Life with Chronic Conditions in the time of Covid: Long Haulers (Lingering Illness)

Months after COVID infection, some people, possibly as many as 30%, are still dealing with fatigue, brain fog, trouble concentrating, shortness of breath, heart palpitations, lung damage, gastro distress and other symptoms, that can come and go, varying from patient to patient. Referred to as becoming a “long hauler, “ it is occurring across age groups and regardless of hospitalization, or pre-existing conditions.

 

In July, Anthony Fauci Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases said in a Covid-19 webinar organized by the International SIDs Society, “Anecdotally, there’s no question that there are a considerable number of individuals who have a post viral syndrome that really, in many respects, can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus.” He noted that symptoms are highly suggestive of chronic fatigue syndrome. As Their Numbers Grow, COVID-19 “LongHaulers” Stump Experts

 

Adults with severe illness who spend weeks in intensive care, often intubated, can experience long-lasting symptoms, but that’s not unique to patients with COVID-19. What’s unusual about the long haulers is that many initially had mild to moderate symptoms that didn’t require lengthy hospitalization—if any—let alone intensive care.

 

One study of 292 people, who did not require hospitalizations, found that more then a third didn’t return to their usual state of health 2-3 weeks after testing positive. The older the patient, the less likely they were to return to their pre Covid health status. However, a quarter of the youngest people, aged 18 to 34 hadn’t regained their health.

 

Maybe we have learned from Lyme Disease and it’s not being dismissed out of hand in the same way as it was along with conditions like chronic fatigue syndrome and fibromyalgia.  Consequently, there are now post-COVID Clinics being opened around the country.

 

If you or someone you know is a long hauler, consider the following:

• Keep a health notebook: This can help you monitor trends, keep track of what you and your provider have discussed, and by taking it with you to medical appointments, you can help your provider by reminding them of things that may not be in your medical chart.  Download My Health Notebook from Johns Hopkins for free

 

• Maintain healthy habits by:

-       Eating whole foods-at least five servings of fruits and vegetables daily;

-       Reducing sugar & caffeine in your diet;

-       Limiting alcohol to a glass of wine daily if allowed with current medications;

-    Regular exercise (consider yoga, Tai Chi and Qigong);

-       Getting sufficient sleep

 

• Keep medical appointments: Request telemedicine visits if it will make things easier for you. Use the following sites that have been designed for those dealing with Covid. 

  DecisionTools for the time of Covid

Virtual appointments and medical visits during the Covid Pandemic: Lots of good tips to have a good visit via a telemedicine appointment.  

 

• Join a support group to help yourself and so you can help others. Below are on-line options.

Long Haul COVIDFighters Round 2 (30 Days +): Private facebook group for folks recovering from Covid who’ve been ill for 30 days or more. 

Survivor Corps 

Survivor Corps Facebook page 

Body Politic Covid 19 Support Group

 

Doing an online search with the terms "Covid"  "Support Group" and the name of your state, town or city can help you find local help and resources

 

• Share your data: This can shorten the path to new treatments. Patients Like Me, the world’s largest personalized health network and has published more than 100 research studies, has started a new page for people with Covid. 

 

Long Haul COVID Fighters - Medical & Scientific Collaboration This closed group is a place where members of the medical and scientific communities may reach out to Long Haulers to participate in polls, surveys, research, and ask questions about long COVID recoveries. All posts are subject to Admin approval. Private Facebook group

 

• Use an advocate to help you navigate the medical system and to support you.

 

• Recognize you are in charge of your health care and act accordingly

 

• Identify resources in your community that can help you get what you need

 

• Develop and maintain good relationships with your health providers