Long COVID treatments 101
The format of these articles is insufficient to describe the many treatment options available for Long COVID, but I did want to review some of the major categories so that patients realize there is hope. While medications are the least important component of treatment, there are many different medication options that can have a meaningful impact on symptoms now, and also long term recovery. The best way to choose a medicine is to look at the whole picture, identify which symptoms are causing the most distress or affecting other parts of the treatment, and try to find one medication (or just a few) to treat as many symptoms as possible. My patients who have POTS, brain fog, pain, and migraine can benefit from all of them with medications like Venlafaxine and Desvenlafaxine. Patients who have severe insomnia, migraine, and strange tingling everywhere do great with medications like Amitriptyline and Nortriptyline. When there is fatigue along with a longstanding ADHD diagnosis and the brain fog makes it unbearable, stimulants can be extraordinarily helpful.
Step two is usually to improve sleep quality. Books could be written on management of sleep quality alone, in fact they have. Go to the Books and Devices page to see which ones my patients have recommended. Generally, sleep work starts with looking for medical contributors like Sleep Apnea followed by keeping a good diary of sleep behaviors. This can be done on your own, but I tend to recommend bringing in a psychotherapist to help identify patterns, triggers, and to help strategize for solutions. They even have a treatment called CBT-I or cognitive behavioral therapy for insomnia. There are workbooks and everything! There are even more complex interventions, but only a few people in any given state have specialized training in the behavioral management of sleep, so sticking with a therapist and a few online or print resources are helpful. If the migraines aren’t a huge part, a sunlight stimulating device can also be extraordinarily helpful in both treating the fatigue and depression, and regulating the sleep wake cycle.
Step three is to begin to plan your physical activity regiment. The most common concept in treatment of ME/CFS as well as Long COVID is called “Graded Exercise Therapy”. It’s recently gotten a lot of criticism, mainly because it isn’t one thing. It just means to start moving the body, not push until you feel like garbage, but to move enough that you can increase stamina over time. You can do this generally with any sort of exercise, and it must be very specifically geared to each patient, so the literature is very hard to analyze. However, if you’re having trouble on your own, getting into physical therapy is a good first step. If that doesn’t do the trick or is too hard, add in some low intensity structured routine like Yoga or Tai Chi. If you’re feeling adventurous or can’t even tolerate stretching, you can add on procedures like acupuncture, cupping, or chiropractic manipulations. The point is mainly to move the body as much as you can, but never so much that you feel knocked out for hours or days after.
Nutrition is usually step four, though it might be more important than the others. Many consider nutrition to be the most important component to overall health, but likely the most poorly understood and the most neglected. There is a lot of false and misleading data out there from people advocating for fad diets. Americans also have a very complex and emotion driven connection with food, ignoring the frequency and severity of eating disorders. It’s a big issue, but despite the complexity, it cannot be ignored that poor diet has been connected to heart disease, stroke, dementia, and nearly every other medical illness in the textbook. It also has a major impact on the immune system, which is likely the culprit behind the Long COVID syndrome in the first place.
While I have lots of tips and rules with dietary changes, they all come down to three main topics.
Patients know what their body isn’t tolerating. If it makes you feel sluggish and stiff after you eat it, it is going to make your Long COVID symptoms worse.
Anything that makes you suddenly lose a lot of weight is probably bad for brain health. Most healthy diets will either stabilize weight or gradually transition fat stores into muscle with some early unpredictable shifting of numerical weight and then very slow loss of weight.
It really does have to be sustainable and that means pleasure. That doesn’t mean you need sugar, since getting rid of sugary foods eventually makes other foods taste much better. However, sticking to a pleasure free diet has negative long term consequences and most people simply can’t do them for long.
Step five is to get a therapist. I don’t recommend everyone get a nutritionist or a sleep coach, and some people can do physical therapy with online guides, but I really do believe everyone with Long COVID should have a therapist. The mental health component is obvious, but that isn’t really why I recommend it. With brain fog, fatigue, and the way that reduced physical ability leads to a cycle of apathetic depression, the inertia is often insurmountable. Even if someone has the will power to force themselves to do everything I recommend above, psychotherapy has tools to make each of those tasks much easier. They can help monitor subtle effects of medications and help teach skills to tolerate side effects until they go away. They have an entire field of cognitive behavioral therapy for insomnia that is vastly superior to any medication for sleep. They can help people overcome barriers to engaging with physical therapy. They can help identify dietary triggers with various techniques, not the least of which is teaching people to fully examine their body sensations and how they are affected by foods. Therapists also help patients adjust to a new identity as “the person who is healing” rather than the previous role as “the worker”, and the detrimental role that often develops called “the sick person”.
Why can’t patients do this by themselves? I suppose they could, but it is very hard for a person to develop skills like these without help. Moreover, while there is some debate about whether the person of the therapist matters, there is no doubt academically that the process matters. Common factors research has proven that the main way to predict if therapy will be helpful has to do with the relationship with the therapist. Do they have empathy, a connection, and respect for the patient? Are their goals the same as the patient’s goals? A mental health app can never truly share a connection, or match their goals to the patients’ goals. I’ve also seen so many patients get worse when reading about mental health on their own. I no longer recommend books on trauma or psychotherapy guides to patients because without a therapist, they often lead to worsening of somatic symptoms and make patients resentful of the process. I call this being vaccinated against therapy, where a small amount of something dead leads to the body resisting exposure in the future. Luckily, for most therapies it doesn’t seem to matter how perfect or wonderful a therapist is, or even what their training or discipline is. Surely more training will lead to more available tools, but even without a higher degree someone can act as a stabilizing force for the process.
Lastly, with your Primary Care Provider, keeping an open mind about other medical contributors is vital. In the majority of patient cases, there isn’t a need for very many specialist referrals. However, a PCP should be able to consider if the shortness of breath requires consideration for lung disorders like Asthma, blood clots in the lungs, COPD, residual pneumonia, Sleep Apnea, or any causes in other fields. They also tend to know if they are good at evaluating those conditions, or if they need a pulmonologist’s help. Likewise, PCPs may consider hormone disorders, heart disorders, GI disorders, muscle disorders, or other brain disorders and bring in specialists when it makes sense. The biggest disasters I’ve seen in medicine involve patients trying to speed up the process by going straight to the specialist. Without context from a PCP, the specialist may be unable to identify what their role is, be resistant to consider anything that they can’t later manage, and may develop Ulysses syndrome: a disorder where physicians run inappropriate tests and go down rabbit holes that eventually cause the patient harm.
This is obviously a brief overview of the paths to treatment for patients with Long COVID, and there are many specific cases where the care becomes more complex. Read our new book Long COVID: The Journey for Help to learn more, now on Audible for those whose migraines limit their ability to read on tablet or paper. To discuss your symptoms directly with one of our providers, feel free to contact us today.
