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

@sdykema, welcome. You will be in good hands at Mayo Clinic's post Covid care clinic. I invite you to browse the topics in the Post-COVID Recovery group to find discussions related to the symptoms you have.

To help you prepare for your upcoming visit to Mayo, allow me to tag members who have been to the Post-COVID and Central Sensitization Rehab program like @ldropps @rwinney @cavera @remnant1 @baseballmama @liz58 @jennifergillan03 @leen @remnant1 @jill1972 @mbcarl and others.

Here are few discussions to get you started:
- How did a Long Hauler COVID Clinic help you? https://connect.mayoclinic.org/discussion/waited-6-months-to-go-to-long-hauler-covid-clinic-and-very-disappointe/
- Any tips to help recovery for a COVID Long-Hauler? https://connect.mayoclinic.org/discussion/long-hauler/
- Mayo Educational Visit with Post COVID Clinic https://connect.mayoclinic.org/discussion/mayo-educational-visit-with-post-covid-clinic/
- Is this a COVID crash? Any suggestions on how to stop a crash? https://connect.mayoclinic.org/discussion/the-covid-crash/

May I ask which Mayo Clinic location you'll be going to? Have you been to Mayo before?

Hi @sdykema. Your certainly not alone in the myriad of symptoms club. I join you with a long laundry list of crazy, yes I'll call them crazy, symptoms that can be non-stop, all over the map, stressful, annoying,
painful and scary at times. I'm sorry you suffer from Post-Covid Syndrome AKA Central Sensitization Syndrome, but so happy that you have an upcoming visit planned with Mayo. Will you be applying to be accepted at the clinic, or actually attending?

I have neurological and sensory dysfunctions from CSS, but not Covid related and have been to Mayo Clinic's Pain Rehabilitation (PRC) Center in Jacksonville, FL for help. If my experience can help you in any way please pick my brain. How do you feel about your upcoming appointment? Are you nervous or apprehensive at all?

Thank you, @colleenyoung, for all of the additional information! I'm scheduled for Rochester in mid-September and will be attending for the first time. I'd welcome any additional feedback from anyone else included on the thread. Thanks again!

Hi Rachel, thanks for the feedback! I'm coming in for additional assessment and to hopefully determine the most appropriate treatment plan moving forward. Not feeling nervous at the moment, very eager to figure things out, discover some answers, and move forward. I'd welcome speaking with you further about your experience - thanks for offering! Steve

@sdykema Hi Steve - Wow, great news that you will soon be headed to Mayo and come up with a game plan! It's definitely something to look forward to and feel positive about given all you've been through.

I used to say that I just wanted a game plan, teach me how to live with what I've got. When I first came to Connect, I was scared about my physical changes and how they were recreating life in a way I didn't want, like loss of job. I was desperate for fixes and solutions about migraines, eye conditions and small fiber neuropathy, etc... I had a plethora of symptoms, beyond what my doctors diagnosed or were able to explain, which effected my central nervous system and peripheral input sensory system. Odd things that did not make sense until I began to understand central sensitization. After a lot of research, I found the attached video on Central Sensitization Syndrome by Dr. Sletten of the Mayo Clinic Pain Rehab Center in FL. He clearly stated what I was experiencing and offered a game plan! Perhaps his video will help you understand more about CSS and how it affects you.

Have a watch...

Post-Covid patients are experiencing central sensitization and have no understanding of why or how to manage. Luckily Mayo offers a post-Covid clinic for long-haulers to help guide patients and make sense of things. Here's a discussion you may want to look through:

- https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/

In addition, all 3 Mayo's offer a Pain Rehabilitation Center like the one Dr. Sletten mentions in his video. I graduated the PRC 3-week program in FL and worked with Dr. Sletten. Here is an overview of the PRC:

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

PRC was an amazing program and helped me become a new person. I think you'll find similar treatment plans and ideas at your assessment in September. If you are curious about CSS and my PRC journey, here are some discussions you may want to peruse through:

- https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/

- https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/

Well, Steve, I threw a lot your way, sorry if it was overwhelming. Take your time and be prepared by being your best advocate. September is around the corner! Keep hope alive and think positive, my friend. What questions might you have for me, or other members?

Thanks, Rachel! I greatly appreciate it!! Already watched the video and it perfectly summarizes what I've been the experiencing the past 21 (with growing severity of symptoms over the past year) months. I'll dive into the other discussion threads over the next couple of days as I'm certain they will be equally as helpful. Have you run across any useful symptom trackers, possibly in excel or word formats that you could possibly point me to?
Thanks again for all of you feedback and direction,
Steve

Steve, you may wish to also see some of the discussions in the Visiting Mayo Clinic group for tips on hotels, restaurants, getting around and more.

- Visiting Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Hey Steve @sdykema I'm so glad you appreciated the video and related to it. Wow, 21 months are making more sense for you. That makes me happy for you! I felt the same way when I watched. It's pretty wild that our body's can be scientifically broke down to make sense of symptoms and outcomes.

Sorry, I don't have any tech ideas for symptom tracking, but @johnbishop may hunt something down for you. Please, John. 😊 I was old school when I used to track symptoms. A good ole college ruled notebook did the job.

Since graduating pain rehab, symptom tracking and symptom talk is off the table for me as it's considered a:

"Pain Behavior"

Which you learned from the video, a pain behavior is anything you do, say or think that reminds you or someone that you're having pain.

It was like a slap across the face when I first got to rehab and had to work on omitting pain behaviors. It became habitual learned behavior and was difficult to break the cycle. The goal in doing this is to stop accessing pain path ways in the brain which keep reinforcing pain. The more pain is ignored, the better chance of recreating new path ways. Have you researched neuroplasticity?

Oops, got off track...
There certainly is importance in tracking symptoms, triggers and flares to present for diagnosis and treatment plans. It's helpful diagnostic communication. Let's see what John may come up with for you...

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): https://www.wingspanhealth.com/blog/symptom-tracker-google-form-google-sheets

Thank you, this is all such great information, and appreciate your sharing about the pain behaviors piece...that is the definitely the right approach to be taking with things!