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.

ME and High Altitude

We returned from two lovely weeks in Florida last weekend. We had a glorious time of warm sun, balmy breezes, beach walks and nights falling asleep to the lullaby of waves. It was a great respite from the long winters that we have here at home. Colorado has a great climate—temperate summers, golden autumns and pleasant winters (I don’t mind winters of reasonable duration filled with the beauty of snow!). But spring in the Rocky Mountains is a different story—just one long extension of winter.

But shortly after arriving home I crashed. In spite of my time of rest and relaxation in Florida I am experiencing fatigue, headache and general malaise. Due to ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), I always have a hard time adjusting back to high altitude after a trip.

High altitude means less oxygen and in my case, less oxygen exacerbates my symptoms. When I travel to low altitude places, I feel much better. We are seriously considering moving.

The nature of ME/CFS is such that the cells of one’s body fail to receive or use the oxygen they require. This raises the question; could routine oxygen therapy be helpful to those who suffer from ME/CFS? In my continual perusal of articles and blogs regarding anything that is about ME/CFS I have run across a few references to this. But it is by no means a commonplace treatment.