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

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

Thursday, May 28, 2015

What I learned from a vacation

In that wake of a recent vacation I took to Croatia, I have to rethink much of what I thought I knew about my illness.  Since the beginning of April, I have been in a crash that was severe enough that I wondered if it should actually be called a relapse.

The day of the vacation arrived and I was feeling about as ill as I've felt at any point the last two years or so.  I was really beginning to regret that I had ever thought I could manage this vacation.  I was lying on a bench at Los Angeles airport with this weird brain-foggy headache that had become my worst symptom in the prior two weeks. It comes with painful knots in my shoulders and sometimes swollen glands in my neck.  It's a new type of headache that I hadn't previously experienced.  I wondered how I would manage an 11 hour flight, a 5 hour layover in Germany, and another two hour flight.  Then a cab ride.  Then a walk up three flights of stairs to a rented apartment in Dubrovnik.

I figured if I could just manage to get to that apartment, then I could repose for an entire week.  I rationalized that, even if I was never able to leave the apartment, at least I would have a view of the Adriatic and fresh salty breezes.  At least I'd have a new stamp on my passport.

My wife had some migraine medicine and she suggested I try it.  I had nothing to lose so I popped the pill.  At around that time, I noticed that the airport had a day-spa right there in the terminal.  There was plenty of time before the flight was supposed to board, so I decided to buy a half-hour neck and shoulder massage by a professional masseuse.

I still don't know if it was the massage or the pill, but by the end of that massage session, I was feeling 85 to 90% better.  I couldn't believe it.  My symptoms continued to improve on the flight to Frankfurt.  By the time I landed in Frankfurt, I actually felt well enough to leave the airport during the layover and get coffee and lunch in the city's center.

Once in Croatia, I was like a person just out of a coma.  Sure, on a few days, I felt the brain-fog/headache, but it was barely noticeable--a background inconvenience.  As I do sometimes on special occasions, I forgot about my diet for the week and ate and drank whatever I wanted. Croissants.  French fries. Baguettes.  Cappuccinos. Gelato.  Beer!  Notwithstanding the time difference and jet lag, I felt more or less like a normal person for that week.  Perhaps strangest of all, the white film that's usually on the back half of my tongue (indicative of candida) was mostly gone all week, despite my broken diet.

So I figured this vacation happened to correspond with a turning point in my crash.  Maybe it was a coincidence, I thought.

I flew back on Sunday, still feeling good.  Had Monday off of work.  Still felt great.  Tuesday morning I wake for work and that weird headache is back just a little.  It's barely noticeable when I first wake.  By the time I get in the car to drive to work, it's raging again.  I think, "what the hell is going on here?"

The symptoms have persisted on and off (mostly on) since Monday.

Most ME/CFS patients will read this and probably think: "There you go. You've proven that your ME/CFS has an environmental trigger.  You're obviously reacting to something in your home, car, or work."

I suppose that may be true, but it doesn't explain why so many other past experiments with changing my environment haven't made any difference, nor why I felt so well (relatively) in my home/work environments over the past year, up until April.

Another possibility is that the symptoms are caused by a supplement.  I did leave a few of my supplements behind to save space in packing.  I'll experiment more with this, but I'm doubtful.

Still another possibility (and believe me I hate to acknowledge that this is even possible) is that stress associated with work is somehow triggering my symptoms.  This still wouldn't explain why my immune system is so screwed up in blood tests, but I suppose it's possible stress could exacerbate immune dysfunction.   My reaction to this possibility is: it doesn't make sense because I'm fairly laid back and don't think of myself as a stressed-out person.  But I suppose stress could be affecting me on a level I'm not aware of.

Bottom line: this vacation has given me a lot to  think about and evaluate with my doctor.  I never expected to suddenly feel great on the vacation and I never expected to suddenly regress when I returned.  This certainly seems to be a strong clue, but I don't yet know what it means....


  1. When I have the flu I feel worse knowing I have a full work day the next day. The minute I cancel work, I instantly feel better. But I'm still sick with a 100+ degree temperature, sore throat, sinuses, etc.

    Stress will generally make an illness feel worse. Doesn't mean you aren't really sick.

  2. Wow that's fantastic. Certainly sounds like it could have been any one of those factors, or as I find often "Answer D. All of the Above" might also be the case.

    Regardless, the experience is a great argument for another vacation soon, purely for research sake of course!

  3. Oh I'd bet my life savings it's environment.

  4. Your experiences are wholly typical of people who are just moderately sick with this sort of illness and who make their way to a good location. I have heard good things about Croatia from others as well.

    You may want to take a look at the book "A Beginner's Guide to Mold Avoidance" (available for free). If you can do that well in Croatia, likely you can find a way to do well in the U.S. as well.

    Good luck.

  5. Your home environment may have hidden mold.

  6. Do you think the change in location could´ve been the key factor ?

  7. If you haven´t heard of it, there´s a good group on Facebook called "Locations Effect." I hope you´ll check it out. Many people find their ME symptoms go into remission while they´re in certain locations.
    - Pol Beith.

  8. Good to hear you enjoyed your holiday!

  9. I agree Patrick that this probably isn't an example of the so-called "Location Effect", but rather the break you've needed for longer than you probably realized. Also, if it was a classic Location Effect improvement, you wouldn't have felt better on the airplane on the way to your destination.

    It could've been the migraine med, but I have a feeling that the massage helped improve blocked or stagnant lymph in your head and neck (and maybe jaw) area. Just a guess…

    Lastly, stress definitely impacts immune dysfunction. In general it keeps it stuck in Th2 mode, but a google scholar search turns up a lot of research that you might find interesting:

  10. I can't believe you went to Croatia! You're so brave! I dream about being able to go home to Ireland. Sorry things regressed again, though. It's very interesting.