So you were just diagnosed with a condition that causes “exercise intolerance” yet oddly enough your doctor tells you that your healing journey involves exercise to avoid deconditioning. Having POTS can put you in a lot of Catch-22 situations. You are supposed to increase your fluids by “a lot” (not very specific instructions), but not too much because too much water can cause an electrolyte imbalance and make you even more dehydrated. However, increasing your electrolytes may cause stomach issues as a result of taking too much sodium. A rather grueling situation I dealt with when I first was diagnosed involved instances of bradycardia. Here I am day after day trying to combat my excessive tachycardia with medications to reduce my heart rate, and yet on a whim, my body decides to reverse the issue and cause my medication to hinder it instead. I’ll discuss my experience with bradycardia in my future post regarding POTS and your period. With POTS, you are also told that stress and worry will accentuate your symptoms by perpetuating the fight or flight cycle your body finds itself in due to autonomic dysfunction. Yet, the mental strain that comes with having a chronic condition, especially one that is undiagnosed, is extremely stress-inducing. Stressors like emergency-mimicking symptoms, having to become significantly dependent on others, and rapid lifestyle changes like leaving a job or quitting school can be very difficult to accept. Especially when you are unsure of a prognosis. Unfortunately, I believe every POTS patient, even those diagnosed quickly, will in some ways influence the severity and length of their POTS flare due to mental stress and anxiety. Just the knowledge that your anxiety and worry will make your symptoms worse can make you stressed about your ability to stop stressing. You may be wondering where I am going with all of this.
The reason I am bringing up Catch-22 situations is because exercising with POTS is certainly one of them. Probably the most notorious. Many are told that POTS causes exercise intolerance, but are simultaneously told that they must exercise to improve their tachycardia upon standing and overall circulation. This is a very confusing and irritating thing to hear. Many times doctors do not provide much information concerning how this would work given their patients’ current state. They simply say, “Do recumbent exercises, and if you feel too bad, you should stop.” Now, for some people, this is absolutely doable. Some are diagnosed with POTS at a time when they are still able to somewhat exercise and continue basic activities and even work/school, just with some difficulties and some lifestyle changes. For others, they may be practically bedridden and/or passing out multiple times a day/week and can’t fathom exercise. Exercise for them may start out extremely simple. Getting out of bed and walking slowly around the house. Doing some stretches. When I first got sick, this was all that was possible. Exercise with POTS is very dependent on a few factors. On how active you were prior to getting sick, how severe your POTS became or still is, how much deconditioning you have experienced since getting sick, and also how you feel before, during, and after exercise. Let me expand on these.
Activity and Athletic Ability Prior to Getting Sick
Your athleticism prior to getting sick can influence your ability to attempt certain exercises as well as how strenuous certain tasks become with POTS. Attempting exercises that you have never done before or trying to do the type of exercise you did prior to getting sick may very well be unattainable. If you were pretty active prior to getting sick it can be somewhat helpful when attempting to workout again. Also, each POTS patient has slightly different triggers at different severities when it comes to movement. Of course standing is difficult for all, but other triggers like raising arms above the head, bending over, twisting the body, and tilting the head back may be harder for some than others. A very critical point must be made regarding prior athleticism and its correlation with POTS. While it certainly influences the type and duration of exercise you can do once you are sick, it does not necessarily make your POTS less severe overall if you were in great shape, and being in poor shape prior does NOT lead to POTS in any way. I do believe that leading an overall healthy lifestyle prior to being sick can have some positive influence regarding your ability to go into remission in the long run, however, even the most active and healthy people can develop sudden and severe cases of POTS that render them pretty immobile. For anyone attempting to exercise or do activities after developing POTS, it can be very discouraging and surprising to find your physical abilities so changed. You do not want to set unrealistic expectations when you first start and you have to set the bar lower than you think. Starting very slowly and experimenting with how certain positions and durations of things feel is absolutely crucial, and it must be noted that what you can do one day, can and will change other days.
The severity of your POTS at its Worst
As I mentioned, exercising following a POTS diagnosis can be attainable for some and seem impossible for others. It is not realistic to start exercising when you are practically bedridden. You will likely need medication to lower your heart rate and perhaps manage blood pressure. Even medicated, working out may be far from possible for some at certain points in their POTS journey, and so starting very small and building oneself back up little by little may be all that is possible for a long while. You may find that for some duration of time you are slightly better or more functional as time progresses and you try different treatments. This is a prime time to experiment with your physical capabilities. Consistency is absolutely key over exertion. Over exertion is a primary reason people with POTS find working out to be grueling and flare inducing. Honestly, it is going to feel very confusing at first and takes a lot of trial and error. You may not know you are over exerting yourself. One week you might be able to do some things with minimal issues following your workout and the next week you may find it very difficult to get through your exercises and may even fall into a flare. It’s true that starting up exercise following a severe flare in your POTS is going to cause some smaller flare ups through the process. Even if your POTS becomes severe in a matter of weeks and not much time has passed, your body may already be changing much quicker than you expected. I am going to go on a bit of a tangent here regarding my personal experiences and how the nervous system holds onto memories, so feel free to move on if you are just looking to read about exercise.
The autonomic dysfunction that you are experiencing with POTS instigates panic on top of the fight or flight signals being sent throughout your nervous system when you stand or move, because you are being hit with extreme levels of adrenaline and even though you know there is no danger present, your body is acting as if there is. This exhausts the body especially when it is new and sudden, and your body can start to hold lots of tension as it braces itself for another POTS attack. I have seen this in myself especially. Even if I wasn’t focused on the symptoms, I could feel the effects of an attack hours after, and felt slightly removed with constant tension all throughout my body. Severe POTS flares can certainly be traumatic and your nervous system holds memories even if you don’t remember them yourself. All of this to say, you should not hold unrealistic expectations for yourself because your body is working much harder than you may know, and healing the nervous system is not a linear process. I have noticed that I have unintentionally blocked out some memories of my most severe episodes and the time during the first few months of becoming ill is very cloudy to me. It has been almost a year and a half, and though I have gone through many setbacks, I am significantly better than I was to begin with. Even so, I find myself suddenly remembering certain traumatic moments that I have not thought about in a long time, or even things I had completely forgotten. Certain symptoms will send me back to when everything started and it can be very easy to spiral into thoughts of the past. The fear of becoming as debilitated as I was in the beginning is always lingering.
Deconditioning and its Influence on Starting to Exercise Following a Severe Flare
Deconditioning perpetuates the positive feedback loop that is being “stuck” in a POTS flare. With the initial onset of POTS or your first severe flare up, there may be a stark contrast between the life you were leading all the way up until you got sick and the life you proceeded to live for the duration of your POTS flare. Being bedridden, not being able to work or attend school, not exercising or participating in activities, especially if you led a busy and balanced life prior, can certainly change the ability of your body to handle even the most minor activities. Of course the POTS itself significantly reduces your tolerance to physical activity, but in addition, your body begins to lose muscle, you may gain or lose weight, your joints and muscles may become tight, and your cardiac output begins to decrease, making the postural tachycardia even more grueling.
Not only are you facing the wrath of POTS, but you are also facing the wrath of your body that is not happy with your sudden and prolonged immobility. The worst of it is, the more deconditioned you become, the harder it becomes to start getting better. This doesn’t mean that you need to start with exercise, especially if you are having trouble walking, but in those moments when you feel somewhat “better” even if it is only so slightly, it can be very beneficial to do some stretches, go sit outside and get some sunlight (not too long though), and just walk around your house slowly or even to the end of your driveway or street. Doing these very minimal activities over and over again will allow you to gain the strength and ability to do more and more things with less symptoms. Deconditioning is inevitable so do not blame yourself, and do not scare yourself into thinking you will never be able to pull yourself out of the cycle you may be stuck in.
How you Feel Before, During, and After Exercise
It is of course, important to be aware of how you are feeling during exercise as you want to make sure you are taking enough breaks, drinking water, and gauging your heart rate somewhat. However, obsessing over your heart rate during exercise will be of no help to you and will stress you out, bringing further anxiety during exercise in the future. You should check in here and there, especially at the beginning of your exercise journey, but know that your heart rate will be high, probably much higher than it ever was when you exercised before and this is okay. I know some of you are looking for a number that indicates when you should stop. You think “Okay, but what heart rate is TOO high”. I too eagerly searched for this to make myself feel better. The answer, however, is that everyone is different and it depends on what your heart rate was during exercise before POTS.
Some people will naturally have much higher heart rates to begin with. You should be more worried about how you feel. If your heart rate is beating super hard as well, it may be time to back down. You are going to get somewhat dizzy, but if you feel like fainting or feel super nauseous, you are likely overdoing it. Simultaneously though, don’t be afraid to be symptomatic. Especially in the beginning, you are going to feel overwhelmed with symptoms. If you thought exercise was hard before POTS, it’s going to get a whole lot harder. Sit with your symptoms and try your best not to let your emotions overrun you.
I found that exercise became a very emotional thing for me. At first, it was a constant reminder of how “weak” I had become and I was scared at how little I could handle. I was also very sad because I really liked exercising. It made me feel strong and confident and gave me a boost of serotonin. It gave me a break from the stress of daily life. After POTS, it just felt like another kick in the head. But only sometimes. This is why you must keep going. Eventually, you will be surprised to find you are able to do something you never thought you’d do again. You will start to feel some of those same benefits you used to derive from exercise. Just maybe not all at once and not all of the time. You are going to hate it sometimes, and you may not be able to get through it and that is okay. This is where it is important to gauge how you are feeling before you work out. You may have planned to work out one day but if that day you experienced episodes and were unable to do basic tasks, it may be smart to skip and rest or simply do stretches or some yoga. Maybe all the exercise you can do is simply stretching and some yoga here and there. That may even be too challenging on certain days.
I will say, I have noticed that how I am feeling prior to a workout may not always be a good gauge on how I will feel during it and sometimes I actually end up feeling better during the workout. It’s odd, but sometimes with POTS you actually seem to feel better with movement and standing. Perhaps due to the better circulation. Sitting or lying for prolonged periods in a day can have adverse effects on your pain and heart rate. So, pay attention to how you feel. For the most part, you will be pretty intuitive with what you think you are capable of, but in those times that you are unsure, it may be best to just give it a try and know that you can stop at any point. Understanding whether or not the exercises you have chosen are a good fit for you at this point in your POTS journey will primarily be based on how you feel after the workout. Not just how you feel right after, but hours and even days after. You may need to lighten up if you are experiencing some severe lasting effects. You do need to get through the initial brunt of symptoms that come with working out for the first time. There is really no way around that. However, it should not be making you worse off for long periods of time. You should especially make a note if you are having lots of episodes, especially if you are fainting more.
What Exercise Looks Like for Me
I call it a journey for a reason. My relationship with exercise and the types of exercises I do and can handle have certainly been in flux over the last year and a half. The bare minimum exercises I had described earlier were not only what I have seen others recommend but also what I did. I certainly took it one step at a time, especially after I tried to jump back into some things that were far too advanced for where my body was at. I was very active and somewhat muscular prior to getting sick so what I felt and still feel to be the most aggravating is that when I work out, I am constantly torn between wanting to push my muscles more but trying not to push myself too much cardio wise. Even now when I exercise I pretty much always stop due to my heart rate and dizziness rather than stopping because my muscles are worn out. For the longest time, even after I experienced deconditioning and muscle loss I did not feel like I could ever push myself enough to really feel the burn like I would with exercise in the past. For some time, exercise just became about building up my cardiac output and increasing my ability to withstand postural changes. Currently it is still mostly about that, however, I have been able to push myself a little more to where I feel like my muscles are getting stronger. I am going to share what I do for exercise, but remember, there is not one workout that is the perfect POTS workout per say and this is what works for me currently in my journey:
Twice a week I do the following body weight exercises which can be done on a mat and do not require much space so they can be done at home:
- Fire hydrants (can use a resistance band): on all fours, extend your knee out to open your hip and then extend the rest of your leg fully and then pull it back in. This is 1. I do this 20 times, take a break, and repeat on the same side. Then I do the same on the other leg
- Rainbow kicks: similar to fire hydrants but you will extend your leg straight back behind you to start and then you will essentially draw a rainbow with your leg while keeping it straight. Try and make the rainbow as wide as possible until you feel a burn in the side of your glutes. 2 sets of 20 on each leg
- Bird dog/ alternate arm and leg raises: on all fours you will raise your arm and opposite leg while squeezing your core. You will fully extend your arm and leg straight out and then bring in all the way in toward your core. This is 1. I do this 15-20 times with my right arm and left leg and vice versa 15-20 more times.
- Two legged calf raises (can do these weighted; hold a weight in each hand by your side or just one weight centered in front of your pelvis): Just standing calf raises using both legs. I do these until my calves really burn (or until my heart rate feels too high). These are great for pushing blood that pools back up to your abdomen and head and they are good at concentrating all of the work in the calf muscles without making the rest of your body too tired. They are of course standing so if you need to you can do them seated at the edge of a chair.
- One-legged calf raises (can also do these weighted; hold weight with arm straight and hanging by your side; use the left arm for left-legged calf raise and vice versa): You can balance yourself using a surface level to your pelvis like the wall or a desk. Try and just use your fingers to aid your balance so you are concentrating most of your weight on your leg. You will use the hand opposite to the leg you are raising to balance. I do roughly 15 of these on each leg. I finish the calf raises with another set of two-legged calf raises.
- Lunges (can do these weighted; hold weight with arm straight and hanging by your side; use arm opposite to the leg you have out-front): These require a significant postural change and were something I added later on in my journey. I do these slow and controlled. I do a set of 10 on one leg where I dip down, lightly tap my knee to the ground, and come back up while remaining in the position where I have one leg up in front and the other leg behind me. Then I take a break. (I typically sit down because these still make me dizzy and make my heart race) I repeat with the other leg forward.
- Squats (can do weighted or use a resistance band): Similarly to the lunges these also require a significant postural change so I certainly take these slowwww and controlled. Since I do a low number of them, going slow not only makes the postural change less severe but it does give me a better burn in my glutes and quads. I do 2-3 sets of 10
- Abs: I mix this up sometimes but I typically do 3-4 different exercises such as:
- Bicycle curls: balancing on your tailbone, bring up your elbows with your hands behind your head and bring your knees up so you can bring one elbow to the opposite knee and vice versa. I do 2 sets of roughly 30-40. Sometimes I get nauseous doing abs with my POTS so I may have to stop and breathe deeply,
- Crunches: lay on your back and bring elbows up with your hands behind your head like you did with the bicycle curls, and then essentially do a half sit up where you keep your lower back on the ground. I do 2-3 sets of roughly 30 of these.
- Plank: plank on elbows or hands. Hold for 1 minute
- Plank hip dips: while in an elbow plank keep your feet as well as arms as straight and together as possible while dipping your hips down to the right and left alternating. I do roughly 40 of these.
So, that is my current workout. No, I did not start out with this when I initially started getting back into exercise after being bedridden. I started minimal exercise not too long after I had been bedridden because I experienced random waves where I was more functional and then would plummet again, so it was not consistent and varied a lot over the course of a year. I was still having lots of scary episodes and could not walk very much so I would do maybe a few sets of abs and one or two of those glute exercises and be done. At one point I started going to the gym (not alone) and using the seated leg machines and lifting small weights while also picking a few of the body weight exercises to warm up with but this proved to be too much for me and honestly, on days that I did that, I spent most of the day sitting or laying down and barely walked much. There were certain periods where I felt it was important to just prioritize walking as my activity. Yes, I wanted to build my muscles up but I also needed to be able to sustain a basic amount of walking so I could actually leave my house and do small activities or errands. That brings me to a small discussion about walking.
Walking
I personally believe that walking is so integral to improving your POTS because you are upright but are steady and can pace yourself how you need to and walking pumps blood back up to your upper body. It can feel easier than being upright and just standing in place since your blood is circulating better. You can also build up your postural tolerance little by little with walking and can start with the absolute bare minimum like walking around your house slowly or walking to your mailbox and back. It can be good to walk outside but you can stay in your backyard if you have one if you are afraid to pass out or have an episode. You can eventually start taking short walks around your neighborhood or near where you live.
Consistency over quantity is also very important here. For a while you may just be able to do a 5-10 minute walk at a very slow pace. Consistency through the bad days is also so important. This may not always be possible some days but even on a bad day it can be very helpful to get out there and try. I find that my body surprises me all of the time. Sometimes I have had a day where I can barely get out of bed and I muster enough strength to get up and attempt a walk and I actually end up feeling pretty good and doing more than I thought was possible. It is very important to listen to your body with chronic illness, but simultaneously if you are unsure if you can do something because your illness has been up and down all day, if it is low risk, you should certainly give it a try. I honestly found that doing even the smallest amount of physical activity on those days I thought it wouldn’t be possible, has contributed greatly to my recovery process.
Something to remember when walking is that typically you will feel the worst at the beginning, especially if you have been sedentary most of the day. This is why I would typically not try and gauge how the walk would pan out and how long I should walk towards the beginning. After about a quarter of the way into my walk I would typically feel different compared to the beginning and could then plan out the rest of it as I went along.
I think it’s important to have some distractions especially when you first start walking because you may focus on your symptoms and may feel anxious and unsure especially if you are away from your home, but eventually you have to trust yourself and keep a positive mindset while you do so. Music is great for this. Music has allowed me to push through some of my toughest battles with chronic illness and it can help calm your nerves so you aren’t adding anxiety on top of your POTS symptoms during physical activity. It is also very helpful to walk with other people so you can talk and will feel comfortable being outside your home. Walking indoors may be a better start if the weather is triggering your symptoms as well, but eventually it will be important for you to incorporate slightly warm or cold temperatures into your walking so your body can get better at regulating its temperature and not throwing you into a POTS episode every time the seasons change.
Lastly
I plan to keep you guys updated regarding my exercise journey with POTS and I also just wanted to list some helpful exercise resources for POTS that I have come across.
- Salt for POTS: A website for an app created by Sara Johnson, a well-educated certified personal trainer and exercise therapist who has POTS and EDS. The website details her story and the mission of the app. The app itself is an exercise plan curated specifically by someone with POTS for those with POTS, and it includes a variety of levels to start at depending on your current abilities. The full workout plan requires a subscription but you can do a trial run to see if it is for you. I trialed the plan and thought it was very well put together and pretty helpful. Personally, I have decided to take my exercises into my own hands specifically and have found what works for me but this is certainly helpful if you do not know where to start and are not satisfied with the CHOP protocol.
- Social media accounts like potsandprs and its_all_about_that_pace. They are both physical therapists. Alia of Potsandprs has many workout videos and coaching on her social media and Naomi Bauer (PT, DPT, CCS, Physiotherapist) shares her Pace program where she is able to curate specific exercises and holistic treatments for POTS patients
*Positive / Helpful Tip* : set a goal for each day. It can be physical or mental. Even if it is very minimal, have something you can look forward to and feel good about doing. This can and should change based on what you can do and what you feel is important for you at a certain time. Life during a POTS flare can feel very mundane and repetitive and it’s good to introduce new things and something to look forward to even if it’s just a self-care night, watching a movie, or doing a meditation.
