You may have had COVID-19, and still don't feel well. You aren’t alone. Many who have recovered from COVID are still dealing with the aftereffects of the infection even months after initial onset of the virus.
In many cases, people weren’t able to get tested when they were first ill because tests were scarce. As the COVID long haul symptoms list continues to grow we can safely recognize that earlier in the COVID-19 pandemic, it was more difficult to identify COVID long haul. Thus, many have been left with symptoms and no real roadmap for how to start to feel better.
Not only might you be managing the physical after-effects of COVID, but you may also be managing an emotional toll. As we learn more about COVID long haul, it can be hard to manage that your employers, doctors and friends refused to believe that you had COVID-19 in the first place, let alone why you still aren’t better after so long.
COVID Long Haul Symptoms
Long haul symptoms are associated with other mysterious - and even controversial conditions such as Chronic Fatigue Syndrome, Chronic Lyme disease and POTS (Postural Orthostatic Tachycardia Syndrome). It can be hard to identify if you have COVID long haul or something else, but listening to your body will help you be able to identify if you have long haul.
Up to 100 symptoms seem to jump between organ systems, and include, but are far from limited to:
- Shortness of breath
- Rapid heart beat
- Severe fatigue
- Brain fog
- Joint pain
- Muscle pain
- Acid reflux
- Other digestive issues
If you are experiencing any of these symptoms, it is important to see your physician to make sure there aren’t complications from the virus, to confirm something else isn’t going on and to help support your return to good health.
“We are very careful with regard to diagnosing patients with POTS, as we know COVID-19 can cause blood clots or scars in the lungs, which cause similar symptoms as POTS but would require very different treatment”.
- Tae Chung, MD, COVID-19 and POTS: Is There a Link?
Doctors who aren’t familiar with POTS and COVID long haul syndrome, may dismiss your symptoms or suggest that they are psychological in nature. It is important to understand that there is a growing body of clinical research to support this post viral syndrome.
In a recent study of covid patients who did not require hospitalization, the Journal of the American Medical Association stated “more than a third of the participants had not returned to their usual state of health after testing positive...but even a quarter of those aged 18-34 years said they had not yet regained their health”.
Another study of Italian patients found that “none of the patients had fever or other symptoms of acute illness, but about .44% of them had a worsened quality of life.”
8 Ways to Talk to your Doctor About Post-COVID Symptoms
Interestingly, we now have found that 80% of COVID patients experience at least one lingering symptom. You'll know when something is off post-COVID, and here are some ways to approach your doctor on your lingering symptom(s).
- Come armed with written details about 1) when you had COVID, what symptoms you experienced with initial disease onset and how long you had them 2) timeline and specifics about the symptoms you have continued to experience to date.
- Find your voice: If your doctor says that he won't treat you since you never had a positive polymerase chain reaction (PCR) test, politely explain that your symptoms were consistent with COVID-19 and the specifics of your case, i.e tests weren’t available, you tested too late (virus load was too low to detect) or you were turned away since you didn’t need hospitalization, etc.
- Ask your doctor to check your heart and lungs for complications from the virus.
- Discuss your preexisting conditions or viral infections (other than COVID).
- Ask for lab work on blood clotting risks and confirm that you aren’t deficient in any important vitamins or minerals (i.e. Vitamin D, iron, Vitamin B12 etc).
- Ask if physical therapy could help and ask for a referral.
- Ask if they are aware of any specialty clinics or programs that are working with COVID long haul patients in your area. If so, obtain a referral if needed
- Take notes during the appointment, in case you go for a second opinion and need to refer back to what was said.
If you feel your doctor isn’t listening or implying that what you are experiencing is all in your head, you might want to consider finding a physician that will take you seriously. Functional medicine or naturopathic practitioners are also well versed in approaching COVID long haul, and might be a good option for you to explore for support in managing your symptoms.
Importantly, don't expect your doctors to have all the answers. This is a new illness and it is still being researched and understood. Additionally, at least right now, there is no pill or magic cure to address this complicated syndrome, but there are options that can help you identify your triggers to manage your symptoms daily. Ultimately, listen to your body and tune into its needs.