It sounds so simple when people tell us to “just” try exercise. But I want to dig into some of the complexity involved in exercise with fibromyalgia, ME/CFS and hypermobility.
I know our bodies are made to move. And I know that the only continually proven “treatment” for fibromyalgia is exercise.
But the devil is in the detail.
How much, what type and how often.
My Exercise History in a Nutshell
I have exercised my whole life. I’ve loved movement in all forms. As a young teenager I played netball (center, wing attack and wing defense). When I was at university I was a receptionist for a gym.
Even after getting sick I continued to move. Slowing down with what my body allowed. I didn’t do a good job of listening to my body for several years. And I am still trying to get this right.
I did Pilates for many years. Before switching to yoga because that was easier in my body (after my first son). I’ve always loved walking. I love being outside with the fresh air and birdsong. Walking is more for my mental health than my physical health. Please note that by “walking” I mean starting where I am physically able at the time and mindfully increasing as I could. So that meant walking to the end of the street and back. Eventually around a 22 minute block, which I still take today.
In 2019 I trained to be a yoga teacher so that I could share the complexity of movement with chronic pain and chronic fatigue. It’s not as simple as it might appear. There’s an interplay of the fatigue and the pain. Adding in the hypermobility dimension and all bets are off.
After my major operation in June 2023, I was decimated. Well, I was decimated after the birth of my fourth child and it got worse as the periods got worse and less predictable every month.
After six months recovery, I decided it was time to build my strength. I started with five minutes of stretching and strengthening. Five (yes, 5) micro squats (I kept my feet hip width), five leg lifts, cat and cow, superman and pelvic floors.
Slowly increasing to 10 minutes and adding a couple of moves over months.
Until one day I put my sacroiliac (SI) joint really badly out doing my regular routine. I could barely walk, and I couldn’t sit. That required a same day chiropractor appointment and a follow up two days later.
The Muldowney Protocol for Hypermobility
So I put a call for help in a Facebook group I’m in. Someone told me about the Muldowney Protocol (PDF from The Ehler’s Danlos Society). A protocol for hypermobile Ehler’s Danlos Syndrome (hEDS). The protocol begins with stabilising the SI joints. There are many levels starting at a level 0 if needed.
Level one is five basic but very gentle and controlled exercises, like bridge, supine marching, supine clams and ball squeezes. You start with one minute for each exercise (repeating them slowly for the time). And each day, as you are able, you add 10 seconds. Until you are able to do three minutes for each. Then you move to the next level.
The person who told me about this that there are some people who simply do level one or two every day ongoing for maintenance.
I had to do this on my bed because I can’t lie flat on the floor. So I dutifully set my phone timer and did each exercise for 1.5 minutes on day one. It felt good, if a little tiring at the time. And at the end of the day my muscles were a bit sore but I felt solid, stable.
On the second day, I added 10 seconds. At the end I felt a little sore. But I think I managed it.
I look forward to continuing. And updating about it.
But the thing that gets me is how simple these movements are. I want to be lifting weights and doing squats. But what my body needed was tiny bridges, lying down marching and legs only supermans.
It’s so complex.
I share this to highlight the complexity. And that it’s never “just” exercise.
I hope you know that you’re not the only one if you’re here with me.
