Doctors who study the condition explain how to get diagnosed with long COVID and have your symptoms treated seriously.
Although many people recover, others have symptoms that last for months or years.
Some might not have long COVID on their checklist of conditions to consider.
Even when doctorsdosuspect long COVID, they may not know what treatments can help with symptoms.
Yet fighting for a diagnosis is still worth the effort.
We desperately need more clinical trials and testing of various interventions, Dr. Kaufman says.
co-director of the Johns Hopkins Post-Acute COVID-19 Team and assistant professor of physical medicine and rehabilitation
Ready to advocate for yourself?
Its usually triggered by a group of disorders known aspostural orthostatic tachycardia syndrome(POTS).
You may actually have POTS and not even know it.
Very often, the patient will say, Im fine when I stand up.
And then we look at the numbers, and theyre not fine, he says.
Thats why he suggests all patients do the NASA lean test before visiting their doctor.
If you experience more visible symptomssuch as rashes or hivestake a picture.
It makes it a little harder to ignore, Dr. Kaufman says.
If they refer out, ask them where, then verify if its covered by your insurance.
co-director of the Johns Hopkins Post-Acute COVID-19 Team and assistant professor of physical medicine and rehabilitation
It could save you some time, Dr. Curtin says.
That makes sense, becauseroughly4half5of people with long COVID qualify for an ME/CFS diagnosis.
Its Amazing How Its All Connected.
Just know that wait times at any of these clinics can be longoften between six to 12 months.
Theres definitely not enough education for medical providers about long COVID, says Dr. Azola.
But: By and large, doctors are pretty receptive.
Its really frustrating for patients, says Dr. Azola.
Its medical trauma when their very real symptoms are dismissed based on unrevealing testing.
So if you dont feel right, trust your instincts.
Its not that nothing is wrong.
Online long COVID communities can offer real support and advice.
Sometimes its a very supportive environment, just to kind of help patients get through symptoms.
Check outSolve ME/CFS, theMassachusetts ME/CFS Association, theLong Hauler Advocacy Project, andLong COVID Physio.
Or Google your state + COVID for local groups.
The next phase of long COVID research will involve finding treatments that address specific symptoms and causes.
Its not a one-size-fits-all solution, she says.
Current treatments are individualized based on your symptoms, says Dr. Azola.
Pollack remains optimistic that we can improve care for long COVID patientsif we put our collective energy into it.
I dont think people are sitting around saying how could we possibly treat this?
Many potential therapeutics have been identified.
Its a matter of researching them.
reviewed by Jennifer Gilbert, MD, MPH
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