How to Tolerate Exercise with MCAS

Here are the basics of how to tolerate exercise with MCAS. I love to cross-country ski, and with the recent snowfall we received in Minnesota this week, I was excited to get out on the tracks! Part of exercising sustainably for me is knowing how much exertion I can tolerate with my MCAS. Exercise intolerance is a hallmark of Mast Cell Activation Syndrome (MCAS).

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Why wouldn’t you tolerate exercise with MCAS?

Exercise intolerance is defined as “an inability or impaired ability to perform physical activity at an expected level or duration for your age and/or current fitness level.” Dr. Becky Campbell

“Exercise has been found in a number of studies to induce mast cell degranulation and release of de novo (newly made) mediators.” MastAttack

Studies have also shown ” … an increase in serum levels of mast cell-related mediators with exercise.” NIH

Other research has shown that ” … aerobic exercise, like running, cycling, or kickboxing can significantly raise histamine levels in the body.” Healing Histamine

So what this means is that for people with Mast Cell disorders and/or histamine intolerance exercise can make things worse for your condition. Symptoms of exercise intolerance can be the same as any triggering event for you. If you have exercise intolerance when you exercise you will have an increase in mast cell activity, which will cause your symptom progression to begin.

What is MCAS?

Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. MCAS is serious and disabling and people with MCAS experience often significant and debilitating symptoms daily, including anaphylaxis, which can be fatal.

MCAS is often found in combination with other chronic conditions such as Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).

Frequently healthcare providers do not know about MCAS, and the tests for MCAS are problematic because they are not uniformly reliable. MCAS can be difficult to manage. Treatments include blocking mast cell mediators with anti-histamines and mast cell stabilizers, as well as avoiding triggers.

Check out this post on how to manage MCAS.

The bucket theory

The bucket theory offers a helpful analogy for understanding symptom reactions with MCAS.

Think of your body as an empty bucket that you want to keep from overflowing. Different foods and activities fill your histamine bucket at different speeds but they combine to form the total level of histamine in your body (how full your bucket is). A fuller bucket means you have more histamine symptoms. When you manage triggers, reduce exposure to known triggers, and take medications and supplements to reduce histamine, you can manage the level of your bucket.

Know your typical symptom progression

Knowing your symptom progression in a symptom flare is the key to developing your own rescue plan. In this post, I discuss how to determine your own symptom progression. Once you know what typically happens in your symptom progression you can design a rescue plan to address those symptoms.

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But exercise is good for you!

Yes! Exercise can also help modulate your mast cell activation. JPS

The key is to know how much exercise you can tolerate and to stay within the safe level for your body.

So, how do you do that?

Evaluate your symptoms

First of all, you need to know your typical symptom progression. So, before you even put on your gym shoes or strap on your skis you should assess where you are on your symptom progression. If you are already experiencing one or more of your symptoms that can serve as your guide to whether you need to take any of the steps on your rescue plan before you exercise, and how much exercise to safely undertake.

Tailor your workout to your symptoms

Let’s say you are thinking of taking a walk outdoors. You pause to evaluate whether you are experiencing any of your mast cell or histamine intolerance symptoms, and you notice that one of your typical symptoms is happening, but otherwise you feel okay. So, you take your first rescue medication or supplement and plan a workout that will likely be successful, based on what you know of how your symptoms usually progress.

Scale back if necessary

If you begin to experience more symptoms that is the time to slow down or stop physical activity. Take another rescue medication if necessary, and monitor what is happening. If symptoms continue to ramp up you will want to take the next steps in your rescue plan. Note the triggers this time, whether it was heat, movement, exertion, sun, or whatever. And make notes for next time so that you can control your symptoms sooner.

Don’t sweat it!

Exercise is going to look different now relative to before contracting MCAS. It can be frustrating when you want to get out and enjoy nature, move your body, and experience the benefits of cardio. But staying within your bucket is the key to being able to exercise at all. You may find that with practice, over time your tolerance will build up, and you will be able to manage a longer or more intense workout. But if you can’t, count it as more information about your MCAS, and continue to make tweaks to your regimen.

What works for you?

I’d love to have your comments about tolerating exercise below!