Missing More is a series of posts sharing patient experiences of ME and exercise. If you would like to contribute your story, see this post.
Almost everyone who has ME experiences worse symptoms standing up, even before we attempt to exercise. About a third of us suffer from a comorbid condition called Postural (Orthostatic) Tachycardia Syndrome (POTS), although this is often undiagnosed and untreated. It produces heart rate abnormalities which are objective and measurable. Unfortunately these two conditions often create a vicious cycle. Exercise can improve POTS but usually worsens ME.
Here Adrian* shares personal experience of the difference between the deterioration experienced after ignoring heart rate during graded exercise therapy and the benefits of using an alternative, heart rate based form of activity management.
GET – it didn’t work for me
I was given a heart rate monitor after being ill with ME for 6 months, a physiotherapist had me do a metabolic/CardioPulmonary Exercise Test/expired gases test, which confirmed that I was severely physically disabled. He found that, as he has found with all his ME patients, my anaerobic threshold was abnormally low at 100 beats per minute. I was told to keep my heart rate under this crazy impossibly low number. It seemed nuts as my HR would be 140bpm getting out of bed and 170-180, walking to put the rubbish out.
Next, I saw an exercise therapist for advice, she said not to use a heart rate monitor, instead she recommended being guided by how I felt, and I started a gentle version of [the controversial study] PACE style graded exercise therapy (GET). Unlike hard core PACE style GET, I was to listen to my symptoms and not push through pain/symptom flares.
The hard part was the delay in the onset of the worsening of my symptoms, typically by 2-3 days.
We soon increased my walking to 20 minutes a day and exercise to 40 minutes, I was on a roll and very excited. I loved doing the exercises and walking and felt great while exercising. However, my health was deteriorating fast, soon I felt like I was choking after walking/exercise and I had to lie on the floor or bed for much of the day unable to sit/stand or talk. I was really scared, as I know how bad ME can get and I was deteriorating rapidly, my life was out of control.
So I went cold turkey and stopped exercising and walking. I stayed in bed resting as much as possible Within, 10 days my resting heart rate dropped 15 beats per minute.
Next, I met with my exercise physiologist and we revised my program, introduced heart rate monitoring and re-introduced 30 seconds of recumbent exercise every second day. Increasing by 10 seconds every second day, if my heart data ‘permitted”. This was a turning point in my health and now 18 months later, my quality of life, is very much improved. I have far fewer symptoms and my symptoms are not as severe. The improvements can all be objectively verified and watching my heart data improving keeps me on track and gives me hope.
Now, my heart rate is only 100 beats per minute walking to my gate, not 180 beats per minute.
I’m still largely bedridden but able to go out for coffee with friends etc…I’m now doing 48 minutes (24 lots of 2 minutes with 3 minutes rest in between) of recumbent exercise every second day, followed by a 2 hour meditate/sleep/rest.
I have gained control over my life. It is an easy task to plan my day which consists of resting and resting, far more than I ever thought needed. I review the previous day’s heart rate trace and take that and my resting heart rate, orthostatic rate, heart rate variability into consideration.
If you found this post interesting, read our series of posts about Missing More After Graded Exercise Therapy.
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*Adrian is a pseudonym