Apr 30 Q & A: My Current Exercise Regimen

I recently received an email from a Mom whose daughter has just been diagnosed with EDS and POTS.  She had questions about my exercise routine with POTS and EDS.  It made me think about how I have really neglected this blog the last few months.  I am honestly having trouble finding the time and the energy to keep everything updated, but I am going to try and do better.  I feel it’s important; especially for awareness and documentation sake.  When I think back to why I started this blog in the first place, one of the reasons was to document my journey for learning to live with EDS and POTS.  When I was really sick, I remember looking all over the Internet for blogs that did the same. I found such comfort in reading about other people’s stories that were so similar to mine. 

Below is an excerpt of the email, followed by my response:  

“My 16 year old daughter has been diagnosed with both Hypermobility Ehlers-Danlos and POTS.  Since the HEDS diagnosis I have been following your Facebook page and am inspired by your enthusiasm for raising awareness and your positive attitude. 

I was wondering if you have a post somewhere that details your weekly exercise routine.  If so, can you please direct us to that particular post?  Also, may I ask who developed your exercise regimen?”

My response:

When I was first diagnosed, my exercise program looked a lot different than it does now.  I was wheelchair bound when I got diagnosed and pretty much had to start over from scratch after being a gymnast for so long.  Increasing my exercise was a very slow, and often frustrating process.  However, I am happy to say that it has stabilized some in the last few months.  I am hoping to work on increasing my level of exercise when the school year is over, and I have the summer off.  My program has been put together through a collaboration of a lot of people ~ My physical therapist, me, and different doctors (Sports Med, POTS, & EDS).

When I started with my POTS doctor, he told me life would change significantly for me if I could work up to doing 4 days a week of cardio for 30 minutes at a time.  I remember looking at him like he was crazy since standing up was such a challenge, but I am happy to say that I have (after 3 years) and he was right.  Muscles; especially in my legs and core act as a “back up heart” to help pump my blood to where it needs to go. 

The following is my current basic exercise routine, which I have found works pretty well for me to manage my symptoms to be able to work and function. 

Disclaimer: It needs to be said that every person with POTS and EDS is different so an exercise program will look different for each individual.

 Physical Therapy (1 Day a week):

• 35 minutes on the Elliptical
• 5 Minutes of arms on the arm bike
• Pilates routine on the Pilates Reformer with my therapist (about 25 minutes) a lot of core and legs!
• Scapula fire exercises
• Glute Fire exercises
• Light weights-Biceps/Triceps
• As many toe rises as I can handle! This one is a biggie to manage my POTS!
• Proprioception work on the balance ball. (Balance on each leg a minute and a half)
• 25 squats on the balance ball
• Light stretches to end.  Especially my quads, hips, and IT bands. 
• My therapist also usually does an OA release on my neck before I leave.

Home Rehab: (2-3 Days a Week):

• 35 minutes on the Treadmill-Walking, Currently 3.0-4.0 incline, 4.0 speed
• Floor Pilates Exercises-a lot of core
• Scapula fire exercises
• Glute Fire exercises
• Supermans
• Light weights-Biceps/Triceps
• As many toe rises as I can handle! This one is a biggie to manage my POTS!
• Proprioception work on my half foam roller. (Balance on each leg a minute and a half)
• 25 squats and 25 lunges
• Light stretches to end.  I use my full foam roller for this.  Especially for my quads, hips, and IT bands. 
• I will also do some dancing to whatever music is playing!  I need music to get through! Plus dancing is great exercise that makes me feel ALIVE!