Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Wednesday, April 8, 2015

Possible relapse - very frustrating

I keep a daily rating of my overall health, then I tabulate an average at the end of each month to track my progress.  March, 2015, was my best health month since I first became ill in the Summer of 2011. Even before I tabulated the average, I could tell March was going to be a blockbuster. I only had one or two days in the month when I didn't feel like I could accomplish about 90% of the things I needed to do (work, errands, child care) and maybe 80% of the things I wanted to do. Short of any cardiovascular exercise (which still induces a crash), I was, if not exactly "living large," living upper-medium.  

As March continued, I started wondering if I should consider myself "in remission."  I wasn't close to my pre-ME/CFS self, but I was wondering if I should nonetheless consider myself more-or-less in the category of "regular people."  I still regularly experienced symptoms like "air-hunger," swollen lymph nodes, and random inflammation, usually in the area of my kidneys and pelvic floor, and many others.  But over time, these symptoms had reduced in severity to the point where I felt I could live with them without too great of a reduction in quality of life. March was the pinnacle of this.

So naturally I went nuts during the month of March, despite my better judgement.  I started drinking coffee on a daily basis and running around doing errand after errand like I'd never heard of ME/CFS.  "What's this Myalgic Whatchamacallit you speak of?"  I let myself work later and later hours.  I even worked a weekend, despite reservations in the back of my mind.  It's easy to say now, "I should have known better not to push it so hard." But then again, as I improve, how will I know what my new limits are unless I test them?  Plus, who has the discipline not to fall back into old habits, i.e., being a regular person?  If you do, you're stronger-willed than me.  

On Friday, April 2, body-wide inflammation swept over me and I knew it was something significant.  It's only been 5 and a half days since then, so maybe it's too early to call it a relapse.  Sunday was a so-so day.  And even in my current state, I'm more functional than many patients.  It's nonetheless disappointing.  I keep holding out hope that this is just a "bug" (sick on sick), but it doesn't feel like it.  Unlike with a typical viral infection, the symptoms aren't localized to any particular area of my body.  They are everywhere: brain fog, swollen nodes, shortness of breath, kidneys inflamed, gums inflamed, cold hands and feet, weakness, pain in pelvic floor muscles.

Another possible explanation for this downturn is that I recently started experimenting with eliminating certain supplements and prescriptions from my daily routine.  So far I've cut out OraKidney, potassium, PS Complex, Valacyclovir, and B-complex With Metafolin.  I also cut Vitamin D-3 down from 10,000 IU per day to 5,000.  I cut back on Testosterone injections too because I thought it might be contributing to pain in my pelvic floor muscles.  Just to be safe, I'm going to start going back on those supplements until I get this figured out.  

It will be interesting to see how this one plays out...

In the meantime, I got a bunch of test results back from my new doctor.  I owe this blog an update on those results too...coming soon.  Short version: CD57 (a type of Natural Killer Cells) is pathetically low.


  1. March was great for you - as you said - too great. Pacing, pacing. Maybe too much experimenting in one month. I understand it felt good to feel "good." ME is insidious. Interested to find out the results of your new tests. Take care.

  2. love your blog patrick. I was diagnosed around 2 years ago and suffer since 2012. We have very similar symptoms.....heavy fatigue, PEM, air hunger and occasional kidney pain. Send me an email I visited KDM (kenny de meirleir) last month and results due soon. I'll update you with any progress.greg

  3. I am always so impressed with your data collection - it gives you something concrete to look at.
    Sorry to hear about the relapse, but it sounds like you know it's just a push/crash reaction to all the wonderful stuff you did last month.
    I did this in a microcosm last night. I capped off a lovely day of chatting to my Mum by spending 10 minutes waltzing with Guy in our living room. And I am stuck in bed all this afternoon as a consequence.
    I hope you bounce back quickly!