Why POTS Patients Shouldn't Overlook Physical Therapists
When you struggle with a physical disability, perhaps looking into a physical therapist specialized in your disability can change your life.
I’m extremely lucky to have landed at Duke hospital instead of UNC hospital when I was medically evacuated from India. I was lucky that on Duke’s cardiac team there happened to be a dysautonomia specialist who was able to diagnose me with postural orthostatic tachycardia syndrome (POTS) on my first day at the hospital. However, it wasn’t medical doctors, nurse practitioners, physician assistants, or even nurses that have gotten me any resemblance of my old life back.
As hopeful as I was to be under the care of a POTS cardiology team, I was moderately disappointed. I got a diagnosis, some peace of mind from them and medication, but not much else. They did, however, connect me with Duke’s POTS rehab program and that was a lifesaver. Many people overlook the value physical therapists can be as part of your healthcare team, especially for POTS.
If you had a stroke or another brain/vascular injury, you likely would be spending a lot of time in rehab for recovery. POTS in many ways is like a brain injury, as your autonomic nervous system no longer responds correctly. It baffles me that many POTS patients, and frankly, many medical patients, are not prescribed physical therapy as a primary treatment option. My brother, a physical therapist himself, seemed almost excited when I got the POTS diagnosis. He immediately printed out the thick Levine Protocol manual, brought it to me at the hospital and said, “Just wait, a year from now you will feel totally different.” And you know what, he was right.
Every physical therapist I have ever seen has been completely committed to my recovery and well-being. They have coached me through my anxieties about working out with POTS. They have sat and talked with me on the floor for sometimes an hour in the first two months while I recovered from a session. They have lifted my spirits as I cried when I couldn’t even make it from the bathroom to the bike because of a flare. They have sat with me for over an hour at the time, helping me set goals and find ways to meet them despite having a debilitating illness. They have gotten me therapists and insurance extensions. They even called me at home when I was too ill to come to check in on me.
I honestly do not know where I would be without my POTS physical therapists. After over 70 one-hour sessions in a year, they know me better than any other healthcare provider. If you can imagine the cumulative effect of working with POTS patients every day for years, they have more experience working one-on-one with POTS than most top-level cardiologists and neurologists. When I have questions about my condition, I often go to them first, as they have always had the answers I needed. Diet suggestions? Check. Coping skills? Check. Meditation suggestions? Yup. Where to buy compression gear or even what type of electrolytes taste good? They know.
Whenever I go into a doctors office, my heart rate at check-in is usually obnoxiously high. Why? Because I often don’t trust them. I am more comfortable at physical therapy than at any other medical office and my heart rate is lower at check-in, even on stress test days (and those are nightmares with POTS). I trust them completely and I honestly cannot say that about any other provider I’ve seen. It saddens me that physical therapists seem to be one of the most underrated medical professionals because they can truly make a difference in your life.
If you have an illness that affects your functioning or mobility, don’t overlook physical therapists! There have been so many times in my life that I’ve gone to doctors and all they say is take a Tylenol and rest. Tylenol and rest haven’t fixed any of those issues, but going to a physical therapist has. I am not saying I have never found a doctor that helped me. Doctors can be very helpful and are integral to the management of many chronic illnesses. I know I cannot go without them for some parts of my health management; however, they are not miracle workers. Physical therapists aren’t miracle workers either, but they do have a unique skill-set that can fundamentally change how you address mobility and pain-related illness. Don’t let a potential resource go to waste!