Friday, April 29, 2011

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.


2 comments:

Morning Coffee said...

Maybe we should move to Japan.

Renee said...

Glad you found Sue's posts on OI so helpful. She is very good at giving us good information that is beneficial to our journey with ME/CFS. Having this piece of the puzzle must be empowering. God bless.