POTS versus deconditioning: the same or different?
Journal: Clin Auton Res. 2008 Aug 12. [Epub ahead of print]
Authors: Joyner MJ, Masuki S.
Affiliation: Dept. of Anesthesiology, Mayo Clinic, 200 First Street
SW, Rochester, MN, 55905, USA, [email protected].
NLM Citation: PMID: 18704621
The 2007 Streeten Lecture focused on the idea that physical
deconditioning plays a key role in the symptomology and
pathophysiology of POTS. Parallels were drawn between the
physiological responses to orthostatic stress seen in POTS patients
and the physiological responses seen in "normal" humans after
prolonged periods of bedrest, deconditioning, or space flight.
Additionally, the idea that endurance exercise training might
ameliorate some of these symptoms was also advanced. Finally,
potential parallels between POTS, chronic fatigue syndrome, and
fibromyalgia were also drawn and the potential role of exercise
training as a "therapeutic intervention" in all three conditions was raised.
The conceptual model for the lecture was that after some "initiating
event" chronic deconditioning plays a significant role in the
pathophysiology of these conditions, and these physiological changes
in conjunction with "somatic hypervigilence" explain many of the
complaints that this diverse group of patients have. Additionally,
the idea that systematic endurance exercise training might be helpful
was advanced, and data supportive of this idea was reviewed.
The main conclusion is that the medical community must retain their empathy for patients with unusual conditions but at the same time
send a firm but empowering message about physical activity. As
always, we must also ask what do the ideas about physical activity
and inactivity and the conditions mentioned above not explain?
* * *
The one thing that doctors do not like to hear is when I contradict their assumptions about deconditioning. When I first got sick, I was exercising on a daily basis. Suddenly, I couldn't make it the 10 feet from the bed to the bathroom without needing a half-hour nap on the bathroom floor before crawling back to bed. It is categorically IMPOSSIBLE to decondition that far, that fast.
Similarly, when I entered the current relapse, I had been walking 4 miles a day (2 miles to work, 2 miles home), and within just a couple of weeks just the 4 blocks from the bus stop to my desk exhausted me so much that I had to rest for an hour before starting to work. Again, any doctor worth his salt will tell you that that's not "deconditioning", that's indicative of some sort of severe illness that's sapping the patient's energy.
However, since it doesn't match up to the prejudices about CFS patients being too lazy to exercise, I've been told by doctors to "stop lying" about my prior exercise habits; they profess to know better than my friends and I what I had been doing just before getting sick. Other patients were marathoners and Olympic athletes before being struck down; unlike me having to say "take my word for it", they have medals and videotape proving that they were previously able to do what they say they did.
A little more empathy and a lot less accusation would be nice for any of us with an invisible chronic illness.
Any doctor who can't express empathy with a patient who's so seriously ill that they are unable to work probably needs to re-evaluate his career choice. Perhaps lab work where there are no patients hoping for a kind word would be more appropriate.