By K W Warburton, The Reluctant Spoonie
Disclaimer: These are my personal opinions and experiences of POTS and exercise. They are not indicative of everyone with POTS. Always check with your doctor before starting an exercise programme for POTS.
When I was first diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), I read about the Levine protocol: a specialised exercise programme for those with POTS. I went to see a physiotherapist who started me on a similar graded exercise programme. At first, it was hard. I struggled with the ‘5 active minutes‘ a day that I was supposed to do. After being bedridden for over a year, my muscle strength was non-existent. I persevered to the point where I can now cycle 5 Km every day on my exercise bike. It has taken me over two years to get to this level of fitness. I was under the impression that exercise is good for POTS and with time, I would be able to wean myself of my medication and go back to living a ‘normal’ med-free life. I was recently told by a doctor that this is not the case and that ‘exercise will not help my POTS symptoms’. For the past few months, I have been feeling disheartened with my exercise regime. My POTS symptoms stopped improving and when I tried to wean myself of my Ivabradine, I could not last 2 days without it.
Why is exercise good in the early stages of POTS?
De-conditioning is common for those with POTS as when you first start experiencing symptoms, your activity level will decrease due to the nature of the symptoms. You can become de-conditioned within two weeks of inactivity and it doesn’t matter how active you were before you developed POTS. Regular exercise or gentle movements will help prevent you from becoming de-conditioned and will help you with your long-term recovery from POTS.
Why can’t I increase my activity level past a certain point?
I have other conditions that may be preventing me from increasing my activity level further such as joint hyper-mobility and chronic fatigue syndrome. Medications such as beta blockers which are commonly used in the treatment of POTS symptoms can also prevent you reaching a certain activity level.
What type of exercise is good for POTS?
There are many types of exercise that are recommended for those with POTS. A lot of people will start off with muscle strengthening exercises such as yoga or Pilates. Recumbent bikes are also popular for increasing leg muscle strength without having to stand up. Swimming and cycling are also popular in the later stages of exercise programmes after you have built up the required muscle strength for these activities. Some people with POTS are also able to go running and jogging when they are ready for a heavier cardio workout.
It is important to remember that everyone with POTS will have different set of symptoms and a different severity of the core symptoms (tachycardia, BP etc.) which will affect their personal activity levels. Just because someone else with POTS can run a marathon, it doesn’t mean that you have to.
Check out more of my POTS posts here.