Post Exertional Malaise
One of the most debilitating symptoms experienced by patients with Long COVID and Myalgic Encephalomyelitis is called Post Exertional Malaise (PEM). It is also considered one of the most difficult to treat, but not for lack of options. The true barrier to PEM treatment is that PEM is not just one thing. In this article, I will separate out a few of the many isolated patterns of symptoms that are often referred to as PEM to demonstrate why it may require some investigation and troubleshooting, but is often very treatable.
Pattern 1: I used to love to exercise, but now I can’t walk for more than 10 minutes without feeling wiped out. I tried PT, but the exercises they gave me were so exhausting that I had to lay down for days. They told me to push through the discomfort, but I just feel like my whole body is drained, and my muscles ache so much.
Pattern 2: Most days I feel ok, but some days I feel weak and dizzy when I stand up. I tried to push through the dizziness, but then I can’t think and my body feels like lead.
Pattern 3: Sometimes I can do a lot, but some days everything hits me. Lights are too bright, sounds are too loud, and I feel like my body and brain are moving in sludge. This is usually after I’ve done too much. Too much activity. Too much socializing. Too much anything…
There are many other patterns, but these three patterns point to different core mechanisms that have very different responses to treatment.
Pattern 1: Some PEM is a muscle predominant energy problem. Usually mental activity is well tolerated and even being upright isn’t the main trigger, but any marked exertion such as cardio exercises or others lead to severe muscle aches and whole body fatigue for days. Sometimes this is severe enough to limit any physical activity, but this version of PEM usually requires a physical trigger big enough to fatigue the muscle. Other triggers, especially certain foods like Chinese food or fatty foods, can definitely cause symptoms too.
Pattern 2: Some PEM is an autonomic predominant energy problem. Almost any trigger can cause it because of the connections between organ systems called “the allostatic load model”. Even emotional stressors can lead to changes in the body’s hormones (steroids) that lead to a cascade of changes in the autonomic nervous system. For these folks, being upright is probably the biggest easily identifiable trigger. If they are sitting or laying flat, they are pretty good. If they spend much time standing, they can feel wiped even after they sit down.
Pattern 3: Some PEM is a migraine associated energy problem. Similar to the autonomic nervous system issues, migraines can have many triggers from toxic foods to toxic people. While people sometimes live in a state of migraine (sometimes with no headache at all) most people have spells that last 4-8 hours. When PEM is migraine associated, there are usually other symptoms like light sensitivity, sound sensitivity, nausea, and motion sensitivity. Also, there are a thousand perceptual disturbances with these PEM episodes from visual distortions like glowing orbs or “pixilated vision” to tingling and numbness in various places in the body.
Of course, some PEM is a combination of the above and it can be very difficult to tease out. Also, muscular PEM can kick off a migraine, and some people’s autonomic instability is much worse during a migraine spell. Luckily, many medications overlap such as propranolol and venlafaxine which can help multiple types of PEM spells.
Triggers are key. Any identified trigger can both point to the underlying PEM type and offer medical and behavioral solutions (including finding ways to avoid those triggers).
Pushing through is always ill advised. To be sure, treatment of all versions of PEM involves the goal of increasing ability and stamina, and this often involves finding ways to be upright and physically active, but not to the point of feeling wiped out for days.
Trigger avoidance and behavioral/natural approaches to treatment are always the most vital, but sometimes medications are needed to jump start the process. In some cases, the body never gets past the need for medical assistance. Just like blood pressure. Many people can lower their blood pressure through healthy living, but you can’t exercise with a BP of 200/120.
Always start by treating what is treatable. If you have diabetes, treat it. If you have sleep apnea, wear your CPAP. There is no reason to fight uphill.
Sleep is vital. Nutrition is vital. Mental wellness is vital. Doctors know this, but doctors are not trained in how to treat these things. Luckily, nutritionists and therapists are.
If you can’t tolerate any cardio, try lower intensity exercises. Numerous studies have shown exercises like Tai Chi are even better for neurologic health and even cardiovascular health than cardio style exercises. When you can’t tolerate being upright, consider various forms of supine exercises. If you cannot tolerate supine exercises, often other physical therapeutics like acupuncture and massage can help. Don’t do what you can’t tolerate, find what you can tolerate.
If there is ANY clear orthostatic component, trialing compression wear (at least up to the abdomen), increasing water intake, and trying to add electrolytes should always be considered/reconsidered.
At the end of the day, Post Exertional Malaise is treatable, even if the treatment is just finding ways to function while avoiding triggers. Some people get way better with medical treatment and various forms of physical, nutritional, and psycho therapies, and some people still really struggle despite doing everything right. However, if you would like to discuss your PEM with someone who can help you consider pathways to healing, don’t hesitate to contact us.
