Of course, we have all heard that exercise is vital for health. It is for most people, but there are some people who have health problems that can make exercise harmful.
For me personally, reducing exercise has been one of the best things I have done for my health and wellbeing. Despite this, many doctors will tell people to exercise regardless of how severe their pain, weakness, fatigue, or other symptoms are. This is dangerous and disgusting that they would put their beliefs over their patients wellbeing. Nothing is a one size fits all when it comes to health, so although exercise is good for most people, it can be dangerous to some.
PEM is a symptom experienced by many people with conditions such as Myalgic Encephalomyelitis, Long Covid, and Chronic Lyme. It is where a person experiences a horrific exacerbation of symptoms, triggered by exertion. PEM isn’t just feeling a bit tired and achy after exertion, it’s feeling like you’re dying, likely being bed-bound and possibly being stuck in a near paralytic state.
Exercise can be dangerous for people who experience PEM, leaving them bedbound for days, months, or sometimes even years after exertion. How is this supposed to improve someone’s health?
When I first started developing my chronic illness symptoms, I tried to keep up with able-bodied people. I tried to continue going on the trampoline and exercising, but it wasn’t healthy. I would struggle to walk afterwards and my heart rate would be close to the 200s, making me extremely lightheaded. The exertion would also trigger horrific flares where I would be so weak that I couldn’t breathe without conscious effort - I would have to strain just to breathe. It would trigger excruciating neck pain and the feeling of concrete in my muscles which would make them feel as if they were sagging and pulling my ligaments and bones with them. It was as if my muscles were a dead weight and not a part of my body anymore, this would make me vomit just from standing up due to the pain and discomfort it caused.
I don’t think words can fully convey how an episode of post-exertional malaise felt, but it felt like I was dying. One of my episodes was so severe that a doctor thought I may have a pancreatic tumor or may be developing motor neuron disease (I have neither.) Exercise and exertion would exacerbate these symptoms and it felt like I was stuck in Hell. It was so bad that I hoped the UK would introduce medically assisted death for people with chronic illnesses.
So what made things better for me?
I decided to listen to my body, and reduce exercise. It was one of the best things I did. My muscles started returning to normal and didn’t feel like they were filled with concrete anymore, I no longer had episodes of awful vomiting, and it was extremely rare for me to experience breathing issues from muscle weakness anymore. I no longer had to consciously focus to breathe, I would breathe automatically as my diaphragm wasn’t so heavy anymore, and I wouldn’t wake up unable to breathe in the night and with low blood oxygen anymore. Exercise would trigger muscle weakness and fatigue so severe that it made me unable to breathe properly. With reduced exercise, my blood oxygen stayed normal.
I used to struggle with high blood pressure, and exercise would make this a lot worse. Sometimes I would go into episodes of stage 2-3 hypertension with exercise, my heart would skip beats or beat too much, and my eyesight was bad because the high blood pressure caused me to see the blood vessels in my eyes when looking around as if they had become floaters.
By stopping / reducing exercise, my blood pressure normalized and my heart didn’t skip beats anymore. I no longer see the blood vessels in my eyes. Exercise was triggering my high blood pressure, any form of movement would make it worse as it was putting strain on my body.
Exercising less has also allowed me to eat less. I used to wake up to eat around 4 times each night. I would have blurred vision, severe weakness, loss of sensation, loss of coordination, and irritability that would only go away after eating. When I reduced exercise, I would only wake up to eat once in the night or not at all.
I believe that the reason I was waking up in the night to eat was because that exercising during the day would take so much energy out of me that my body didn’t have the energy to perform basic and vital functions, so I would have to eat to give it some energy back. My breathing would always improve after eating too, and I would suddenly become less weak.
It turns out that exercise for me actually causes weight gain, as it forces my body to eat more. For example, not only did I used to have to wake up to eat many times in the night, but one day my dad took me to a seaside town. There, I speed walked for around 15 minutes. Sadly, this speedwalking took a lot out of me so I was stuck in an adrenaline surge for hours afterwards and I could hardly breathe. It took eating an entire pizza, 2 muffins, and multiple fruit snacks to get the strength back in order to just breathe without straining so that I could sleep and not wake up unable to breathe after 5 minutes. This is a lot of food, but it is the only way I could breathe as I needed the energy and strength that the calories could give me in order to breathe. However, if I used my wheelchair rather than trying to exercise, then I would not have needed to eat that much. The next day, I was strong enough to breathe without straining but I couldn’t walk, so I had to use the wheelchair. This is the impact of post-exertional malaise. If I hadn’t tried to exercise by speed walking for 15 minutes then I wouldn’t have struggle to breathe, I wouldn’t have needed to eat so much, and I wouldn’t have had to use a wheelchair the next day.
Doctors who try to push their patients to exercise despite it increasing their blood pressure, triggering unaliving thoughts due to the pain and discomfort, lowering their blood oxygen, stopping them from breathing properly, destroying their ability to sleep and leaving them bedbound or wheelchair bound for days after need to realize that there is no one size fits all to health.
Some people have told me that “exercise will allow you to live a longer life!” but I know this isn’t true as living with high blood pressure, breathing issues, passive unaliving thoughts, sleep issues, a horrific level of suffering, low oxygen, vomiting, skipped heartbeats, and being bedbound or wheelchair bound is more likely to cause a shorter lifespan than a longer one and those are the issues that exercise triggers for me. If I reduce exercise and have normal blood pressure, normal blood oxygen, no issues breathing and am able to be productive and not feel like I am stuck in a living hell, then I am pretty sure that is what would give me a longer life. Even if it didn’t, I’d rather have a short life without the Hell of PEM flares than a long one living with frequent PEM flares.