Quite a few people have been reaching out to me lately over Instagram to ask me how I exercise with Dysautonomia. Honestly there isn’t just a simple answer to this question, so I felt it deserved a lengthier response than just a caption on a photo. Please understand that this is not medical advice, but simply what I did and saw improvement of symptoms with. But feel free to use this to start a discussion with your doctor and come up with a course of action under their advisement.
When I was first diagnosed with Dysautonomia, approaching 5 years ago, my electrophysiologist told me to research. So, I did. I am a nurse by profession with a love of learning- naturally I jumped on the opportunity to dive head first into medical journals on the subject. At the time, I was a working as a nurse at a cardiology practice, but I could not recall ever meeting any patients with what I had been diagnosed with or even anyone ever. The patients that I did know with orthostatic intolerance were certainly much older than I was and generally in poor health, which was pretty different from myself. The majority of articles, videos, and books that I read on Dysautonomia placed emphasis on maintaining physical fitness to fight against the deconditioning that goes hand in hand with the disorder. The human body can become deconditioned rapidly, even if a person has a clean bill of health. So, if a doctor tells you that you’ve become deconditioned, try not to take it personally. Deconditioned does not mean lazy. It probably means you’ve been feeling like garbage and haven’t had the energy to run marathons and climb mountains whilst performing back springs.
Exercise as a treatment plan seems utterly hopeless when you do not have the energy to wash your hair, lift your head up off a pillow, or even speak. Trust me, I’ve been there. So how did I get from experiencing orthostatic intolerance while even sitting to tolerating hour long workouts composed of standing cardio and heavy (for me) weightlifting? S-L-O-W-L-Y. Very slowly. Seemingly impossible, but somehow possible. In all honestly, it is probably the achievement I am most proud of accomplishing.
My main goal was as follows, progression toward the ability to perform standing exercise and, in turn, to be able to function as a human. Therefore, I made sure to log my exercise and to make increases to either intensity or duration every time- albeit slowly. My plan was to start gentle exercise lying down, progressing to sitting, and then standing. I still remember my first session, which was stretching with my back flat on the floor. It was approximately 15 minutes long with a subsequent nap, also on the floor. I performed this every day for a week, then increased the intensity to seated stretching the following week in 5 minute increments, working my way to 15 minutes total. In addition to 15 minutes of stretching a day, I took advantage of any opportunity which presented itself to stand for at least 30 seconds at a time (washing dishes, brushing my teeth, getting changed, folding laundry).
Once I was able to perform stretching uninterrupted while standing for 15 minutes, I began to go to the local supermarket to walk. The supermarket was perfect because the temperature was always cool and I was able to use a shopping cart to steady myself. Every day I walked an aisle, adding an additional aisle as tolerated until I was able to walk the perimeter of the store. It was around this time I returned to full-time work, which required me to park in a garage. I increased the distance from my car to the building a row each week, until I was parked in the back of the structure.
I utilized the office gym on my lunch breaks. I continued my 15 minutes of stretching and grocery store walking, but added recumbent cardio (bicycle or rowing machine). This was also performed slowly and in 5 minute increments at first, building up to 30 minutes total. I took as many breaks as I needed to perform the goal duration for the day. However, I did perform the goal duration each time, even if cumulative. Some days I switched between the two machines during my breaks.
Once able to complete 30 minutes of uninterrupted recumbent cardio (typically cycling) I decreased the amount to 29 minutes and added an additional minute on the elliptical. I continued in this way, exchanging time on the recumbent bike for minutes on the elliptical, until I was solely using the elliptical at a slow and steady pace. After this mini goal was met, both pace and intensity were increased again in 1 minute increments which were alternated with slow and steady pace.
The next phase of my plan was to add weight training following cardio. I performed most exercises sitting, focusing on my legs to build muscle mass to aid vascular return. This is what I currently do 5-6 days a week, except for days which I train legs, or when I am ill/flaring. Leg days are isolated due to the large amount of muscles which are utilized. My cardio is typically high intensity interval training 30-45 minutes in length on the ARC trainer, spin bike, or elliptical.
I understand completely that I am fortunate to progress as much as I have. I wholeheartedly hope you are able to regain more ability than I have and return to normal life. Best of luck and health to you all.
Dysautonomia Daze 