My Second Trip to Mayo
What I learned No. 5
I returned to Mayo Clinic for my second visit at the end of June. This trip was for an evaluation by Integrative Medicine and Health, specifically the Fibromyalgia and Chronic Fatigue Clinic, for my chronic pain, musculoskeletal pain, and fatigue symptoms.
This Rochester visit was easier for multiple reasons:
First, in general, it was the second time, so there was familiarity.
We drove in a more comfortable car; the drive through the bumpy stretch was less impactful on my body.
We stayed at the Hilton. The Hilton is not under construction (like the Marriott last visit), and the number of visibly sick guests was lower.
On the morning of my appointments, there was no last-minute business office meeting scheduled.
I ate a full breakfast (at Benedict’s/highly recommend!) instead of eating a light meal in an underground hospital cafeteria surrounded by a large number of visibly sick people.
We walked outside to my appointments, which were located within the Dan Abraham Healthy Living Center. (Dan Abraham is the founder of Slim-Fast and received care from Mayo.)
The Living Center is a wellness center; it feels tranquil. In addition to the Fibromyalgia Clinic, it includes a workout facility, spa, Acupuncture & Massage office (with retail), and Orthopedics and Sports Medicine clinic.
A brief physical exam was conducted, with no diagnostic testing performed. (I am tired of diagnostic testing!)
Check-in (including answering another questionnaire) and three appointments (with two nurses and one physician) lasted just over three hours. The visit would have been shorter, but a tornado sighting caused a brief halt to operations. I was grateful for the water, juice, and graham crackers offered during the pause. While waiting for the tornado to pass, I snacked and read about the art at the Mayo Clinic.
All my appointments were scheduled for the same day. I felt more relaxed the second night because there was no drama, and no diagnostic testing was required overnight or the next day.
The hotel had an easy-to-access hot tub that helped relieve pain after the appointments and the following morning. I chatted with a lovely family of four both times. We talked about hotels, boutiques, restaurants, Iowa State, and raising two boys. Last week marked their 20th visit to Mayo.
The hotel offered a driver service (for $10) that we took advantage of the second night to go to dinner.
I do not have Fibromyalgia or Chronic Fatigue Syndrome. (A huge relief.) As suspected, due to Long COVID, I have developed Central Sensitization. This means that my central nervous system has become more sensitive to pain, as well as to light, sound, temperature, and other stimuli.
I left with a *lengthy and in depth* assessment of syndromic Long COVID, healing plans to consider, and resources. I read the 14 pages on the car ride home and then noted the first 13 recommendations that resonated with my multiple symptoms. The plans range from using an app for pacing to drinking electrolytes to pharmacologic management.
What's next? After completing another round of insurance waiver approvals, I will participate in the Mayo Post-COVID Education Program. It consists of two 4-hour virtual group sessions and a series of nurse and wellness coach 1:1 follow-ups weekly for 12 weeks. The support is in place to help patients set goals and work on various treatment plans. My physician emphasized that the best approach to this process is to listen to yourself, choose plans that feel right, and adjust when an option is not working. I also have a July appointment with my Mayo “Quarterback” physician scheduled.
We stopped in Oconomowoc on the way home; it was nice to be at the lake for the first time this season. I'm tired and have caught a cold (hopefully a brief one). Long COVID is a long journey that I'm tired of, frustrated and sad about, and at times scared about, too, but there's no option except to move forward! I am grateful for all the kindness and help received.