More than a year into the pandemic, one thing’s certain: if you’re post-COVID and inflammation and other symptoms are a problem, you’re not alone.
It’s been awhile since my COVID infection. Why do I still have symptoms?
Most people who get COVID and recover will do so within about a month. However, others describe their symptoms dragging on and on, with seemingly no end in sight. And still others describe having an overall mild COVID experience, recovering, and being with hit with symptoms later.
Experiencing persistent symptoms more than 6 weeks after infection has been termed many things but is still being researched. Some names include post-COVID infection, long-haul COVID, long COVID, and more. The dynamics behind why and how COVID symptoms persist continue to be noted and studied. But we do know that, like with any infection, your immune system mounts a response to COVID. Inflammation is an important part of that response and defense. However, regardless of the source, too much inflammation, as well as chronic inflammation, create problems in the body and symptoms.
In some people with COVID, it’s possible that the immune system fails to tamper down its response post-infection. With inflammation going on at a higher level or longer than it should, symptoms and issues arise and persist.
Are women more likely to be COVID long-haulers? What else puts you at higher risk for COVID and inflammation long-term?
A September 2020 article published in The Journal of the American Medical Association estimated approximately 10% of people who had COVID go on to experience ongoing symptoms. Other estimates are as high as 33%. How big of an issue is that? As of late March, the United States recorded approximately 30 million COVID infections. If 10% become long-haulers, about 3 million individuals will experience long-term, and sometimes debilitating, symptoms. At the higher end of that, 33%, more than 9 million Americans could potentially be long-haulers.
What’s also important to know is that, even though the death rate for women is lower, more women than men have issues with long-haul COVID. According to a hospital in Paris, about 75% of COVID long-haulers they examined were female. So which women are most at risk? Unfortunately, there’s no way to be sure quite yet. Just because you’re not at high risk for COVID complications doesn’t mean you’re safe against having long-term symptoms. While many long-haulers do have high-risk conditions, others who suffer with long-haul COVID and inflammation have no known risk factors at all.
Differences in women’s immune systems may explain why they’re more likely to experience long-haul COVID
As a whole, individuals biologically born as women (with X and Y chromosomes) tend to have more robust immune responses to viral infections than men. A female’s immune system has some key differences (such as greater amounts of T-cells, B-cells, etc.) This may be the reason behind the fact that the death rate is lower for women. But it can also explain why the long-haul rate is higher. The greater amount of immune-system related genes associated with the X chromosome (which women have two of) means that there’s more potential for mutations to happen and result in autoimmunity.
What ages are most likely to get long-haul COVID?
Along with reports on gender, information has emerged on how age plays a role in your likelihood to experience post-COVID symptoms. Reports show 27% of COVID patients under age 39 have experienced persistent COVID symptoms. That’s only slightly lower than the 30% of patients who are aged 40 to 64.
What kind of symptoms can COVID and inflammation cause?
Most long-haul COVID symptoms are identical or similar to those that you see with COVID infection: loss of smell or taste, headaches, fatigue, joint pain, and more. We explain how too much inflammation can lead to a few symptoms and system-wide changes.
Fatigue from COVID and inflammation
Overall, the number one symptom COVID long-haulers say bothers them the most is fatigue. Inflammation plays a role in this. As your immune system releases cytokines into the blood to respond to a germ, your energy level will naturally decline as your body does this work. This is necessary and can help you rest while you have an active infection. However, the problem arises when inflammation continues and becomes chronic, creating fatigue even when a threat is no longer present. For some, fatigue may be the feeling of simply being run down or not having enough energy. Others might feel fully debilitated by the intensity and pervasiveness of their fatigue, feeling too ache-y and tired to even go about a simple morning routine or normal tasks.
Headaches post-COVID infection
COVID and post-COVID headaches are mostly described as involving the entire head, rather than being one-sided. The pain can range from mild to severe pressure and can come and go or be ongoing. There has been some links made between loss of smell and headaches, but studies still need to be done on this. The reason COVID can make you suffer headaches likely involves many factors. However, we do know that COVID crosses into the central nervous system and brain via several different routes.
With ongoing headaches, talking to your primary care doctor is a must. You may be referred to a neurologist or sent for imaging to rule out clots or other issues.
Menstrual cycle changes
Another effect some women experience with long COVID is a disruption to their menstrual cycle. Many women say their physicians shrugged off the connection, but it’s absolutely possible, and there are several reasons why this could happen after COVID.
The simplest explanation is a well-documented one. Infections, as well as conditions such as PTSD, trauma, anxiety, chronic pain, chronic illness, pelvic inflammatory disease, and others can lead to changes in your menstrual cycle. While other things may be at play, conditions like these often come with a high level of stress. Any stress response you have can easily affect hormones that are needed for reproductive functions.
What’s also possible (but needs more time and research) is how COVID affects the different systems of your body. So far, we know COVID can impact function throughout the body, such as the lungs, circulatory system, the nervous system, the liver and kidneys, the brain, the gut, and more. With so many systemic effects and until we know otherwise, we need to consider that it could impact the reproductive system to some degree too.
Will getting a COVID vaccine help with my long COVID symptoms?
Some people who have ongoing COVID symptoms have said they feel better after getting a COVID vaccine. But why? As of right now, no studies have proven if or how a vaccine might reduce long-haul COVID and inflammation. One idea is that, with long-haulers, some virus particles may still be in a person’s system. These particles create an ongoing inflammatory response. Another possibility is that being sick with COVID may reactivate other viruses you’ve had in the past. However, it’s important to remember these are just theories at this point.
But anecdotally, the evidence is growing for a vaccine helping out COVI long-haulers. Diana Berrent, founder of the COVID resource and non-profit Survivor Corps., initiated a poll of how approximately 700 COVID long-haulers felt post-vaccine. Nearly 40% of them said they experienced relief from their symptoms after getting a COVID vaccine. In contrast, 46% said their symptoms stayed the same.
I’m really struggling, but my physician doesn’t believe in long COVID and won’t listen to me. What should I do?
Unfortunately, for long-haul COVID and a variety of other situations, bias exists in healthcare and medicine. We’ve seen it happen to women, people of color, those of lower socioeconomic status, and more. While testing and clinical examinations are important, so is patient experience–your experience. You deserve a provider who, at a minimum, listens to it and values it. At best, healthcare providers who don’t listen to you or believe your story don’t deserve to be a part of your medical team. Ideally, they wouldn’t be practicing medicine at all.
If you have the means and resources, find a new provider. Call and explain your issue when making an appointment and ask if the physician has had any experience with treating or evaluating long-term COVID. (Some rheumatologists are treating long-term COVID.) Many times, you’ll be able to infer the level of help and acceptance you’ll receive just in that response alone. (For tips on finding the right providers for you, check out this piece by Dr. Sara Smith.) Another option is to seek the help of a licensed naturopathic, integrative, or functional medicine physician. All have been to medical school; however, the last two are often more open and willing to discuss and consider alternative and supportive options.
How can I support my body with long-haul COVID and inflammation?
With how new COVID still is, treating long-haul symptoms takes trial and error. From a pharmaceutical standpoint, some physicians are prescribing medications similar to or used in autoimmune conditions. (In autoimmune conditions like lupus and rheumatoid arthritis, the immune system is an inflammatory state and mistakenly attacking the body.) These may include drugs that have a significant effect on dampening inflammation, such as corticosteroids like prednisone or even biologic treatments like Enbrel. Also, the FDA is currently holding a trial on a special monoclonal antibody as treatment for long-haulers.
Natural and lifestyle ways to support yourself with long-haul COVID
It’s so very difficult to feel sick and fatigued for an extended period of time. Any type of chronic illness leaves you more likely to develop depression. Schedule time to talk with a licensed mental health counselor, whether one you are familiar with or through a telehealth platform, like Teladoc.
Prioritize rest and light movement
You’ll also want to support your body with rest. Prioritize breaks throughout the day and don’t stay up late at night. Aim for meditation and light movement, such as stretching or a gentle yoga class. Don’t push your body beyond what it feels capable of in the moment.
Focus on gentle, supportive nutrition
Also, eating a variety of colorful foods is important and so are getting enough healthy fats. Limit alcohol and processed foods that are full of sugar. Long-haul COVID is no time to start a diet, count calories, cut out macronutrients, or try fasting intermittently. Ultimately, nourishing your body is important for a number of reasons, and giving it what it needs will help reduce stress (and therefore, inflammation).
Address nutrient deficiencies
Along with all of the macronutrients and fresh foods, your body needs a variety of micronutrients to function and optimize your immune function. Discuss testing your status of vitamin D and several key nutrients that greatly affect the immune system, such as: zinc, selenium, folate, vitamin B12, and any other your physician believes could be necessary.
Take steps to minimize stressors you can control
It can be hard for ourselves and the people around us to adjust to what it means to have symptoms that affect our lives beyond a week or two. One of the best things you can do is set boundaries and not feel guilty about it. Boundaries help us reserve our physical and emotional energy and are essential to reducing stress. If something’s not an absolute must, it’s time to let it go or say no.