Ehlers Danlos Syndrome, POTS, and Mast Cell Activation Syndrome are a trifecta of medical conditions that I had never heard of, or forgot about if I did hear about them during any stints in the physical therapy settings during and after the internships for my Exercise Physiology degrees…
But a few days ago they were brought to my attention in a surprising way…
I was helping with some of the support functins for orders placed for my various programs and I saw one that was an order from Amber W. F. for 3 of my DVD sets ( ULBHT-Makeover, Co-Ed Total-Body Fusion and Optimum Flexibility )
Whenever I see an order for several of my programs at the same time, I like to check back and see if it’s because the person bought one program, loved it and then decided to come back for my other programs.
I did a quick check and I noticed Amber had purchased the DVD/book set version of Naked Beauty/The SYMULAST Method a few months before and then came back for the others.
I saw her phone number in the order history and decided to reach out, thank her and find out what made her come back and get the other programs.
We talked for a bit and because of what she shared, I knew it was a rare and unique story that needed to be shared…
So I asked her if she could summarize what she just shared with me verbally and put it into an email that I could post on the blog for others to see.
Amber said “yes” and then sent me this email not long after our call:
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Hi Joey,
Thank you so much for the personal touch of reaching out and calling to get feedback on your program. It was a very nice surprise.
I am 38 and have been struggling with Ehlers Danlos Syndrome, POTS, and Mast Cell Activation Syndrome for several years now.
Anyone familiar with these conditions knows how precarious exercising can be and what a struggle it is to find an effective workout program that doesn’t leave you feeling worse off.
I grew up very active and enjoyed a fast metabolism right up until the age of 30 and then I decided to research various programs after I completely changed my eating habits.
Initially I was a huge fan of all things Beach Body and I’ve amassed quite a collection of their videos and products. (Joey’s Note: Beach Body produces programs such as P90X, Insanity, Hard Corps, Etc…)
The problem was, over time, as I got older and my condition progressed, the workouts were no longer manageable and actually caused pain rather than relieving it.
I stumbled upon your program by accident while researching “effective ways to workout with a chronic condition”.
I didn’t realize the horror I had been putting my body through until I did your program and felt so much better even after just the first workout.
And I even managed to get my very stubborn father to do the workouts as well.
Thank you so much for including those of us who would otherwise be excluded from exercising due to our health conditions.
Sincerely,
Amber W. F.
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The experience of speaking with Amber and reading her email made me realize yet again, the far-reaching importance of proper exercise and fitness training in a way that doesn’t wear the body down but rather, enhances it, nurtures it, supports it and fortifies it for the demands of life and the ability to live every day as best we can, even when having to manage chronic conditions as part of our lifestyle…
The fact that her ‘stubborn’ father is able to also “train” with her, is a huge bonus that put an extra smile on my face.
Listen – let’s be truthful here…
I didn’t set out to create workouts that are specifically for people with Ehlers Danlos Syndrome, POTS, and Mast Cell Activation Syndrome.
But it pays to make note that Amber’s discovery of my materials as a great match for her needs highlights the fact that in a fitness marketplace flooded with hyped-up fads, mass-market trends and common-crowd mentality – there is a strong need for “alternative” methods and uncommon, non-traditional approaches to help the vast multitude of people who DO NOT fit into the even larger crowds of the ubiquitous mass markets, popular trends or current fads…
Of course, after my exchange with Amber, I began to look further into Ehlers Danlos Syndrome, POTS, and Mast Cell Activation Syndrome and hypermobility conditions to learn more.
I came across some helpful materials, some of which I’ll be looking at over the next week or two. But for now, if you’re interested – I’ll share a few links here:
1 – The Dos and Don’ts of Exercising with Ehlers-Danlos Syndrome
Here’s a good snippet from that article;
Exercise regularly: If you have EDS, your connective tissue in your tendons and ligaments may be compromised. Luckily, strong muscles can help pick up some of the slack, stabilize and secure your joints in place, and cut down your chronic pain. Everyone knows that exercise is good for you, but if you have EDS, think of it as daily medicine.
I wasn’t crazy about the mention of training with free-weights in that one – because I believe, generally speaking, bodyweight exercise is a superior form of resistance training (followed/augmented by resistance bands in conjunction with), especially in this context, when all factors are considered.
2 – Intelligent Exercise – How You Can Take Control With EDS
3 – A Novel Exercise Protocol for Individuals with Ehlers Danlos Syndrome: A Case Report
4 – What It’s Like to Exercise With POTS and Ehlers-Danlos Syndrome
That’s it for the links…
Before I emailed this post out to you, I emailed it to Amber to have a look and see if there is anything I could/should add – and here is her reply:
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Hi Joey,
I think the information for the email newsletter is arranged very well and I hope it will help someone.
I also clicked on the links you attached. They are also very informative.
This information helped me to further appreciate just how different each person with EDS is and how varied the approaches need to be.
I was on a swim team when I was younger and naturally assumed being in the water would be beneficial for EDS. I joined a gym and bought everything I needed only to find out the weight of the water even in the shallow end felt like it was compressing my joints.
After trying to get used to it for several months, I realized it may help some people, but it just wasn’t for me.
It is very much trial and error for us all. Thank you again for taking an interest in these conditions.
Sincerely,
Amber
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I’m actually looking forward to Amber’s personal, candid feedback when she’s had enough time to incorporate the additional exercise DVDs she just purchased, and she feels the time is right.
If you know anyone who might benefit from today’s post, please do share it with them any way you can.
I have a feeling I’ll be doing at least another follow-up post on this, maybe even a few more, maybe even a podcast interview – especially after Amber has a chance to incorporate the new DVDs into her fitness training routine.
As I did more searching and reading – I found myself in the realm of “hypermobility and exercise” and “training hypermobile clients”.
More to come for sure…
Any questions, comments or thoughts? Just post below – you know I love hearing from you.
Your trainer for LIFE
~ Joey Atlas