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, August 28, 2013

So a man walks into a gym...

Yesterday I stepped foot in a gymnasium for the first time since before I became ill.

For the first year or so that I had ME/CFS, I didn't do any exercise.  I didn't feel up to it all, and if I tried, I crashed.  My resting heart rate at the time was already in the 100s, so it felt like any exercise would make my heart explode. And I won't even get into the problems with POTS and exercise.

Then with a little improvement, I started doing some Tai Chi, which is pretty much the most mellow form of exercise you can possibly do.  I hesitate to even call it exercise.

After a while, it became clear that I could handle Tai Chi with no problem, and I began to feel the urge for that old after-exercise feeling.  You know, that feeling where you're relaxed and that your blood and lymphatic drainage system is flowing more freely.  So as my treatments progressed and I started to feel better, I moved on to yoga.  First I started with my wife's low-key prenatal yoga videos.  Then I moved on to regular yoga videos and to doing sequences of "asanas" that I remembered from my days of taking yoga classes.

During this period, I also started doing far infrared sauna sessions every 2 or 3 days, which for some reason, always left me with a feeling like I had exercised.  Truely, the feeling is almost identical, and I even record my sauna sessions in the same column as my so-called "workouts" on my health charts.  I believe that the same principles are at play: blood flow and lymphatic drainage.

In the last few months, I have graduated to lifting weights at home, trying to gain back some of the over 35 pounds in muscle mass that I lost when I got ME/CFS (OK, some of it was fat!).  I don't want all of it back, but half would be nice.  My goal is to get up to about 195-200 lbs (88-90kgs), which is what the Body Mass Index says is ideal for my height and build.  I am at about 194 lbs now, so I'm close.

I lift smaller weights than I lifted before ME/CFS, as the goal here is not to build showy "beach muscles" but rather to improve my health and well being.  Excess build up of lactic acid would only be counterproductive to my goals.

Yesterday, I took the next step and actually went back into a gym.  Although I have a nice collection of different sized dumbells at home, my home workout options are limited when it comes to leg exercises, and I definitely don't want to be one of those people who has solid upper body mass, balanced on top of toothpick legs.  

Credit: WeKnowMemes

So I cautiously banged out (oxymoron?) a few sets of leg presses, calf presses, and leg raises, and then I rode a reclining stationary bike for ten minutes. (The reclining bike is better for keeping your heart rate in check. Most gyms have at least one).  The whole time I wore my heart rate monitor and made sure to keep my heart rate under my estimated AT of about 100-115.  I found that I could more or less make it to hover just below my AT and stay there if I carefully monitored it and adjusted my pace accordingly.

Let me be clear about one thing, I'm not suggesting that these exercises are responsible for my improvements.  The improvements came first, likely from treatments, and the increased levels of exercise followed.

But the whole point of this post is this: Damn it felt good to be back in a gym.  That feeling that I've had for the last two years, that I'm an alien in the world of the physically active, melted away for an hour. Simply being around the hustle and bustle of a gym, the people running around in their slick workout outfits, carrying towels, feeling good, wiping down equipment--it felt right.  Everyone's iPoded up, struttin' their stuff, in their own worlds.  (It's quite comical, actually.)  I even welcomed that gym-y smell of stale sweat.

So far today I feel OK, but I wouldn't expect a PEM crash until tomorrow if it comes.  If this experiment works out, I plan to make gym trips a once-a-week thing.  I'm always wary of pushing too hard and relapsing, but at the same time, I need to find out exactly what my limits are as they change over time.  As the respected Dr. Klimas has said, doing as much "exercise" as we can do without crashing (and that's the key), however much or how little that may be, could be a key factor in reversing the dysfunctional gene expression that we experience.  This is a controversial opinion, as many patients report being made worse by even the slightest of exercises, but in my case, I think I'll continue on my path and proceed cautiously.


  1. It's Friday morning Paris time. I hope you are feeling fine. I'm happy for you that you got into the gym. I swam a lot in August. Loved the smell of chlorine....

    1. That's great news Beatrice, I'm glad you have been able to swim. I agree that the smell of chlorine is great - it reminds me of summers as a kid. (Although some PWME's say it absorbs into the skin and is harmful for us. So I don't know what to believe!)

      I still use my spa one or twice a week, but I keep the minimum amount of chlorine in it just in case, and I try to keep the water clear by other systems like an ozonator and mineral sticks.

      But that's great that you have a way to get the blood/lymphatic drainage flowing. I think we are the lucky ones to be able to do that.

  2. Patrick-Happy Friday. I just wanted to keep you in the loop on my saline IV treatments. I had my last scheduled treatment yesterday, making this the 4th I have had. I have to say that the past 8 days are the best stretch of time I have had in many months. I would say I have moved from 75% pre illness levels to 85% with this. I can tell because I wake up with a clearer head, and can exercise a bit more than I am used to. So.....I will see about a plan once I determine how long the effects last. A bit of a hassle having to go the doctors office for the IV (which then takes an hour) with working, but if it makes this kind of a difference I will do it. Have you ever brought this up to any of your doctors?

    1. Bret, thanks for the update. That sounds really encouraging. Does insurance cover these IV infusions or do you have to go out of pocket? If insurance covers it, I would definitely want to try these infusions.

    2. My current doc is out of my network insurance-wise. My plan covers basically 1/3 of the cost of out-of-network providers, so basically $40 a pop for the saline IV. I think I mentioned that I am considering switching to someone else in my network, therefore being covered. But, I will gladly pay for this if the results are what I have seen so far. There is always something I can cut out of the family budget my cravings for DQ Blizzards every so often!