Staying active can be challenging with Fabry disease and chronic pain

I remember first struggling with strenuous activity as a young boy in middle school. Even before then, I wasn’t as active as my siblings and friends. I avoided activities that required a lot of exertion and accepted that I couldn’t keep up. I remember getting tired quickly and overheating easily.

Although I was interested in school sports because my older brothers and many of my childhood friends were involved, I quickly realized my limitations. After short periods of physical activity, I would overheat, get red in the face, and experience gastrointestinal issues, pain, and discomfort. At that point, I didn’t realize that I was dealing with the effects of my inability to perspire and other common manifestations of Fabry disease.

Later, as much as I envied my unaffected brothers’ athletic successes and varsity sports jackets, they were out of my reach. However, I didn’t realize how important it would be for me to stay physically active throughout my life.

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Despite my physical limitations, I joined the U.S. Air Force at 18 and served 27 years of active duty in the Air Force and Army. I wrote about my military life in November 2020. I became good at overcoming my weaknesses at critical times so I could keep serving.

Even though I was a physical underachiever in the military and barely passed the periodic fitness tests, the training requirements kept me active. As my disease progressed, staying active became more challenging. I made up for my physical limitations by being good at my various jobs.

Fabry-related chronic kidney and lung disease, progressive heart failure, and other disease manifestations — including chronic pain, chronic fatigue, muscle weakness, reduced lung function, and shortness of breath — forced me to live a more sedentary life.

Chronic pain made it especially difficult to stay active. I have lived with chronic widespread achiness and frequent shooting pains, along with stinging, sharp, and dull pains from Fabry neuropathy for most of my life.

To complicate things, I have been diagnosed with spinal stenosis, sacroiliitis, and spondylosis. Many years ago, when I started having sciatica and lower back pain, presumably unrelated to Fabry disease, the pain was much worse and harder to manage, which made it even more challenging to stay active.

Fortunately, Tylenol takes the edge off and makes these issues tolerable. I’ve tried many other pain medications with limited success. Many of them cause brain fog, another common manifestation of Fabry disease that can interfere with my life and work.

I have also tried physical therapy, chiropractic manipulation, massage, acupuncture, spine decompression, cortisone injections, sacroiliac (SI) joint injections, and spinal epidural injections to combat the pain.

After another SI joint injection in September and another spinal epidural injection on Oct. 15, I hoped my high pain level — an 8 out of 10 — would subside. Instead, I ended up in a local orthopedic urgent care clinic on Oct. 18 with debilitating sciatica that radiated down my left leg. After more X-rays, I was prescribed a new non-opioid medication called Journavx (suzetrigine) and scheduled an MRI to continue addressing the underlying cause and possible remedies.

Thankfully, after the first dose of the new medication, I am in less pain than I have been in months. I am grateful for the relief, even if it’s temporary. I’ll be 72 next month, and staying physically active is more important than ever. Giving up is not an option. Exercise helps me manage my blood pressure, cholesterol, and glucose, and I know from experience that eating healthily, getting enough sleep, taking frequent brisk walks, whether outside or on the treadmill, and doing strength training despite the pain are crucial to my health and well-being.

I am optimistic that my healthcare team and I will find ways for me to stay active and keep living a great life despite the obstacles. I hope my experiences may help others who experience Fabry complications.

Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Fabry disease.