How to effectively talk to your local provider about long COVID

Jul 1, 2022 | Greg Vanichkachorn | @drvan | Comments (5)

With so much still unknown about Post COVID Syndrome (PCS), finding treatment can be very challenging and frustrating for patients. Many providers have limited experience with this new condition. Specialized Post COVID Clinics have more demand than appointments available, long wait times and limited access.

 It's important that patients start care as soon as possible close to home with their local provider. At Mayo Clinic's COVID Activity Rehabilitation Program (CARP), we have seen that earlier treatment for PCS leads to better outcomes, like faster and more complete recovery. To help make your next trip to the local clinic successful, here are four tips to try.

Focus on individual symptoms, not PCS.

Many providers have not been trained on how to evaluate and treat PCS. Secondary to this, just mentioning “long haul covid” can result in fear and even stigma when it comes to medical care. That is why I recommend focusing your care on the treatment of your symptoms, rather than PCS. The unique part of treating PCS mainly involves the recommendations for low intensity activity with slow increases. Otherwise, the treatment of symptoms in PCS is the same as if someone never had COVID. For example, if you are experiencing headaches with PCS, providers should evaluate and treat the headaches like any other headache. Focusing your concerns on your symptoms, versus “I need help with long haul covid” will help minimize barriers and unintentional bias.

Prioritize your concerns.

PCS can result in many symptoms. Evaluating numerous symptoms safely and thoroughly takes a very long time. At Mayo Clinic, our Covid Activity Rehabilitation Program (CARP) appointments are 1 hour long. However, primary care providers do not have this time luxury, with visits often lasting 15 minutes at most. To get effective care in such a short time, I recommend tackling your symptoms in groups, based on importance to you. For example, if you have many symptoms, but fatigue, headaches, and troubles sleeping bother you the most, focus your discussion on these first. Of course, all your symptoms are important and should be addressed. To help set the stage for prioritized care, try saying the following to you provider:

“I am having quite a few symptoms after my COVID infection. I know we have limited time, so I wanted to start with the three symptoms that most concerning to me today.”

By following this strategy, you will have time within each visit to discuss evaluation and treatment effectively.

Create and share realistic treatment goals.

A question I almost always ask my patients is “what is your goal for treatment.” It may seem like a trick question, but it is very important to know what a patient’s expectations are for their care. For example, goals like “I don’t want to be tired anymore” or “I want to get rid of my headaches” is very vague. Everyone gets tired from time to time. Such nebulous objectives make seeing improvements very difficult. Instead, think of specific goals focused on function. Examples of good goals are “I want to be able to walk my dog for 1 mile” or “I’d like to get back to work full time.” And don’t forget to clearly share your goals with your provider. This will help you both develop a more specific and effective treatment plan.

Develop a partnership.

Patients will often say to me “I'm sorry, but I looked up a couple of things on the internet.” First, take it from me that you should never feel the need to apologize for being your own advocate. Dr. Google is a wonderful colleague of mine. Second, with so much left to be discovered about PCS, providers need all the help they can get. The patient-provider relationship is a two-way street, and I have found out about some interesting theories and treatments through my patients. So don’t be afraid to ask about a medication you may have heard about. Or that you read on the awesome Mayo Clinic blog that treatment for PCS symptoms is essentially the same as if someone never had COVID. Of course, providers can’t just order anything you ask for, but you will never know if a treatment is possible unless you ask.

Just as interviewing a patient is an art, so too is speaking to medical providers. With these tips, you can help eliminate unnecessary barriers to care and get your treatment started as soon as possible.

Read more about managing symptoms such as loss of smell or taste. Connect with other people like you and share your recovery tips and successes in the Post-COVID Recovery & COVID-19 support group.

Interested in more newsfeed posts like this? Go to the Post-COVID Recovery blog.

Have you read the recent research in by Dr Bruce Patterson of Incelldx indicating long COVID symptoms are vascular inflammation caused by the persistence of the SARS – COV –2 spike protein in white blood cells, and that CCR5 antagonists (like the HIV medication maraviroc; Selzentry) and statins have resulted in improvements for many patients by diagnosing the cause instead of just treating symptoms…. very interesting research and his team developed a clinically proven test for a long hauler index and treatment they have to coordinate with a patient’s PCP however getting a PCP to be on board can be frustrating…. more can be found on his website:


Very helpful! I’ve been doing infrared treatment for inflammation and circulatory improvement in combination with compression therapy. It beats prednisone! But if I ween myself the inflammation seems to return. Patience and persistence - thank you for sharing this information!!


I heard a research talk 3 months ago where they weee beginning to suspect that the 200 symptoms of PCS was forming subtype patterns that would require different treatment. For example I have fatigue joint pain and tinnitus and brain fog, but I do not have most of the other 200 symptoms including autonomic one (racing heart rate etc). Where is clinical treatment at for subtypes? Is Mayo providing specific treatments for different subtypes yet?


I also have many symptoms that flipped like a switch. I have severe pain, muscle and joint tears, compression fractures, severe spinal stenosis and spondylolisthesis, sleep disturbances, my body gets worn out and I black out. I fall all the time. My skin had awful large scar areas. SICCA syndrome with fatigue so bad I can’t get out of bed. Drs think I want pills. They don’t want to continue tests or send me to the Mayo Clinic. I have been yelled at and said idk what else to do do you. One dr finally cried with me when she saw me. I have skin mottling, scars, dysautonomia and nobody cares. She said I had been done a disservice. They are not let me make an appointment with her because my biopsy was negative for SFN. I have had COVID 5 times and I can get no help. It’s like they want to see you in pain or they leave it up to another specialist. I practiced rural health family practice medicine as a CRNP. I need daily steroids and medication strong enough to crush this pain then back down. Is anyone left out there that cares???? Just wondering. A med student laughed at me when I told her I had daily pain and had even tried CBD. I want to sit down and have school all the time. One Dr told me he could see my epiglottis working fine.


Very helpful! I’ve been doing infrared treatment for inflammation and circulatory improvement in combination with compression therapy. It beats prednisone! But if I ween myself the inflammation seems to return. Patience and persistence - thank you for sharing this information!!

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