IS DECONDITIONING A CAUSATIVE OR CONTRIBUTING FACTOR IN POTS?
Another part of POTS that we POTSies sometimes don't want to admit is that if you've been stuck in bed with a serious illness for any length of time (whatever the cause), your body will become deconditioned and deconditioning causes POTS like symptoms even in super healthy people.
For example, NASA has done extensive deconditioning research on astronauts, who are in top physical form when they blast off from earth. After even a week or so in space, their bodies become deconditioned and when they land back on earth, they have symptoms just like POTS - tachycardia, fainting, erratic blood pressure, low blood volume, loss of muscle tone, loss of bone density, etc. Many astronauts have to be carried out of the space shuttle laying down on a stretcher, which is why you never see pictures of the crew coming home - just walking to board the shuttle when they launch. After a 3-4 months in space, it takes about 2-3 years for astronauts to regain their bone density and they lose about 22% of the blood volume. Some astronauts have to take a common POTS drug - Midodrine - before returning to the earth's gravity. Without the Midorine, which increases the astronauts blood pressure, the astronauts would feel the symptoms of their low blood volume and low blood pressure immediately upon entering back into the earth's gravitational field, and they would not be able to land the shuttle - they'd probably pass out just like us POTSies. So if a super healthy astronaut can get his or her butt whooped by POTS like symptoms after a few weeks of deconditioning in space, imagine what a few months or years of deconditioning does to us regular folks, some of whom have other health problems to begin with. To combat the orthostatic and blood volume issues the astronauts experience when they return home form space, they do special exercises meant to build up their bone density, cardiac efficiency and blood volume. In theory, these exercises should help some POTSies, especially those who are deconditioned and those suffering with low blood volume (hypovolemic POTS).
One really important thing to note is that POTS related deconditioning is not caused by laziness or a lack of motivation. It's caused by physiological changes that occur in your body. In fact, most POTSies are young women who tend to be thin or a healthy weight, and many were stellar athletes or dancers just before becoming sick.
In my case, I have always been a tomboy and into sports and outdoor activities. Surfing, mountain biking, cross country skiing, kayaking, gardening - these things were part of my weekly routine. I was snowboarding in VT for seven days in a row before my POTS symptoms started, so I know the initial trigger wasn't deconditioning in my case, but after a year of being sick and not being able to exercise much (or even walk or stand up sometimes), I am definitely out of shape and thus deconditioing is only making my POTS symptoms worse. It's a vicious cycle and it's very hard to break out of it.
So how do you overcome the effects of deconditioning? Get moving! There is a team of doctors from Texas who, taking a cue from NASA's experience, believe that some POTS patients have reduced cardiac output, basically caused by a shrinkage of their heart due to deconditioning. Check out their recent study, which showed that a majority of their study participants did see noticeable improvements after 4 months of a carefully designed cardio/weight lifting exercise program. You're doctor can get in touch with the Texas doctors to find out about the exercise protocol they developed. They won't give it to patients directly because it needs to be supervised by your local doctor. Have your doctor tell them you are interested in learning more about their POTS Registry and the POTS exercise protocol they have developed.
In addition to the Texas study, doctors have long known that thin, young women tend to be easily susceptible to deconditioning, and if you've been paying attention to all these POTS websites, you see that most POTSies are thin, young women. That's not to say all POTSies have deconditioning or that a vigorous cardio workout is the cure for all POTSies, but it is something all of us should think about.
In terms of needing more exercise, I am right there with you. After I was put on strict bed rest by a well intentioned but misguided doctor in July 2009, I literally saw my leg muscles disappear before my eyes. I looked like big bird with those awful bird legs. That's the worst I felt in the 14 months I've been sick and it was when I was the most deconditioned.
I can't do a great cardio work out like I want to, but once we were able to get my medications and IV saline therapy to the optimal doses, I was able to start walking around the house a little. I do laps during TV commercial breaks. I walk from the couch to the kitchen, to the dining room, to the den and back to the couch. By the time I am back at the couch, my show is back on and I am totally out of breath with my heart racing. Just as soon as my body has recovered from the last lap, it's time for another commercial and another lap. After doing this everyday for a few weeks, I am able to do two or three laps now. Slow progress is better than no progress! thighmaster). I stretch all day long and try to do a few standing yoga moves at least once a day (warrior pose is my favorite). I leave my yoga mat and weights out all the time so I don't forget. I wear 2lb. leg weights on each leg every few days (they make me so exhausted).
I am doing this with the hope that I will be accepted into the Texas POTS exercise protocol program. I heard that it involves reclined or sitting exercises like rowing machines and recumbent bicycles, as well as floor exercises and swimming. My doctor and I are filling out the forms and waiting to hear back from the Texas team. If I am accepted, I will start out doing floor/reclined exercises for a few months, then transition into upright exercises. I am cautiously optimistic about this and praying that it helps me feel better.