ME and OI

I have made a new discovery in my continuing quest to find out what is wrong with me. I was cognizant of orthostatic intolerance as a medical condition but until recently the thought that it had anything to do with me was far from my mind. But I have learned more about it through following Sue Jackson’s blog Learning to Live with CFS: Heart Rate and Post-Exertional Crashes in CFS and Orthostatic Intolerance

The old wheels started turning and I began to explore and research OI. I started to keep track of my pulse and discovered that it did indeed race when I was standing or even sitting upright at a desk. This is known as postural tachycardia syndrome (POTS) and is one of the common forms of chronic orthostatic intolerance. I bought a heart rate monitor so that I could keep better track.

What it comes down to is this basic formula:

When the numbers are down = feel good
When the numbers spike = feel lousy
When the numbers spike for too long = post-exertional crash

It is nice to feel that I have some control now. When I don’t feel good (headache, fatigue, lightheadedness, brain fog) I can correlate it with my upright posture and increased heart rate. I get relief by adjusting my posture; sitting cross-legged or with feet elevated, crouching, reclining or lying down. I can also use my heart rate monitor to take note when the numbers are going up and change my posture to prevent the painful symptoms.

I now wonder if my health problems are due to orthostatic intolerance rather than myalgic encephalomyelitis/chronic fatigue syndrome. Or maybe it is just that OI is part of ME/CFS.

It would be very comfortable for me to adopt the Japanese custom of sitting on the floor at a low table.