When you struggle with a physical disability, perhaps looking in 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. Lucky that on Duke’s cardiac team there happened to be a dysautonomia specialist who was able to diagnose me with 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 PT 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 that 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!
Interested? Here are some resources:
- PT for POTS (Johns Hopkin’s Program)
- Levine Protocol for POTS
- Physical Therapy Specialties
- Latest Research in Physical Therapy
- Why is Physical Therapy Important
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An interesting post. What sort of treatments do the PTs do for you?
I’m not sure if there’s anything like this available in Australia? Do you know? Also is your PT funded and through the hospital or do you have to pay privately?
It is a form of cardiac rehab that follows the Levine protocol for POTS. Essentially, I am retraining my brain to tolerate and respond to exercise appropriately. First we start with recumbent exercises (Nustep/recumbent bike) and eventually get to running if you go that far. I’m currently at the rowing machine stage. They also use an EKG to monitor heart rhythm while you are doing this if that’s a problem for you. As with everything in America, it is hella expensive, but it honestly depends on your insurance plan- some people get a certain number free per year some pay copays. Either way I usually hit my out of pocket max of 10k/year with my family. I’m not sure about Australia, but some cardiopulmonary PTs are willing to go with the Levine protocol and learn how to do it with you.
This is a great post. I suffer with PoTS as well and am pretty much bedbound unfortunately but hopefully that will change when I start having hydrotherapy again with a new PT as my previous one left. I have seen so many PT’s over the years but they either run a mile or give up if I am not improving. I have seen some great ones as well but sadly left.
I don’t mean to be negative, but this protocol should be used with caution. If it works for you, that’s wonderful. But it didn’t for me. I tried it, and now have a new normal, even less energy. It could be because I am no longer a young woman. (Hey doctors, there are a lot of men and old women with POTS). Or maybe I have a different variety of POTS. But I have found that for me, pushing through is not a good idea. It generally leads to a new normal.
The major problem that I have is exertion intolerance, but my only problem with food is finding the energy to eat it. We all need our own individual treatment for our personal variation of POTS. Graded exercise is just like all the other possible treatments available to manage symptoms, it works for some of us.
Which is why I stronger encourage people to do it with physical therapists first. I think a lot of people start off at the 30 min base pace and that’s just not possible for some people with POTS. I started at 2 mins and it’s taken me a year to work up to 50. That being said, if you go super slow and it just doesn’t work, it may not be for you (esp for the folks with ME/CFS). Thanks for the read!