Recap and Moving Forward

Here’s what I’ve learned, or been told, so far:

– I have been diagnosed by a rheumatologist as having Chronic Fatigue Syndrome (ME/CFS) after being tested for everything else under the sun.

– ME is caused by sudden infections, and/or PTSD. I had flares of Epstein-Barr in 1997 and 2001. Epstein-Barr is often connected with Chronic Fatigue.

– When my symptoms were at their peak (and I’ll share those with you soon), I was told I had: age (you’re 40+ and these things happen), allergies (if I ever see that ER doctor again I promise to knock her teeth out), a virus, Fibromyalgia, and finally Chronic Fatigue.

My rheumatologist drained me of blood checking for anything possible. Nothing showed up. No inflammation. No confirmed markers for things like Lupus or Lyme Disease.

My neurologist was concerned. Being my typical self, I put off going to see him as long as I could. When the cognitive issues, vertigo, and slew of other issues were more than I could bear, I finally went in.

He had an MRI done. It showed degenerative disc issues in my cervical spine (as well as a slightly deviated septum). He sent me to a neurosurgeon who recommended ACDF (to be discussed further later).

I had the surgery on June 5, 2018. I barely remember any part of my hospital stay. Certainly that was partly because I was drugged to the gills, but I think cognitive failure was a part of it. I was in ICU for a day because it took them twenty minutes to intubate me and they were concerned about my breathing. I remember a nurse in ICU trying to run down a list of my daily medications and thinking, “You might not want to ask a patient with signs of dementia who is hopped up on residual anesthesia, pain meds, and muscle relaxants.” I have no idea if that list was anything close to correct.

More on the surgery later…..

The next step was to have a sleep study. I did an at-home study which was bad enough that they squeezed me in pretty quickly for an in-hospital test. The results showed that I was having apnea events 66 times per HOUR! Also, I was not exhaling properly and my oxygen levels were far too low during each event. I needed not just a CPAP, but a BiPAP.

It took until December 4th for me to get my machine. There will be more on that, too, but I’ll say right now that I never once regret having to use this machine. It may not be very sexy, and it may be a pain in rear to take care of, but I love it. My events per hour average 0.72/hour. Right… 66 down to 0.72. That’s a win.

I am now almost a year past surgery and six months of CPAP and am still having very frustrating cognitive issues. I don’t like to talk to people because I’m so afraid of sounding stupid.

I did some research today that I’ll share tomorrow. I’m not learning volumes yet, but I do know that whatever is going on is being driven by PTSD.