When I was 22, I caught the “high school kissing disease,” mononucleosis (aka mono or glandular fever). I was traveling at the time, and as soon as I got home I just knew I wasn’t just dealing with jet lag—something wasn’t right.
A quick trip to my doctor and a blood test confirmed I had active mono in my system. The Epstein-Barr Virus (EBV) is the most common cause of mono, and, as it turns out, EBV is incredibly common. In fact, 95 percent of Americans get EBV by the age of 35. However, not everyone with EBV gets mono—some just carry the virus.
“Viruses never die,” says Bindiya Gandhi, MD, a double board-certified functional and integrative family physician and medical director of Revive Atlanta MD. “Once they’re in your body, they live dormant, or they can sometimes reactivate, which then makes the situation worse. In an instance of extreme stress, viruses sometimes can reactivate and resurface.”
Over the next few months, I continued to be more or less bedridden, even when on paper I’d been deemed no longer contagious and on the mend. A mere five minutes on the stationary bike at the gym would send me crawling back to bed, whereas previously I was waking up at 5 a.m. to sometimes even do back-to-back HIIT, bootcamp, and cardio classes. The fatigue was just not improving.
My diagnosis completely affected my ability to exercise
It was at this time my doctor told me that my mono had likely progressed into chronic fatigue syndrome (CFS). This was confirmed through various tests, including an adrenal panel that had me collect multiple vials of saliva over 24 hours.
“Long-term affects of mono can lead to CFS, and unfortunately, when viruses are dormant in the body, this can also increase the risk of bringing autoimmune conditions to the surface,” Dr. Gandhi explains. “Of course, there are many factors, including genetics, stress, and lifestyle that may or may not trigger these issues.”
All I wanted to do was get back into working out the same way I had been and live the social life I was used to, but I just physically couldn’t. Unfortunately with CFS, there’s no fix-it pill to get better. The results from my adrenal panel showed that I was waking up with the same amount of energy that someone who’d had a taxing day was going to bed with—so barely any.
This meant my typical morning workouts were off the table. If I were to do them, I’d likely deplete my entire energy source for the day. So for a while, a slow afternoon walk was all I could manage.
“Incorporating exercise into a routine for someone with CFS requires patience and self-compassion.” —Jacqueline Kasen, CPT
Things have gotten better, but I’m still learning to manage my chronic fatigue syndrome
I’m happy to say things have drastically improved for myself over the past few years. However, my CFS still isn’t dormant. At the time of diagnosis, it was the period of finishing college and starting my first big girl job—a newsroom reporter. And if that wasn’t enough, the position meant I was on a week-on and week-off roster between day and night shifts.
Beyond the CFS, the shift work and constant time changes made me feel like I was in a state of never-ending jet lag. My muscles and joints were constantly in pain, I was dealing with intense brain fog, and my insomnia was off the charts. This went on for a few years, and every doctor I saw said the same thing: “Unless you stop and slow down, it’s never going to get any better.”
The best thing I ever did for my CFS was to go freelance so I could work for myself and dictate my own hours. Previously, every couple of weeks I’d have what I’d refer to as “the CFS crash,” a period of 48 to 72 hours where I was physically unable to move. I was in so much pain and was just physically, emotionally, and mentally drained. The crash was a buildup of all those times listening to my body came second to pushing through my daily routine.
I understand not everyone has the luxury to go freelance or take an extended period of time off, but I’ve seen significant improvements by putting my health first. I no longer get up at 5 a.m. to work out and I sleep as long as I need (typically 10 hours), but I usually have to lie down to rest at least once a day.
Having had CFS for many years, I’ve also learned the warning signs my body gives me to tell me I need to slow down. This is very individual, but a sharp pain in my left elbow and both thumbs are my indicators. But sometimes when there’s a lot going on in my life, I still neglect those signs—it’s those around me, like friends and my therapist, who have to remind me to take it easy.
Can you still exercise with chronic fatigue syndrome?
I eventually went back to the gym following my CFS diagnosis and worked closely with an exercise physiologist to create a program that worked for me. “The top priority is to prevent overexertion and reduce the risk of post-exertional malaise,” says Robert Sliteris, AEP, an accredited exercise physiologist and director of Body Priority. “It’s important to utilize graded exercise therapy, which begins with very low-intensity activities that gradually increase in both duration and intensity.”
A challenge when it comes to CFS and exercise is the unpredictability of energy levels, which can lead to becoming reluctant to exercise at all. “[People] may experience debilitating fatigue that makes even light activity feel overwhelming,” says Jacqueline Kasen, CPT, certified personal trainer and creator of the Kasen Method. “With this, it’s important to encourage a pacing strategy, set realistic goals, and use short, manageable activity sessions followed by ample rest.”
Sliteris agrees and adds” “The fear of worsening symptoms often leads to avoidance of exercise altogether. I focus on educating clients about the benefits of gentle, incremental exercise and a gradual approach to help them overcome reluctance and improve adherence to their exercise plans.”
Everyone’s journey with CFS varies, and my best advice to those struggling would be to learn to be adaptable and listen to your body. Working with a trainer who understands CFS is also a good idea, if possible. “Unlike conventional fitness routines, you need to have a plan that’s adaptable daily based on how you feel rather than following a rigid progression,” Sliteris says.
For myself, I primarily moved from high-intensity workouts to low-intensity exercises, like walking and Pilates. Sure, now that my CFS is a little more manageable, I throw in something a little more intense like running every now and then. But I know resting afterward needs to be a priority.
“Incorporating exercise into a routine for someone with CFS requires patience and self-compassion,” Kasen says. “By starting slowly, listening to the body, and focusing on enjoyable activities, individuals can gradually build a sustainable exercise routine while managing their symptoms effectively.”
