Preparing for Post-Covid Care at Mayo Clinic: What do I need to know?

Posted by Steve Dykema @sdykema, Aug 22, 2022

Good afternoon,
I am brand new to Mayo Connect and have an upcoming visit planned to Mayo Clinic for Post-Covid Syndrome and have been experiencing a myriad of ongoing symptoms including a sampling (but not limited to) the following: fatigue, breathlessness and palpitations, constant tightness in my chest, brain fog / cognitive deficit, difficulty concentrating, rapid heart rate, random drops in blood pressure throughout day, low heart rate at night, autonomic / peripheral (small fiber) neuropathy in left arm, chest, upper abdominal, and scapular areas including burning, tingling, & stabbing sensations, loss of sense of taste and smell, and muscle spasms and twitches throughout left side of chest, arm, and upper back (worse at night), and disrupted sleep pattern. I was diagnosed with Covid in November of 2020, was in really good health prior to contracting it, and have not been the same since. Heading into my upcoming appointment, I'm really looking for any thoughts and feedback from others who have had similar symptoms, experienced helpful treatment and healing, and/or been through the program for central sensitization/post-Covid syndrome.
Thanks in advance for any discussion!

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.


Hi Steve @sdykema, I have used a daily pain log and dosage when I was tapering of prednisone for polymyalgia rheumatica. I did it the old fashioned way with a small notepad but I do think it would have been "cleaner" if I had put it into a spreadsheet. Here's a site that you might find helpful.

-- Symptom Tracker (Google Forms + Google Sheets):

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Thanks, John, appreciate you sending over the link!


Hi Steve,
I attended Mayo in Rochester for the Post Covid Care Clinic and am heading I to week 11 of the Post Covid Care Program! Mayo was THE turning point for me. I am now in month 11 of longhaul covid. Prior to going to Mayo, I saw the video on central sensitization syndrome someone else posted in this discussion and it also resonated deeply with me. Once I got to Mayo and went through the week of testing and was told by my doctor that central sensitization syndrome is my diagnosis and he was recommending me for the virtual program, I knew help had arrived. The first day I arrived I felt relief simply because of the support aspect of being at Mayo. It is truly incredible. I felt a weight lifted off my shoulders because it was clear to me I was finally going to get help.
At my first appointment with my Mayo doctor, being told that what is happening to me is real and that he was going to help me was massive after all the months of struggle.

Having answers and a path forward is what Mayo provided me and I am so very happy I made the trip to Mayo. Having the central sensitization syndrome diagnosis, the Mayo education, the virtual wellness coach, and virtual nurse visits helped me find hope again!

My doctor here at home has been very supportive and engaged since I returned from Mayo and has used the info from my experience to provide more info to the providers in her practice. She feels it can help her many Post covid patients here in Huntsville. This has been an added gift to know others may be helped!

One tip as a longhaul covid patient is that I would stay at one of the hotels closest to Mayo if I went again. Because of the variety of symptoms to include cognitive symptoms I had, it would have been so much easier to navigate and I believe I would have had less triggering of symptoms had I stayed much closer.

While there I noticed the Marriott amd Kahler grand had options to walk through a food court inside and right into Mayo. I would have stayed in one of those to be able to access food and coffee, have less time navigating (cognitive strain for me) and more time resting between appointments and that would have made my stay a little easier based on all my symptoms.

I also would have flown directly into Rochester, MN instead of taking a shuttle in from Minn. (approx 60 minutes in a van full of people). After the week of testing and navigating the situation, my symptoms were triggered pretty intensely so that on the shuttle on my way back to Minn. Airport I felt sick and almost didn't make it. The driver was kind enough to stop for me.

Being in spaces with lots of people, cross talk, noise etc has been one of my biggest symptoms triggers and I realized that had I flown directly into Rochester and also stayed at one of the close hotels to Mayo (and not shared a room with anyone) I probably wouldn't have had symptom triggers the way I did.

Please note there are quiet spaces and meditation spaces in Mayo. I discovered the one quiet room at the end of my trip. It is just off the lobby behind the info station down the hallway. For a longhaul covid patient having cognitive symptoms triggered by being public spaces this would have been great to have been going into all week. Also, Mayo has easily accessible lovely outdoor spaces to sit on a bench with a coffee and enjoy nature, which was necessary for me in between appointments!

I wish you all the best and congrats on going to Mayo!

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