MCAS & Exercise: The Struggle Is (still) Very Real

Many of us with mast cell disease find that exercising, or even just strenuous activity (see my upcoming post all about MCAD, hormones and sex (!) ), can lead us into a degranulation situation that we really don’t want to be in.

For some of us, exercising causes our asthma to flare. Some of us get hives, especially where we sweat. Some of us feel dizzy and want to faint and some of us even have to stop before we’re in full anaphylaxis!

Yeah, it’s cray-zee.

I used to love to exercise, back when my disease was simmering at a much lower level. I hiked, biked, swam, practiced tae kwondo and yoga, and a lot of other activities which kept me fit and healthy for most of my life. We moved here next to Yellowstone because we are both very active outdoors people, or were.

It wasn’t until I was about 40 that things started to take a turn and within a short time I was limping and using a cane (!) because my hip felt like it needed a replacement. The pain radiated up into my ribs and down to my knee and was a constant companion. Every. Single. Day.

I knew it couldn’t find anything to help with it because all of the anti-inflammatories gave me hives (and worse) if I took them every day. Slowly, I lost my fitness and I also lost a good majority of my energy. My disease rapidly progressed after that.

I tried to get back into exercising a few times this last year since my dx but found it is very difficult to not get triggered. The experts recommend doing 30 minutes of anaerobic exercise a day because it’s less likely to trigger us and I’ve been able to finally (Finally!) get back into a routine after a lot of trial and error.

I’ve had to completely rethink my exercise routines and cut out about 85% of what I used to enjoy doing in order to stay fit. That means I definitely can’t walk for very long or run anymore. No hiking or biking, either. No martial arts, no swimming and no cardio.

So what’s left, you ask?

Well, I’m now doing “micro workouts” throughout the day, on days when I feel up to them, that is. I will lay on the floor and read or watch TV while doing leg lifts slowly or even pushups, again slowly, so that my heart rate stays steady and I’m not having to take in extra oxygen.

I also got back into doing Yoga With Adriene (yay!) recently but I stick to her more gentle sessions, like this one for the morning:

 

Or this one for any time:

Of course, if your mast cells can tolerate more cardio than mine can then you can always start her 30 Days of Yoga challenge:

I just love Adriene and if you love yoga, you probably will, too!

We’ll be walking the pups at the lake soon, so there’s that, but I can’t walk for too long or I will start to get itchy and sneezy. I get hives, too, sometimes. I have to be as hyper vigilant with my exercise routine as I am with my foods, medicines and trigger avoidance.

It’s worth it though if it helps me in the long run, which it undoubtedly will, and it’s just another aspect of this disease that makes me have to completely rearrange my life to suit my cranky mast cells.

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