Humans of ME/CFS
I had been a GP (primary care physician) in the UK for 24 years, active and energetic. After a skiing holiday in 2012, I developed severe back pain and was diagnosed with an inflammatory growth on my spinal cord. This was removed and I worked hard to regain my fitness with walking and swimming. I was feeling overwhelmingly tired with neurological symptoms and muscle pains. The fatigue was worse than working a 48-hour shift with no sleep or bringing up four children while working seven nights a week as a doctor. Having been trained in the UK, I had been taught not to believe in ME/CFS so I kept pushing myself and got progressively worse.
After 4 months, I was unable to walk up the stairs and was sleeping 16 hours a day. I was referred to a neurologist and an endocrinologist. They excluded their areas of specialization and told me what wasn’t wrong with me! Eventually, a friend who is an osteopath told me she thought I had ME/CFS, but I was skeptical. I believed my training which taught this was a psychological illness for ‘lazy’ people. After online research, I realized that it ticked all the boxes. There is very little useful treatment for ME/CFS in the UK and I was referred for Cognitive Behavior Therapy. The counselor pointed out that I already had healthy thought patterns and offered mindfulness instead which has been very helpful. Graded exercise just made things worse so I stopped that.
I continue to read and research and manage my own condition using a Fitbit to monitor my heart rate and activity. I use meditation to calm down my sympathetic nervous system. As long as I limit my walking to 5000 steps a day, but no more than 200m in one go (I use a mobility scooter) and limit activities that require concentration to 3 hours a day I can manage my symptoms.
As someone who is used to pushing myself, this is not easy. There have been a few relapses along the way that take several weeks for recovery. I am now trying to educate my fellow GPs and trainee doctors to recognize ME/CFS early and encourage patients to rest. Earlier this year, one of my daughters was also diagnosed with this illness. Fortunately, we recognized this early and she has rested much more than I did. So far, it does not appear to have disabled her as much as I have been, so I am hopeful that she will make some sort of recovery.