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

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

Monday, August 24, 2015

A New Phase of My Illness

Looking back at my daily healthy chart (averaged by month), I can see that I clearly hit a peak in March of this year.  That was my highest rated month since getting ME/CFS in June, 2011.  From June 2011 to March, 2015, I was steadily improving.  Naturally, there were setbacks, but the overall trend was improvement.  The improvement trend seems to have reversed itself after March.  It's only been about five months since then (and July was actually a pretty good month), so it may be too early to call this a reversal.  But I've also noticed that my symptoms have changed during that time.

The good news is that my symptoms have become more consistent and predictable.  The bad news is that they seem to be present more often than, for example, this time last year.  Since March, my main symptoms have been sinus issues, shortness of breath, and swollen lymph nodes in the neck.

For years, I've seen and read of other ME/CFS patients on message boards who dealt with sinus issues, and I thought, "how strange that I don't have any sinus issues."  Well, now I do.  Every day. Each day, for at a minimum of 2 to 3 hours, and sometimes all day, I get the sniffles.  Never a fully clogged nose - just the sniffles.  It's a consistent post-nasal drip.  It often dissipates as quickly as it arrives, for no apparent reason.  Netti pot and other nasal sprays have been ineffective.

The sniffles always come with shortness of breath (SOB).  The two symptoms are somehow intertwined.  With the shortness of breath, even though I am breathing normally, at a normal pace, it feels as if I'm not getting enough air.  If I stand in one place for more than a couple of minutes, the shortness of breath becomes worse.  It feels as if my circulatory system is struggling to get oxygen to all parts of my body.  Lying down flat, or simply moving around and improving circulation seems to help the condition, but not fully alleviate it.  This may be why, every time I have a blood test, my red blood cell count is sky high.  I have the red blood cell count of someone who lives at high altitude.  For a while, I dismiss this as a side effect of the Testosterone injections I was taking, but the condition continued even after I stopped taking Testosterone.  

SOB is not a new symptom for me at all.  It was one of my original "big three" symptoms.  But what is new is that (a) it now always comes with the sniffles, and (b) I get it every day.  For long periods of time, sometimes months at a time, SOB would be gone from my symptoms list.  Now it is an every day experience.

And the final symptoms is swollen lymph nodes.  This is another one I've had periodically in the past, but very rarely, and never for more than a couple weeks at a time.  Now I've had it every single day (to at least some degree) for the past two months.  So it feels like I've entered a new stage of the disease.  My doctor can clearly feel the swelling, and sometimes it's so prominent that it becomes uncomfortable to turn my neck.

But the good news is that the consistency of the first two symptoms (sinus and SOB) give me something to focus on.  For so long, the symptoms would change so frequently--from day to day, week to week, and month to month--that there was no point in me searching for answers based on symptoms.  I instead had to take a "macro view," simply searching for treatments to ME/CFS in general.  Now I wonder if I can be categorized in a subset of ME/CFS--if I can use the new consistency in my symptoms to focus on what, specifically, might be at the root of my problems. I still hold out hope sometimes that ME/CFS might be a misdiagnosis, and that the correct diagnosis might be something treatable.


  1. Have you had your living space tested for mold? Apologies if you already worked through that but it would be the next thing I would suggest you test if you have not done so, especially given the sinus and breathing issues.

  2. Very frustrating. I have had CFS with varying severity since 1973. The worse was 1985-88. Lost 40 pounds. I have a hand in formulating a lecture by the well known CFS doctor a Dr. David Bell this December 6 at the Tustin Library. I will post updates on my Facebook page, Chronic Fatigue Syndrome of Orange County California.

    You all hang in there.

  3. Patrick there will be a lecture by the famous chronic fatigue syndrome doctor a Dr. David Bell this December 6, 2:30, at the Tustin Library. You can see the details on the South County CFS Meetup page.