It has been 8 months (update: 2+ years) since graduating from the Mayo Clinic Pain Rehab Program, and I continue to be 85% recovered (depending on the day) from postural orthostatic tachycardia syndrome (POTS) and chronic fatigue syndrome (CFS). I never would have imagined that my health could make such a dramatic improvement, but it has been real and lasting. I want to share some of the key foundations of recovery, and provide more information about the principles that I learned at Mayo’s program for others who are on the journey with me. I’m not a medical professional, and the purpose of this article is to share my experience and give peer guidance to others who don’t have the chance to attend a similar program. Take with a grain of salt!

Let’s jump in!

1. Exercise

This was a non-negotiable, regardless of how miserable I felt on any given day. I started with just a few minutes on the treadmill, and each day increased it by one minute, again, no matter how I was feeling. In addition to gradually increasing my walking stamina, I also did strength training 5 days a week. This included leg, core, and balance exercises. Even though the first week was extremely tough, my body caught up. By the third week I was able to walk TWENTY TWO minutes straight, and even do a whole flight of stairs without taking a break! I have never considered myself someone who enjoys physical activity, but getting to experience the RADICAL change in confidence, strength, and ability, I have made it a priority in my life. And I KNOW. You’ve probably already tried to exercise, and I KNOW, it made your symptoms worse and you didn’t like it (or it felt impossible to actually stick with). But I am here to say that it matters. For more encouragement and information, read my article here that talks more about the details of what physical therapy looked like at Mayo.

2. Breathing

The doctors at Mayo shared with us that diaphragmatic breathing is currently the fastest way that research has shown to engage the parasympathetic nervous system and reduce sympathetic over-activation. In other words, it calms down the nervous system that is running haywire in those with POTS. They taught us that thirty minutes of diaphragmatic breathing a day is one of the best indicators of long-term recovery. Eight months later, I still incorporate breathing into my daily routine. With practice, I’m now able to bring my heart rate down by 20-30 beats within 3-5 breaths. This is an extremely helpful tool that I use after making an abrupt posture change, after exerting myself, or when I’m feeling stressed out. (Now for a quick guide: place one hand on your chest, and one on your belly. Breathe in, expanding your belly and watching your hand rise with the breath. The hand on your chest should not move, and your shoulders should stay loose and relaxed. Try to make each inhale + exhale last for 10-15 seconds. Do for 10 minutes, and repeat three times per day). Get more info from the pros here.

3. Function Through Symptoms

As intense as it sounds, there were only 4 reasons that we were permitted to skip class, and they included excessive bleeding, protruding bone, fever over 101, and being suicidal. If our symptoms did not fall in any of these categories, we were expected to show up and participate. They were insistent that even if we passed out or threw up, we were expected to use the skills we had learned to manage the moment (like diaphragmatic breathing and getting grounded), collect ourselves, and keep going. I was grateful for the medical supervision while attempting to implement this change, but even in the time since the program, I am so grateful that I get to live by this new standard. My symptoms do not get to define my plans, my job, or my participation in everyday tasks. And yes. I know how offended this one can make you feel, and yes, there are certain limitations. But for those of us who deal with fluctuating symptoms and often choose to be on the safe side by skipping things or limiting participation, this one can be incredibly helpful.

4. No “Pain Behaviors”

Essentially a “Pain behavior” is anything that shows other people (or yourself) that you are managing a medical condition. Thinking about, talking about, and showing signs that you are sick reinforces the limitations and expands the neural pathways that are dedicated to your illness. Especially due to the fact that POTS is a condition that is characterized by a high level of fight-or-flight response and internal hypervigilance, the more we can shift our focus away from constant body-scanning and symptom anxiety, the better. The more we can engage in healthy and “normal” human behavior, the more our nervous systems will trust that it is safe to come down to a regulated baseline. This means limiting who you share details about your symptoms with (for example, to your doctor), reducing the use of mobility aids as you continue developing strength, and not taking naps.

5. Make a Schedule

For the weekends, we each made a schedule the outlined our Saturday and Sunday by the half hour. It seems a little overkill, but seriously, when I am struggling with difficult days, I STILL print out my little schedule and fill it in with the activities I need to do to keep me on track. I like to start by putting in my morning and night routines, and then filling it in with mealtimes, diaphragmatic breathing, exercise, self-care (like showering), productivity, and leisure. If the day feels hard to manage, I might add extra breathing. If I’m feeling anxious energy, I might move up my exercise routine. The important thing is that we stay moving and functioning throughout the whole day, even if that means scheduling lower energy activities such as reading a book or chatting with a friend on the phone to moderate our energy output.

5. Eat Food!

Eating food in the program meant 3 meals and 2 snacks each day. For those who have trouble eating big meals, this can be a helpful routine to ensure enough calories and nutrients to fuel the recovery efforts. Personally, I had been rather underweight due to reduced appetite, and I noticed that gaining weight (especially in gaining muscle) also helped my recovery.

6. Sleep

This means 8.5 to 10.5 hours of sleep, and going to bed and waking up at the same time each day. On the weekends they permitted a 1 hour buffer (so you could stay up a bit late or sleep in a tad) but the research is clear that consistent sleep is a really important part of recovering from chronic illness. This will also ensure that you’re getting enough sleep to rest and recover each night and reducing the need for naps during the day.

7. Socialize

This means maintaining consistent interactions with coworkers and friends, or getting involved in a local group, club, or library. Isolation is a common (and harmful) result of navigating life with symptoms, and so it’s important that we choose to engage with other people and build healthy relationships.

Overall Lifestyle Changes

In addition to creating new habits we have discussed, I have also reevaluated my previous lifestyle changes.

I DO still take Midodrine (10mg, 3x/day), I heavily salt my food/water, I wear compression and I drink 80-100 oz water per day.

I NO LONGER use mobility aids (cane, wheelchair, shower chair), my disability parking tag, or specialized electrolytes, nor do I monitor my heart rate or blood pressure (which means no fitbit, no pulseOx, and no blood pressure cuff). I was able to taper my use of these things while at the program using a gradual plan that mitigated the anxiety of the loss while still making the changes. It felt frustrating and scary to reduce my use of these things that I had clung to so tightly, but the more that I focused on strength and building independence, the more I was able to successfully navigate life without them.

Conclusion

Some of these things might be expected, others might be surprising. I’ll admit that I could not have implemented the changes necessary without the strict schedule and high level of accountability that I received in the Mayo Clinic Pain Rehab Program. Even the idea of functioning THROUGH symptoms felt impossible and laughable. I expected myself to crash HARD, and to some degree, I did. But the more I pressed onward, the more my body adapted. Now I am able to say “yes” to nearly anything my friends or family invite me to, even if it’s hiking on a hot day, going to a 3 hour swing dance, or exploring a new city. POTS is now just a condition that I have, not a lifestyle of illness that defines me and my abilities.

If you have questions or thoughts you’d like to share, don’t hesitate to contact me using the form in the upper menu. I’d love to hear about your experience with POTS recovery.