Prior to POTS, I was an avid runner and loved it. I ran cross-country and track throughout high school and college. Post-college, I continued to train and would do a race every now and then. Right before POTS hit me like a ton of bricks, I started thinking about racing again and was trying to get in 1-mile road race condition. I didn’t try running again until a few years later during the Modified Levine Protocol. It felt horrible, so I stopped and figured my running days were over.

Last year (2021), I had the itch to try to run again. This is cheesy, but it struck me after watching the Olympics. It reminded me of the joy that running used to bring me. So, I thought, why not give it a whirl again? It may not work out long-term, and that is okay. I made peace with the fact that I was done running a long time ago, so this is all just a bonus for me.

Note- For those not familiar with my story, when I was first diagnosed, I could tolerate 3 minutes of extremely light exercise. It has taken nearly 4 years of gradual building, recovery, treatment, etc. to get to this point. This is a big effing deal. That being said, this is my unique journey, take it for what it is.

The Process

First, I built a foundation by working up to 3 miles of walking every day for several months. That was smart. Then, I started running 10-15 minutes at a time and threw in some fast intervals. That was NOT smart. If you’re a healthy high-schooler, sure, that may work. But, I’ve come to understand that my mid-thirties POTS body requires an extremely gradual approach with tons of TLC.

Eventually, I worked with a PT that helped me get on a better path. You can read about my experience with that here. I currently do PT exercises three times per week (just dropped down from daily) using a combo of what I learned at the PT recently, things I have taken away from previous PT stints, new things I learn from podcasts, articles, books, etc., and sometimes things that I make up. I also strategically lift weights three times per week and do plyometrics once per week. Collectively, this is all very “extra”, but through these last several months of trial and error, I have learned that it is what my body needs to get it able to run healthily.

As for the actual running, I used a walk/jog approach for a while, starting with three sets of one minute of running. I increased the time when it felt right. I eventually switched to two longer sets of walk/run, and then to just running when I was around 12 minutes total. After Covid (about 6 weeks off), I started with 3 minutes of running and just added one minute each session. However, I would occasionally plateau at certain levels for a couple sessions when it felt prudent.

Where I’m at now

As I mentioned, it’s been a long process rife with minor injuries and illnesses (you can read about my experience with Covid here). I have been working on this “running project” since September 2021, and as of now (May 2022) I can successfully run 20 minutes three times per week.

I recently started incorporating speed work. On one run each week I started doing a couple “striders”, which are repeats of roughly 100m below a sprint pace. Currently, I am doing low volume interval workouts like 3×1 minute with 1 minute rest between followed by 2×30 second sprints.

I still walk every day, but I walk less on the days that I run.

I am thrilled by where I am at. Sure, it’s taken a long time with a lot of ups and downs, but if you would have told me back in 2017/2018 that I was running again, I wouldn’t have believed you.

Future Plans

I plan to continue to increase the time spent running, how many days I run, and the volume of the speed workouts (as my body permits). It would be awesome to race middle distances again some day, so I’d like to get to the point of tolerating the workload necessary for that. However, I don’t know if that is a realistic goal. I’ll just keep building and see if I get there.

Words of Wisdom

• You must be strong to run. I recommend lifting weights and having a repertoire of PT accessory exercises that you mix with it.
• See a PT if you’re having trouble.
• Add in plyometrics when you’re ready. It will train your tissues be able to handle the loads of running more. Start small (one set, 6-10 reps, simple exercises, once per week). Plyometrics are a power exercise, so they require full rest to get the most out of them. Insanity-style HIIT workouts and bootcamp workouts are NOT going to achieve the same thing.
• Start with ridiculously low volume and advance ridiculously slowly.
• Use massage tools like a foam roller or Yoga Tune-Up ball.
• Strengthen and mobilize your feet. I do this by wearing minimalist/barefoot shoes for walking and daily life, Yoga Tune-Up ball, Happy Feet socks in the evening, and some exercises I’ve picked up from various sources.
• Be mobile in every day life, not just in running. It’s jarring on the body to go from a sedentary lifestyle to running.
• Incorporate an extensive warm-up including drills to improve form.

If you have any questions or want more details about these points, feel free to comment or send me an e-mail.

How Running Has Impacted my POTS

This is the most exciting part of running again- my POTS improve the more I run!

My energy levels and pre-syncope have improved since I began running. I am super psyched about it. I also saw a correlation between doing longer walks/faster walks and how I felt. So, do not be dismayed if you cannot run. There’s a lot of benefit you can reap before getting to the point of running.

If you have been following this blog for a while you may remember that I was pretty indifferent on long cardio and interval training after doing the Modified Levine Protocol. I thought the protocol was helpful for me, but felt like the volume was too high and it burned me out. That was true for where I was at that point. However, now, I can handle more and am continuing to reap the benefits of doing increasing loads/volume/intensity as tolerated.

A few years ago, I read an article about how jump training improves POTS due to its effect on the muscular pump to return blood back upwards from the lower legs. Unfortunately, I cannot find that article anymore to link it. If you find it, please let me know! This study has been on my mind as I experience an improvement in POTS from running and plyometrics. Obviously plyometrics is jump training, but running also checks this box. Running is essentially a series of jumps. If I find that I am no longer able to run, I will definitely find ways to incorporate jump training to continue reaping these benefits. In addition to plyometrics, I would try jump roping. Jump roping produces less impact than running, but still has that rebounding off the ground effect that is beneficial.

To read more about the benefits of exercise in general, you can check out my article on Exercise and POTS.

Do you run with POTS or a different chronic illness? How has it impacted your health and life?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

One of the things on my “to-do” list for last year was manual physical therapy. In early October, I began seeing a physical therapist that uses both manual and traditional physical therapy modalities.

Why I sought out PT

Ever since I became ill with POTS and ME/CFS, I have struggled to regain my core/hip flexor strength and have been prone to patellofemoral pain and random issues like a nerve impingement. In addition to those chronic issues, I recently strained a calf muscle and it has been extremely slow to heal. I had been chomping at the bit to start running again (which is super exciting), but these issues were a hindrance. I was also hoping to improve overall function and energy/efficiency. Dr. Peter Rowe recommends manual PT to his patients for this reason.

Side note, the way my calf strain occurred is hilarious. I was goofing around and running with my kids, when suddenly my younger son ran right in front of me. I went from full stride to a superhero maneuver in a split second to avoid plowing into him. My calf was like, “Who do you think you are?” and got promptly injured.

What this PT is like

In the initial hour-long appointment, I was evaluated for strength and mobility in the areas of concern. Then, the PT did manual work on tight areas. Manual work is very similar to sports massage or orthopedic bodywork. Finally, I was given a set of exercises and stretches to do twice per day at home. It took roughly 30 minutes for me to complete each exercise/stretch session. In addition to the exercises and stretches, I use massage tools like a mini foam roller and Yoga Tune-Up ball to maintain the manual work.

Follow-up sessions lasted about 30 minutes. They included manual work and review of the exercises. The PT would watch me do the exercises to check form and to determine when I was ready to move to the next progression. She would also add in new exercises or stretches as she saw fit.

Each office, practitioner, and patient is different, but I went in for appointments roughly every two weeks. I felt prepared to do the exercises on my own, I have the necessary equipment at home, and can replicate most of the manual work myself with tools, so this schedule worked well for me.

Pros

Having to do the exercises and stretches twice per day has improved my strength where I previously felt “stuck”. I have done many of these exercises before, but doing them twice per day rather than twice per week made a difference. The exercises I had to start with were pretty remedial, so it was okay to do them this often. It’s important to note that as you progress to more challenging moves and loads, you do not have to do the exercises as often.

It is helpful to be guided through a strength progression by a professional. Not only does in ensure proper form, but then the exercises are tailored to meet you where you are at. For example, before PT I was already doing single leg Romanian deadlifts. First of all, I was doing them incorrectly by opening my hip and second, I probably wasn’t ready for them without first establishing more basic movements.

The manual work helps to accelerate the results. I had been dealing with a consistent nerve pain starting in my hip and ending with a hot feeling at the top of my foot whenever I would flex my hip joint for almost two months. Since manual PT and my at-home maintenance, it is a rare occurrence.

Most insurance companies cover this type of work, so it can be relatively affordable if you choose a provider in your network. It is also something that you don’t have to go to very frequently if you feel comfortable replicating things at home. Even if you don’t feel comfortable with it right away, it is something that you can work towards so that PT becomes less of a burden.

Cons

Because insurance is involved in this type of PT, it is restricting. So, I had to narrow the focus of the areas I wanted addressed. Also, insurance will only cover it for a certain number of sessions/period of time.

Due to having to narrow the focus to a limited area, this work isn’t conducive to the manual physical therapy work needed to boost overall energy (the type Dr. Peter Rowe discusses). For that, you would most likely need to find a provider who doesn’t submit claims to insurance. The downside of that is it becomes very costly. I don’t think I will pursue that type of treatment anymore for that reason in addition to the fact that I don’t want to have frequent appointments at this time.

The twice-per-day sessions are exhausting. Now, I love exercising, and motivation isn’t an issue. However, I found that my muscles did not recover as I expected. I had to take that into consideration and adjust accordingly. Some days I would take off completely, some days do less sets in the evening, etc. After about six weeks when the movements progressed to be more difficult, I switched to once per day. Then, once I was doing more advanced progressions, it evolved to a few times per week.

Update and Final Thoughts

After several sessions of PT, I felt like I was on a good trajectory and decided with my PT to discontinue sessions. For the most part, I have been doing fairly well with my areas of concern. However, running has still been a finicky thing. It is taking a lot of trial and error for me to successfully return to running. I’ll discuss this in a future post.

I think PT would be a great idea for people returning to more movement if they find themselves injury prone. In particular, this would be useful for people that were bed-bound or sedentary. Muscular imbalances can occur during that time and sometimes it takes a professional to get things going in the right direction. My advice would be to make sure you take it extra slow in progressing to more movement, especially if you want to return to a sport.

Have you seen a manual or traditional physical therapist? How has it impacted your health?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

In the Month 8 of the Modified Levine Protocol post, I mentioned how I thought I would be exercising. Now that some time has passed, I thought I would update you on my post-Levine exercise regimen and how it is going.

Weekly schedule

• Monday- Yoga
• Tuesday- Cardio and yoga
• Wednesday- Yoga
• Thursday- Cardio and yoga
• Friday- Yoga
• Saturday- Cardio and yoga
• Sunday- Yoga or rest

What I do

Yoga

• I have been super into yoga lately, so I’m rolling with that and using it to strength train. So far, I think it is doing an excellent job of challenging and improving my strength.
• I am currently on the Thrive program in My Yoga Pal by Lesley Fightmaster. Each of these workouts is around 20-25 minutes. Prior to Thrive, I completed the Align and Beginner programs. They have all been excellent.
• Note- Yoga is NOT going to be ideal for all POTSies. I used to not be able to do yoga. In order for me to tolerate it, I have to be in prime cardiac condition (achieved through the modified Levine protocol). And, that’s with having a milder brand of POTS to begin with. So, be careful if you give it a whirl! There are plenty of other gentle and effective strength training methods that may work better for you, and that’s perfectly okay. Prior to and through part of the modified Levine protocol I used P.volve to strength train and I would still recommend that.

Cardio

I basically do what feels right on a given cardio day. Although, I do try get in one interval/intense workout each week. I bounce around a lot to keep things fresh. Whenever I start to dread a particular workout, I know it’s time to switch it up. Here are some examples of the cardio workouts I do:

• Walking outdoors
• Jump roping intervals (I haven’t done this in a couple weeks because I got bored)
• Cardio videos from YouTube. I am currently digging Keaira LeShae videos. She is hilarious and fun. One of my favorites is her 3 mile walk video. She also has some interval or tabata workouts that are more intense like this one.
• Fitness Marshall dance cardio
• P90X3 workouts

I usually spend around 30 minutes on indoor cardio videos, but will go longer (aiming for an hour) for outdoor walks.

How I am feeling

Much better. I function around 65-70% of normal (except for when I get sick or something like that). My energy has come up a bit since I finished the Modified Levine Protocol just as I suspected and I no longer feel burned out.

What does you post-Levine exercise regimen look like?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

Month 8 and the whole Modified Levine Protocol is complete!

Note: I have updated this two weeks after I published it to include how I am doing after easing up on exercise.

What month 8 is like

Month 8 is very similar to month 7, with a little added intensity. MSS workouts get up to 45 minutes. Interval workouts increase in length and number of sets until it gets to 10 x 2 minutes. Most of the month has no rest days. All of the base pace workouts are 45-60 minutes. There are two strength training days per week.

Notes

• Warm-ups: I have been continuing to do the core workout from Lesley Fightmaster every day this month. Holy smokes is my core stronger! I highly recommend this routine.
• Cool-downs: I have been doing stretches and mobility exercises that I learned through the Beyond Flexibility program.
• MSS: I tried a few new workouts this month. None of them worked well for MSS.
• Base pace: I either walked outside, did dance cardio with The Fitness Marshall, or did Walk at Home with Leslie Sansone. I’ve talked about The Fitness Marshall in the past and as I said before, love love love! However, if my boys are around, I don’t want a song like “Anaconda” to pop up. So, when they are around, I do the Walk With Leslie videos. They are super cheesy and repetitive, but they work well for base pace.

• Interval training: I continued to jump rope, which is perfect for this. When I do intervals, I rest for half of the time of the interval. For example, when doing 2 minute intervals, I rest for 1 minute in between intervals.
• Strength training: I continued making up my own routines that include a hodgepodge of things I’ve done in the past. I spend about 30 minutes on these workouts.
• Recovery sessions: I have been doing Fightmaster Yoga videos for recovery sessions.

How I’ve been feeling

I am a bit physically burned out from the protocol, so I cannot accurately gauge it from my ending point. So, I will instead use the figure from last time I gauged my functionality. Before I started the protocol, I was between 50-60% functionality, depending on the day. A one point during the protocol, I felt like I was at a solid 60-65%. So, the protocol improved my functioning to a modest degree. Aside from functionality, I have noticed other improvements that I will discuss below.

Two notes to consider as you read about the improvements I have experienced:

• I was already exercising 6 days per week for 30-40 minutes. If you are not exercising at all, you may have more dramatic results.
• I started Mestinon around the time when I started the protocol. Mestinon is effective for me, so some of my improvement is credited to that.

Going back to being physically burned out- I believe the volume of exercise in the final couple of months of this program is too high for me. There’s a small chance there is something else at play, but I’m pretty sure it is due to over-exercising.

As I go back to the exercise volume I am comfortable with, I have a lot of hope that I will see additional improvement in how I feel and function. You may ask, “Why did you finish the program?” Honestly, because I was so close to the end and I wanted to be able to say “I finished it”. The other part was because I like to give things a full effort before nay saying it. I would have doubted myself and my evaluation if I had stopped short.

Update: It has been two weeks since I finished the program. Since then, I have changed my workout regimen to what I detail below. I feel much better. I have experienced a gradual uptick in energy since I began listening to my body and would say I am around 65-70% functionality now and feel optimistic that I will experience continued improvement. I will keep you updated as things progress. Over the holiday weekend, I spent time with my family and was stunned by how I was able to keep up compared to other recent holidays. It must be harder for me to see this objectively in my daily life because the changes happen slowly to where I forget what I used to be like.

Pros and Cons of program overall

It seems like the Modified Levine Protocol helped my POTS symptoms more than the ME symptoms. That makes sense since it is a program specifically for POTS. Now, that’s a hard distinction to make and my evaluation may not even be entirely accurate. However, that is the best way I can explain it. The intense fatigue and crashes I would attribute to ME. The dizziness upon standing I would attribute to POTS. The “gassed” muscles and brain fog I would attribute to both POTS and ME. Overall, I have seen improvement in all symptoms throughout the course of the program, but the most dramatic changes have been in the POTS symptoms.

Pros

• Significantly less orthostatic intolerance (dizziness upon standing). Even when I go from a crouching position to standing, which was my hardest transition, I notice major improvement.
• Improved brain fog. It’s hard for me to perfectly sort out what exactly improved my brain fog over the last several months. However, it’s possible that some of this improvement is due to the Modified Levine Protocol.
• Energy crashes resolve quicker. It seems like I bounce back faster these days.
• Modest improvements in overall energy. I can do more in my daily life than I had been able to prior to the protocol. It’s not a dramatic change, but every little bit helps.
• Muscles feel less “gassed”. Mestinon and massage therapy are large factors in improving this is as well.
• Increased confidence. I am proud of my level of fitness and the fact that I completed the protocol.
• Fitness gains. This is pretty obvious, but I am stronger and in better cardio condition. I used to tolerate only 15 minutes of upright cardio and now I can do over 60 minutes without issue.
• Improved tolerance of positional changes in exercise. I can keep my hands above my head with less lightheadedness. I can also tolerate yoga again.

Cons

• The volume of exercise in the last couple of months is too much for me. Even when I was training for cross-country and track in college, I was a “low mileage” athlete. My muscles feel burned out right now.
• The improvement is NOT linear. This can be frustrating at times. It helps to anticipate this.
• Time commitment. The protocol is no joke. It takes an hour to an hour and a half most days.
• Energy commitment. Sometimes, after completing a workout, you will be spent for the rest of the day. That can be disheartening at times and it’s important to be prepared for that.
• Some cost involved. You will need some equipment or a gym membership, especially in the recumbent exercise phases.
• Some increases occur at too large of increments within a short span of time. This dramatic increase made the protocol harder on my body at times than it needed to be. If I were to design the program, I would adjust it to spread out the increases more incrementally.

Overall, I think the pros outweigh the cons because the cons are primarily things that can be dealt with if you know what to expect. I am better off from the protocol and believe I will be even better once I find my proper balance and amount of exercise.

Looking ahead

I am very excited about moving past the protocol and having more freedom in exercising. I believe what will work best for my body is a schedule of 3-4 cardio days per week, 2-3 strength training days per week, and one day off per week.

For cardio, I will have one long walk on the weekend (at least an hour), one jump roping interval day, and the third/fourth cardio day I will do what feels right that day and sounds enjoyable. For strength training, I plan to do yoga. If I feel like there are some gaps, I may add in supplemental exercises. For example, I would do a yoga workout, then a couple sets of pull-ups.

I plan to do yoga most days because I am really enjoying it right now. On cardio days, I will do a yoga afterwards. That helps me feel better after a hard workout. Lesley Fightmaster (whose videos I have done on YouTube) has a subscription program called My Yoga Pal that I’m going to try out. I have never taken a yoga class in person, so I look forward to having more guidance.

Other Modified Levine Protocol Posts

Modified Levine Protocol- Month 7

Modified Levine Protocol- Month 6

Modified Levine Protocol- Month 5

Modified Levine Protocol- Month 4

Modified Levine Protocol- Month 3

Modified Levine Protocol- Bonus Time

Modified Levine Protocol- Month 2

Modified Levine Protocol- Month 1 and Intro

Link to the Modified Levine Protocol Program

Modified Levine Protocol Program

Has anyone else completed the Modified Levine Protocol? What are your thoughts?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

Month 7 of the Modified Levine Protocol is complete. Only one more month to go!

What Month 7 is like

It’s hard. Everything ramps up, weeks 3 and 4 don’t have any rest days, and one of the weeks even has two interval sessions in it. Each week has 4-5 days of cardio and 2 strength training days. As in other months, the cardio days are either base pace, MSS, or interval training. You can check out older posts or the protocol itself for those guidelines.

Notes

• Warm-ups are a hodgepodge. Sometimes I do housework (2 birds, 1 stone). Sometimes I walk or do PT strengthening exercises. Lately, I have been doing a core strengthening yoga video by Lesley Fightmaster. It’s the bomb.
• I stretch and do mobility work for cool-downs.
• For MSS days, I have still been doing the CVX workout from P90X3 (Beachbody). It works well, but I’m starting to get bored. I’ll probably switch it up next month or when the protocol is over.
• On base pace days, I either walk outside or do aerobics moves inside (ex. marching in place). The indoor aerobics moves are getting boring as well. It’s hard to find cardio workouts that are not HIIT, so it will be a challenge to switch this up. Perhaps I will revisit The Fitness Marshall and march through the ads, loading the next video, etc.
• Jump roping is still working out well for interval training.
• The intervals jumped up to 2 minutes this month. It was brutal. The first day of this increase I wrote a note saying, “Calves. Burn. Hard AF.” Interpret that as you will.
• For recovery sessions, I have been continuing to do Fightmaster Yoga videos. I have been bitten by the yoga bug. I’d love to do more yoga when the protocol is over and I have more freedom in my workouts.
• My husband and I are still doing Beyond Flexibility in the evenings.
• For strength training, I am continuing to create workouts that are a blend of various things I have done throughout the years, including P.volve. The strength workouts take me around 30 minutes to complete.

How I’ve been feeling

It’s been a somewhat rough month. I had a significant flare-up during the beginning and middle of this month for no reason in particular. I am on the uphill from that now, though. Due to that flare, I haven’t made any overall progress in how I feel, but that’s okay. It’s normal for healing to be non-linear like that.

Next month, as the Modified Levine Protocol wraps up, I will discuss in-depth the benefits/pros vs. cons of this exercise program. If you are curious of my thoughts so far, after Month 5, I wrote about the benefits that I had observed up until that point.

Looking ahead

Next month is the last month of the program! Woot woot!

Next month comes with increases in the interval training. It will be tough. The rest of the workouts look similar to this past month.

Other Modified Levine Protocol posts

Modified Levine Protocol- Month 8 and Final Thoughts

Modified Levine Protocol- Month 6

Modified Levine Protocol- Month 5

Modified Levine Protocol- Month 4

Modified Levine Protocol- Month 3

Modified Levine Protocol- Bonus Time

Modified Levine Protocol– Month 2

Modified Levine Protocol- Intro and Month 1

Link to the Modified Levine Protocol Program

Modified Levine Protocol Program

Anyone else doing the Modified Levine Protocol? How is it going?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.