July 30, 2022
Welcome to Dr. Brainerd’s B.R.E.A.T.H.S. Saturday’s Health Edition. This space is for me to discuss my journey with my full body genetic disability, Ehlers Danlos Syndrome (EDS) type 3-hypermobility (HEDS). The first week in July, I discussed my diagnosis with the chronic pain, several other symptoms, and mental health disorders that are associated with hEDS. The second week, I reviewed my strategies on how I manage my health with a forgiveness cleanse. I missed posting last week due to a conference, so this week I am posting about the exercises that are acceptable for people with EDS/hEDS.
Exercising with EDS/hEDS
Before I knew about my diagnosis, I worked with several personal trainers who modified the activities for me. When I first learned about my hEDS diagnosis, my rheumatologist informed me that I had to refrain from most exercising as it would cause more stress on my weakened muscles and joints. I could not do weight lifting or circuit training, yoga or Pilates due to easy hyperextension, no running or bike riding, and I could not do any active sports. I was crushed since I have been athletic most of my life, and I had no idea what was left for me to do to keep my body in shape.
Acceptable Exercises for EDS/hEDS
My primary care physician referred me to physical therapy where they would work with me at strengthening my core, arms, and legs, and help reduce my range of motion. After some research, I found I could do some low intensity water sports or resistance band exercises, and that was about it. There was an outdoor pool in Long Beach where I signed up for water aerobics a couple times a week. Since I moved out of state and have been on the road, I purchased some resistance bands, been watching YouTube videos on occasion, but not really finding something I can stay consistent with while traveling.
Continuing to Stay Healthy
While I am not too concerned with my weight which hovers around 180lbs at 5’10”, I would like to lose some pounds (160 is my goal weight) to reduce the amount of stress the excess weight puts on my body. I have contacted a few workout places and have not yet found a program that would work for me. This makes me think there is an open market I can explore to be able to help myself and others with similar disabilities by creating a specialized workout plan that can be done at home. If you have any ideas or suggestions on an exercise program or facility that has a personal trainer who can work one-on-one and understands the limitations of EDS/hHEDS, please comment below.
Sending lots of love and gratitude,
Dr. Jaime Brainerd, E.d.D.