I watched a few videos about ME/CFS this morning which spurred me to do some research into saline treatments that can put someone in remission.

Of course, that means IV drips every day for a long time. You have to consider the time involved, the effort of getting ready and going out, and what insurance will cover.

There are OTC powders but they are poisonous, from what I can tell.

What I’ve put together is that I need to drink over a gallon of clear fluids a day and some Gatorade to replenish the electrolytes I’m flushing out with the extreme water intake.

So, I’m going to give this a try. I’ve been getting one UTI per month and maybe drinking so much will help keep my kidneys and system flushed clean.

So far, no change, but I don’t think this is an instantaneous cure.

I am very much ready for this…. thing… to go away.

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.

I’m losing my hair again. This the second bout of this in the last year. My research tells me that this is related to both stress and ME/CFS. It should be temporary and the hair will regrow after about five months. This type of hair loss is called TELOGEN EFFLUVIUM.

I’m still in a crash that started after a party Thursday night. Moving is painful and crushing fatigue holds me down. My brain is a tangled snarl of messages that make little or no sense.

This crash has brought my worst pain from my lymph nodes. The three in my neck (two on the side, and one on the back) are swollen and painful. I have been applying heat. This is a common symptom of ME/CFS.

It’s Mother’s Day. And it sucks to feel like this.

(Forgive typos, etc. This is not a good day.)

I typed up everything below this paragraph, thought I’d hit Publish, and fell asleep. I’ve slept for about three hours and I feel no more rested than I was before. My muscles are burning, my head aches, and there are minor earthquakes here every few minutes. (That may be one of the biggest keys to my diagnosis, as it is continually blown off by all of my doctors. ) I’m paying for the day of getting ready and going to the party mentioned below. It’s lunchtime and almost time for my afternoon Adderall. Here’s hoping for some writing – or at least “active reading” (as defined in the book “How To Read A Book” this afternoon.

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Last month I finally got a diagnosis that ticks a lot of boxes with regard to symptoms. For a while my diagnosis was fibromyalgia, but I fail two major parts of that disorder:

Fibromyalgia entails “hot spots” of pain, and my pain is general with no one point being worse than another.

Fibromyalgia also makes it possible to recover quickly from exertion.

Therefore, my diagnosis has defaulted to being Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The National Institute for Health casts a broad net regarding symptoms. I will dig much deeper. As time goes on here.

I went to a retirement party last night and my brain and body are punishing me.

These are hard days because my aphasia is so severe and my body aches.

I’m thinking, fuzzily, back to when I had Epstein-Barr syndrome 17 or so years ago. A latent strain of that could have led to this. I know, however, that this is not at all that’s going on.

Please follow this blog if interested. There is a link that hovers over the bottom, right-hand corner of the page.

I’m going to go fruitlessly rest. Bah