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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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the illness name

When I was treated for cancer, I had to go for radiation treatment five days a week for seven weeks. In addition, I had to go to a different office once a week for chemotherapy. This was very hard on me, and made worse by my ME/CFS. The most difficult was dealing with orthostatic intolerance. When I’m standing I feel like I’m about to pass out. When I’m sitting I feel very lightheaded. And with both it’s not simply the faintness. I also start to feel physically ill. I explained this to the doctors and medical staff at both offices. I presented it as a symptom of chronic fatigue syndrome. They didn’t seem to care. They did nothing to make it easier on me.

Years later, my primary care physician sent me to a cardiologist to see about my lightheadedness. The cardiologist ran some tests and diagnosed me with autonomic insufficiency. He added that this is causing orthostatic hypotension. He explained that my heart is not getting enough blood to adequately circulate to my body. And so the lack of oxygen being sent to my head is causing the lightheadedness.

A few months ago I got appendicitis and went to the hospital. I explained to the hospital staff about my orthostatic problems caused by autonomic insufficiency. They showed great concern and were careful not to keep me standing too long. I also explained my diagnosis where I get my oncology follow-ups. The doctor was very concerned and assured me that from now on they would take me from station to station in a wheelchair.

My orthostatic symptoms remained the same. The name of the illness changed. And the way people treat me is as different as night and day.


So sad but such a great thing to share your experience with others. I have always tried to avoid the dreaded name at all costs but with your info, I will use the ortho issue as a the main thing when dealing with docs.

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