🦓 Exercise Awareness: hEDS/HSD/POTS/MCAS

“It’s me. Hi! I’m the problem; it’s me.”

Are you tired of being the ‘problem’ in a group exercise class? Or maybe you’ve even hired a personal trainer, and they don’t know what to do with all of your ‘issues.’ I speak from experience because I’ve been made to feel bad about myself for not keeping up, for having movement patterns that look different, or for whatever an ignorant mind in the fitness industry might say. Even well into my 30s, I was “making excuses, excuses,” according to my manager at LifeTime, who, during a mandatory team meeting/workout, actively dismissed my stage 3 osteoarthritis. 🙄 So ignorant. Technically, I was ignorant, too, since I was not yet aware of the extent of my Zebra-ness. Which I imagine would have been excruciating to explain to him in layman’s terms.

I’m going to tell you right now that there isn’t much (any) literature on hEDS/HSD/POTS/MCAS in the fitness industry. If you have been circling your health insurance with any of the Zebra acronyms listed above, you know that the literature hasn’t landed with physicians yet. But if you’re lucky, you’ll find a doctor to diagnose you. However, a physician with minimal exercise science and nutrition education provides the recommended exercise/lifestyle prescription. Typically, you’re told to do what you can, with examples of exercise on mind-numbing seated hamster wheels sprinkled in with broad-term brands of exercise (e.g., Pilates, yoga). These recommendations contradict any weight loss that might have been nudged in with your exercise prescription. I have opinions on why these general concepts of light exercise prescriptions are a disservice to the Zebra community.

5 Ways Common Group Fitness Fails Zebras:

1. Inappropriate exercise selection and intensity

2. Poor exercise execution = ineffective training because of lack of motor control & proprioception

3. Stress out the “other” joints that aren’t the main focal point of an exercise

4. Fainting/dizzy spells

5. The overwhelming feeling of defeat when you are left to make your own modifications/drop out of every other exercise

So why do Zebras continue to be instructed to “do what they can” and make their own modifications in normal-bodied classes? Isn’t having Zebra stripes hard enough? You shouldn’t have to do your own program design, too. You deserve better.

Here are just a few needs that must be addressed when exercising with Zebra clusters:

• cervical spine stability

• thoracic spine mobility and strength

• flexibility — despite having some hyper-mobile joints, other parts get stiff.

• body awareness — the internal sensation of body position is low with all the possibilities that hyper-mobility provides

• orthostatic hypotension/intolerance; postural level changes & PHA training cause extreme blood pressure drops

• fear — constant fear of doing too much, either from experience or from lack of research/educated professionals

None of those needs are a theme in an everyday group fitness or yoga class. That is why I created my own. And I genuinely care.

Joint Primer: Fridays 1-2 PM PST via Zoom

If you are looking for a judgment-free, solution-oriented conditioning class that is mindful of training for these special conditions, please inquire about class details.