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

Posted by Steve Dykema @sdykema, Aug 22 4:51pm

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 group.

@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?

REPLY
@colleenyoung

@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?

Jump to this post

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?

REPLY
@colleenyoung

@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?

Jump to this post

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!

REPLY
@rwinney

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?

Jump to this post

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

REPLY
@sdykema

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

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@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?

REPLY

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

REPLY
@sdykema

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!

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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/

REPLY
@sdykema

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

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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…

REPLY

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

REPLY
@rwinney

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…

Jump to this post

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!

REPLY
@johnbishop

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

Jump to this post

Thanks, John, appreciate you sending over the link!

REPLY

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!

REPLY
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