COVID-19 Information: Santa Clara County and Bay Area, California

At this point, the only way to avoid getting long Covid or post-Covid condition(s) is to avoid getting Covid.

In other words: 

• get vaccinated,
• keep up with boosters, and
• mask in situations where it's likely that the virus can spread.

Although there is so very much that's still unknown, we're starting to piece together a picture of what SARS-CoV-2 can do in our bodies even after infection.  

Acknowledged symptoms of long Covid or post-Covid include:

General symptoms

• Tiredness or fatigue that interferes with daily life
• Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
• Fever

Respiratory and heart symptoms

• Difficulty breathing or shortness of breath
• Cough
• Chest pain
• Fast-beating or pounding heart (also known as heart palpitations or tachycardia)
• Blood clots and blood vessel (vascular) issues, including a blood clot that travels to the lungs (pulmonary embolism)

Neurological symptoms

• Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
• Headache
• Sleep problems
• Dizziness when you stand up (lightheadedness)
• Pins-and-needles feelings
• Change in smell or taste
• Depression or anxiety

Digestive symptoms

• Diarrhea
• Stomach pain

Other symptoms

• Joint or muscle pain
• Rash
• Changes in menstrual cycles
• Sudden onset of a new disease (diabetes, lupus, Epstein-Barr)

It's not clear whether the damage is done by over-active autoimmune systems and/or by weakened circulatory systems, or whether residual infections can remain in our tissues to resurface later, or all of the above - or by some other mechanism not yet discovered.

It is also possible that the conditions currently grouped under the terms "long Covid", "Covid long-haulers", or "post-COVID" follow similar but different  paths. In some people, symptoms of the initial COVID infection persist even after they no longer test positive for the disease. A noticeable number of people in that situation find that their symptoms ease or disappear, some time later. Other people report that unexpected new symptoms appear, often 4 months to a year after the initial infection has passed. While the current thinking is that severity of long Covid might correlate with more severe initial infections, other cases suggest that post-Covid symptoms can appear after an asymptomatic infection.

(COVID isn't the only viral infection that can have long-term effects. According to Survivor Corps,  "Long COVID has been likened to other post-viral conditions such as myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), dysautonomia or postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), Multisystem Inflammatory Syndrome in Children (MIS-C) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS)." Post-polio syndrome, too. There are some similarities between these syndromes; and hopes that discoveries in one may illuminate another.)

If you suspect you're dealing with long Covid or post-Covid, what next?

First, collect details on your experience. When did the active Covid infection start, when did you test positive and negative, and what were the symptoms then? Which symptoms appeared later, and when? Select your most important issues now (sometimes referred to as “chief complaints”) and write them down. How often do those occur, and does anything make them worse? How do those symptoms affect activities of daily living, work, school, other commitments? Another suggestion is to try to describe examples of your best and worst days. Keep a symptoms log, like the one linked below, will make it easier to get a clear diagnosis.

Second, make an appointment with your health care team. They will need to review your medical history, and perhaps also order additional tests, to rule out other possible causes. If they don't have ready access to your medical records, be sure to share details of any past health conditions, medications currently taking, and any recent medical tests.

If you're experiencing brain fog or memory issues, it may be helpful to write down specific points and questions in advance. At the appointment, make sure all your questions are asked, and that you understand the answers. Focus on what steps are needed to get a clear diagnosis. Do take notes, and go over them with the health care team to be sure you've caught all the important details.

Checklists and tips like these can be very useful:

It can be difficult for health care professionals to keep up with the latest on long Covid / post-Covid. If relevant, you might find it useful to share these updates with your care team:

It can take a while to get a diagnosis, much less effective treatment. Since Covid is such a new disease, and discovering or treating long Covid requires different medical specialties to work together, clinics specializing in this are few, but growing (check the Survivor.com website to locate them.) Support groups can also be very useful sources of the latest news, as well as helping to cope day-to-day. The CDC and CA Dept. of Public Health websites listed below have links to several support groups and other resources for living with long Covid or post-Covid symptoms.