no visitors while in the hospital. The nurses and doctors called my family daily to provide updates. At one point, my family was told that I might never come home. Another time, they were told that if I did come home, I would be in a wheelchair and would never walk independently again.
My family prepared for my homecoming by borrowing a wheelchair, building a ramp, and preparing a place in our family room for me to sleep. It would be five months before I had the strength to climb the stairs to our bedroom. I was told to connect with a neurologist specializing in autonomic disorders. This was difficult because there are very few autonomic specialists and so many had been called to the front lines of the COVID pandemic. Even with a referral, my wait time to see a specialist was nine months with additional long waits for the necessary diagnostic tests.
My myeloma specialist was the first to consider that there might be a common denominator to my symptoms. He suspected amyloidosis for which I tested negative, but this train of thought helped us begin to see a relationship between several seemingly unconnected symptoms. After many other appointments and tests, I was diagnosed with an autonomic nervous system disorder called postural orthostatic tachycardia syndrome, or POTS.
POTS is a form of dysautonomia that affects the flow of blood through the body. Upon standing, an individual who has POTS experiences an increase in heart rate, dizziness, and sometimes fainting. POTS is often called an invisible disease because the symptoms are so subjective. Because POTS is often associated with small fiber autonomic neuropathy, symptoms can include headache, nausea, diarrhea, chronic pain, fatigue, shortness of breath, sweating abnormalities, sleep disturbances, weakness, heart palpitations, and exercise intolerance. My diagnosis finally provided a connection for the constellation of symptoms I had been experiencing for two years.
There is no cure for POTS, and treatment focuses on symptom management, including measures such as increased salt and hydration, medicines to modulate blood pressure and heart rate, compression, and exercise.
A key symptom of POTS is exercise intolerance; POTS patients have a higher heart rate and a lower peak oxygen uptake during exercise. Many patients have difficulty maintaining an upright position. A lack of movement and deconditioning exacerbate symptoms, which means that exercise is a critical component of treatment. Exercise helps to expand blood volume and increase cardiac muscle mass and heart size; these factors are associated with an improvement in symptoms.
Fortunately, my cardiologist was familiar with POTS, and he immediately referred me to physical therapy while I was waiting to see a neurologist. My family had “forgotten” to tell me I wasn’t expected to walk again, so I began therapy assuming the best. After several weeks of therapy, I was taking slow, unsteady steps while holding on to a walker for balance and support. I progressed to using a cane and slowly increased my walking distance to the length of our driveway.
I was also dealing with increasingly severe pain in my feet, legs, hands, and arms. My family reached out to a prominent palliative care physician, who prescribed a multifaceted approach that included medication, meditation, acupressure, and regular exercise.
During the first appointment with my neurologist, the importance of exercise was again stressed. POTS patients are advised to use a structured exercise program that is designed to minimize symptoms while building endurance. For the first couple of months, exercise is done in a recumbent or horizontal position. Most patients find that as they build cardiovascular endurance and strength, their symptoms improve dramatically. In fact, one study found that strengthening the muscles of the lower body along with consistent endurance training resulted in a complete remission from POTS symptoms for many patients.
A fitness challenge is an opportunity to set goals and join with others who want to make exercise a healthy habit. I’ve been thankful for the motivation, accountability, and encouragement that the HealthTree MOVES challenges have provided and the way that they are intentionally designed to meet patients where they are, regardless of fitness level. Even when I was limited to what I could do lying in bed, I could participate in a challenge by tracking the minutes that I did my prescribed exercises. Tracking and entering my minutes on the app provided accountability and a reminder that I wasn’t alone. By entering my minutes, I could celebrate my achievements, no matter how small. I could also marvel at and be inspired by the accomplishments of others who participated.
When I’m participating in a HealthTree MOVES challenge, I’m more intentional about exercise, making it a priority rather than something to do “if I have time” or “if I feel up to it.” Today, thanks in part to the HealthTree MOVES challenges, my goals are different from what they were a year or two ago. I can’t yet climb a mountain, but I can climb the stairs in our home. I’m still not able to run a 5K, but I can easily walk a mile. Most days I can stand long enough to prepare a meal, and the trekking poles at the back door remind me that I’ll soon meet my next goal of being able to hike again.
Paula volunteers her time and share her experience as a HealthTree Coach. Her unique and varied perspective helps others navigate their own complex and personal myeloma experience.
about the author
Paula is a myeloma patient who was diagnosed in 2014. As a Coach with HealthTree, she considers it a privilege to walk alongside other patients, sharing information and encouragement.