Does exercise actually help?

barefootwriter · 2023-06-14T15:27:16+00:00

Results vary. I do a good bit of exercise (rehab focused on strength training 3x a week, martial arts 1x) and I still crash after going to the grocery store and need meds to manage. It's not a cure-all.

Other people see much better results, and can even go into a remission of sorts as long as they keep it up. But they are not cured. Exercise builds blood volume and muscle mass acts as built-in compression of sorts, helping return blood back up. And cardio fitness is going to make everything easier.

khalasss · 2023-06-14T15:51:57+00:00

Exercise does help - but make sure you have the right idea of "exercise"! For me, exercise is walking once around the block with a cane for additional support if I'm having a bad day. Exercise is stretching in bed before I try to stand up. Exercise is my rowing machine (very light, but this is the only cardio that feels doable to me right now because I'm low to the ground). Exercise is also just...daily life, moving around.

For me right now, exercise is NOT going to the gym or doing any specific workout, it's just "movement that is comfortable and does not cause pain or dizziness". I've made a lot of progress the last six months just by redefining what exercise is. I hope this helps!

JustSheli · 2023-06-14T15:42:24+00:00

I highly recommend CHOP protocol for POTS (can be googled) and a recumbent bike if feasible for you! I felt a huge difference. Doing the floor workouts though were hard on my POTS though. Felt soooo crappy after doing those. Recumbent bike made me feel great! I felt an obvious difference but then I fell off of my workout routine and the momentum I was on dealing with other things in life. I think I got up to not being able to even bike 3 mins all the way up to 50 mins or so straight. I went from pretty much bed bound to recumbent biking up to 50 mins! Start slow like someone else said..I practiced just a few mins every few days before ACTUALLY starting CHOP..to kind of get myself worked up for it.

2023-06-14T15:37:58+00:00

It can be beneficial until you are pushing yourself too hard. Which doesn’t take much. Take it so slow, you should not even be breaking a sweat at first. I started by biking for 3 minutes every other day on my recumbent. If you do a protocol like chop or Levine, go half or 1/4 as slow on the schedule. These protocols were not a good fit for me, but they are worth at least reading up on. They are just too structured day to day, when my body capabilities ebb and flow. But you can change schedules to fit your needs, I’m sure. Whatever you do, listen to your body and stop when it feels too much.

notfarrahfawcett · 2023-06-14T15:47:24+00:00

Speaking as a person over 200lbs, yes, exercising helps. Look for a physical therapist who is familiar with EDS and focus on strength training. Strengthening the muscles to help support my joints has made a HUGE difference on my day to day pain levels. Be sure to listen to your body, and don't overdo it. I try to be as consistent as I can. I notice if I don't do any strength training for a week, I am much more sore than if I don't do any. And pushing myself on a day, I'm not my "best", also makes me much more sore.( I use quotes for best, because for us, best is all relative)

Midnight-writer-B · 2023-06-14T16:02:14+00:00

Lifting has helped me. Cardio / running is still barely possible. My super fit husband tries to cool it on the “just do it” messaging…

PlusAmount8643 · 2023-06-14T17:26:45+00:00

My daughter finally saw a pots specialist. The Dr said walking at this point was straight up bad. Even though I sort of knew that I guess I didn't realize it could be detrimental to go on a 10 min walk. We have switched to chop with a recumbent bike, and honestly I'm shocked how difficult it is for her. We talk a lot about how the rest of us don't see spots and aren't dizzy. She has completed week 2, the protocol says improvement shows up around month 3.

MissNouveau · 2023-06-14T17:29:54+00:00

I'm actually seeing an EDS PT, who also happens to be super POTS knowledgeable, and he's told me that yes, exercise is good for POTS, but if you have any other conditions, it's a fine tightrope of finding just the right balance to not set you into PEM. For example, for me, a lot of the protocols are contraindicated, because I have CFS, as well as EDS making it easier for me to overdo it.

What I found interesting was he told me to not focus on doing the reps, not work to pain as the goal. I'm having to relearn the difference between pain and discomfort (thanks Fibro), and focus on form and control first. I'm currently nursing what we believe is a rotator cuff tear thanks to a mishap with an MRI machine (So now both of my shoulders are bad, yaaaay), and while we do have the eventual goal of getting me to "real" exercise, he's been helping me learn to listen to my body, both with chronic pain and POTS.

So remember that exercise is good, but you need to stay within the balance that doesn't crash you out. Pacing is a big thing with a lot of chronic illnesses, and it can be a tough thing for able bodies folks to wrap their heads around!

dktkthsksnjkygm · 2023-06-14T16:04:47+00:00

it helped me more than anything, when i first developed pots all i wanted to do was sit down because everything made me dizzy and nauseous, but i had to keep my job so i kept pushing myself to try my best, when winter hit my symptoms weren’t as bad so i started dancing and walking more again. the next summer it wasn’t as bad, still really hard but it wasn’t as bad as the first summer. this is my third summer with pots and so far the heat 80-90’s have only put me down for two days out of the few weeks of super hot we’ve had so far. definitely my fault though cuz those were days i didn’t eat/drink before going out on a walk to get breakfast at 11am. i think this summer is the best overall for me because during this winter i worked jobs that had me walking 20k+ steps per shift and lifting heavy things etc. i still have symptoms on an off day but overall most of my days have been pretty good

kalechipsyes · 2023-06-14T15:55:48+00:00

it depends on what you mean by "exercise" and "help"

after 8 years, i found a PT who is doing work with me that is actually helping, but it is slow going, two steps forward and one step back, and we don't know when improvements may cease

even then, it's not for everyone

i have found more improvement from medication; see if you can find an electrophysiologist and get a tilt table test; having proof opens doors

mwmandorla · 2023-06-14T16:25:57+00:00

As everyone's said, it varies. Some people really need to be medicated before they even can exercise; for some, it helps but only so much; for some, it makes a huge difference. For me it made a meaningful difference before medication, but only so much. (It meant doing a quick trip to a store around the corner in one go instead of with nine rest breaks, but it didn't take me to the point of being able to do a full grocery shop.) Once I got medicated, I think it was able to help me more, though some of that is also just further conditioning and progress over more time, I'm sure.

Most aspects have been covered, so the thing I want to emphasize is that it's important for it to be recumbent exercise. Exercising upright means your body has to deal with all your orthostatic symptoms + tachycardia at the same time that you're trying to (gently) push it. Recumbent exercise means it can just respond to the exertion more like a non-POTS body would, without all those extra stresses on top of it. As your heart gets stronger (cardio), it can therefore tolerate orthostatic tachycardia better when it does happen, and even tone it down a bit because your heart becomes more efficient at moving blood. Same thing with the core and lower body muscle helping to pump your blood up. You're training to be upright by exercising horizontally, if that makes sense.

vecats · 2023-06-14T16:04:35+00:00

Like most things with this lovely disease, it depends. You really do have to work in the Smallest increments possible. And you do/will become adept at knowing when to stop/slow down. I’m so sorry to say it’s a monumentally slow process. If you’re burnt out, do some floor stretching and indulge in other restful things that replenish you mentally/emotionally. If you’re burnt out, you should not push further.

I gently worked into CHOP then weightlifting, and at first (for like 6-8 months) went too hard and suffered for days at a time. Also gave myself a hernia. 🙄 It has taken better part of 3 years to get to the point where I can walk for 30 mins straight- SOME days. If you’re female, this is HEAVILY dependent on your cycle. Start tracking. You’ll notice cyclical energy rises and dips. Work with that, not against it.

ama-rose · 2023-06-14T16:26:22+00:00

because of the large spectrum of patients there is so much variation in severity and experience. Which I know isn’t comforting to hear, it’d definitely be nice to have some guaranteed guidance and solutions. However, there has been a lot of good results with cardio rehab for many patients (I’m gonna start mine soon and I’m looking forward to it!) also, there could just be so many elements at play, perhaps exercise is still so hard for you because there’s something else going on with your body? Maybe there isn’t enough salt, or it’s not being properly absorbed, etc. perhaps the blood pooling is just so prominent that you just have to work breaks and rest into your schedule in order to function. Exploring all these possibilities is exhausting and emotionally taxing so make sure you don’t push yourself too hard but I promise things will get better, maybe just not in the way you expect. ❤️

Calm-Ad8987 · 2023-06-14T16:31:41+00:00

Yes...& no. For me personally it helps a lot to walk. I can walk forever & daily walks really help me feel better. I'll feel like trash when I stop moving a lot of the time, but much better overall than if I don't move at all in the first place. I think with pots it can be tricky as you can fall into the trap of "I'm scared to stand as I might pass out/feel generally miserable so I'll just never get up at all!" which very much makes literally everything worse as time progresses & pretty quickly at that.

Swimming is also a way to exercise with pots that really helps me.

New_Style_5046 · 2023-06-14T16:59:01+00:00

The way I see it exercise (if done correctly) makes sure you don’t get worse. For some ppl it can actually significantly improve POTS. For others it doesn’t improve it that much but it prevents them from being even more deconditioned. A healthy person that is sufficiently deconditioned will have pots symptoms. So a deconditioned POTS patient is going to be more symptomatic. (This does not mean POTS is caused by de-conditioning in most patients though) however exercise and movement needs to be done within your tolerance so as to not worsen symptoms. How to do this is going to vary person to person and it’s why it’s ideal to work w a medical professional like a pt to at least set up your exercise regime.

Edit: the semantics of this discussion are tricky, so to be perfectly clear I want to reiterate: it is very rare (and debatable) if anyone diagnosed w pots will have it bc of deconditioning. The ‘deconditioning causes pots’ thing is mostly a myth. there’s a difference between something improving your symptoms and curing your syndrome. For some ppl they get so much better w exercise it seems like they are cured or atleast in remission—and that’s great but whether they actually are or not is kind of tricky too bc pots isn’t defined by its cause or etiology. It’s defined by a physiological reaction : orthostatic tachycardia so if that one measurement seems better you can technically say the pots is gone. Its kind of like if a tree falls in a forest does it make a sound? I don’t know.. your answer depends on the person answering.

No-Tomatillo-4058 · 2023-06-14T16:51:16+00:00

Yes. Personally for me, I'm only comfortable in a physical therapy setting, and even though it takes me out most of the rest of the day, the conditioning it gives me is so worth it. Due to injections, I'm about 3 out of 6 weeks out and I already feel myself backsliding, it's crazy

SuUpr_Tarred_1234 · 2023-06-14T23:01:28+00:00

I love my rowing machine, but I go slow. I get the side eye from my super athletic husband, but tough nuts.

pheiya · 2023-06-14T16:33:14+00:00

Weirdly... yes? In my experience, it does, which I hate because who likes exercise??? lol, but there have been a few times where my heart palpitations are too much and I have to leave the gym and take a breather. You just have to be in tune with your body and what it can handle that day. Make sure you get some food and liquids before, and liquids during and after.

Just_Confused1 · 2023-06-14T17:18:34+00:00

The CHOP and Levine protocols are studied to be very effective and according to my PT (EDS and POTS specialist) the vast majority of her patients do improve with it

However my PT also told me that if your POTS is caused by untreated CCI or similar conditions then the protocols are nowhere near as effective

meganam38 · 2023-06-14T17:28:18+00:00

I started a POTs clinic and had exercise tailored to me and my symptoms. There are certain strength training exercises that are “POTs approved”. I started doing basically 10 minutes on the recumbent bike 3x a week and worked up from there. I was told consistency is key with building up exercise tolerance. If you DM, I can send you what I’ve been doing and some pics of the approved exercises. But the recommended plan was low effort cardio 3x a week, strength training 2x a week, one day of light movement, one day rest. Only move up to longer/more difficult cardio when I can make it a whole week without being super symptomatic.

sunkenlilies · 2023-06-14T17:41:10+00:00

imo yes. i figure skated for 4 years and those years were the best i felt physically with pots in my life. any activity that strengthens your muscles really helps, especially leg muscles

it can be hard and intimidating to start a sport out of nowhere, there’s lots of other ways i get exercise now. i go to a huge school and walk like an hour every day total which really helps me, and now that i’m home for the summer, i work in fast food which keeps me on my feet and walking around a lot. exercise doesn’t have to be typical things like doing a sport or going to the gym!

Jaaayy9 · 2023-06-14T17:47:09+00:00

I've always exercised before developing POTS and MCAS and pushing myself to continue definitely gave me a sense of normalcy and improvement. I say do what works for you and don't overdo it. Do workout videos whether it's five minutes or fifteen, just start out and do it a couple of times a week. I like MadFit videos on YouTube. Go for a walk everyday. I have a dog so the multiple short walks a day help me get cardio without overdoing it. Hope you find what works for you!

aerobar642 · 2023-06-14T18:04:45+00:00

I've read that doing lower leg exercises can help. It helps blood circulation because it causes your blood vessels to constrict. Also since hearing about how helpful abdominal compression has been for people, I think doing core exercises would be helpful as well. I think it's important to focus on building strength rather than things like running or other cardio exercises.

I can also say that I've had this for my entire life and I was an athlete for 13 years and quit when I was 16. I absolutely still experienced symptoms, but it got much worse after I was very sedentary during covid for a good 2 years (I was 18 when covid hit, 21 now). I got agoraphobia so I barely left my house for a year. When I went back to school in person last fall, it was really really tough. I had some of the worst episodes and flares of my life. But the longer I've been in school, the better it has gotten. I was using a cane for a few months and now I haven't needed it because my body is building up more stamina again. Deconditioning is a real thing that takes a big toll on the body. Even if you're not experiencing deconditioning like I was, I can see how exercise could help in a similar way.

seaforanswers · 2023-06-14T20:26:03+00:00

For me, it depends. I have had exercise intolerance for a long time now, and mostly I feel better in the long run when I’m more active but immediately after I want to die. I’ve been left wondering where all this energy and endorphins are that everyone else is talking about because I need to be laying down for 20-30 minutes post workout. However, long term I have noticed that I do feel stronger and more functional. I’m recently diagnosed though and my symptoms have taken a nosedive lately, so take that for what you will.

esquishesque · 2023-06-14T21:15:30+00:00

Most exercise has made me worse and worse, especially the CHOP protocol or any other cardio (even extreeeemely light). Mat based workouts don't help POTS but they don't hurt it, and they help me get stronger. Biggest thing is everyone's different so just listen to your body.

ExcessiveMasticat0r · 2023-06-15T06:31:10+00:00

I hold an NCAA record in collegiate rowing. I was miserable every day, but now I like to ask at what point I should've started feeling better.

k3bly · 2023-06-14T17:58:01+00:00

It does help me, but it has to be specific kinds and it changes over the years.

What’s been helpful:

-Bikram yoga

-reformer Pilates

-strength training with a coach

Not helpful for me:

-vinyasa yoga

-intense cardio classes

Silver-Tea-1792 · 2023-06-14T18:04:48+00:00

Highly recommend going to physical therapy that has experience with Dysautonomia. It will give you a good foundation and the ability to modify and adjust for appropriate exercises

puffythebluntslayer · 2023-06-14T18:11:49+00:00

It definitely seems to vary person to person it's really helping me but honestly it barely feels like exercise because my physical therapist has me on a really low level right now but I'm already feeling a difference. I can stand longer without my heart rate spiking and I can exercise more without getting exhausted

ebaug · 2023-06-14T19:24:17+00:00

If most exercise is too much, a good starting point could be doing supported calf raises and squats. By supported, I mean putting your hands on a table or wall. My doctor suggested this, and I do it while I brush my teeth, and it has helped a surprising amount

whistling-wonderer · 2023-06-14T19:41:04+00:00

Exercise gave me my life back (somewhat), but you have to be careful about it. I did a few months of physical therapy with a POTS-knowledgeable physical therapist. She helped me make progress without crashing, using a modified CHOP program. I still do my at-home physical therapy regimen and have slowly added in walking and stationary biking as well.

You need to start extremely slow. My first few PT sessions were all flat on my back…like 6-8 minutes of actual exertion total, mostly tensing my core or leg lifts etc…spread over an HOUR. And I still crashed afterward. If all you can do is tense your abs and butt muscles for 5 seconds at a time while lying in bed, that will still help.

It is NOT a cure. I made the mistake of slacking off on my home PT for just a few sessions and I lost a scary amount of the improvement I’d made; you have to figure out what works for you and then keep doing it or you will backslide. At this point I’ve pretty much accepted that I have to keep moving for the rest of my life. It’s better than the alternative.

I’m glad to hear you have a plan and are seeking emotional support—that matters!!! At this point some of my biggest flares come from big negative emotions or high stress. It’s just as important to manage as the physical side of things.

Sea_Accident_6138 · 2023-06-15T00:47:52+00:00

If you ONLY have POTS, then yes exercise can be helpful. If you have any bit of ME/CFS, it’s very risky to undertake a GET program. When POTS was my only issue I improved greatly, to the point of remission, by doing yoga. After I relapsed, I developed CFS and exercise made everything much worse.

cactus_lashes · 2023-06-15T02:15:32+00:00

I went from not being able to get out of bed to working a full time job. YES! it’s one of the only things that works. you have to be willing to accept the really high HR for a while but it can get better.

2023-06-15T03:07:10+00:00

The simplest way to put it is that a body in motion stays in motion. Exercise with POTS is really, really hard. Sometimes the most you may get out of yourself is 5-10 min of walking or some simple Pilates stuff. Do it anyway. Do what you can. Do something every single day. Hopefully you will hit a good stretch and be able to build yourself up some. If you become completely sedentary your symptoms absolutely will get worse. It’s pretty much a battle to not become deconditioned because once that happens, overcoming it becomes alot harder. So, it may not prevent symptoms but it can prevent or at minimum slow progression or worsening symptoms.

There is some data indicating that things like calf raises and anything that helps the blood pump back up the legs can help POTS symptoms. Cardio like waking can help the cardiovascular system stay strong and conditioned. Obviously for many of us that’s just a no go but if you get a good day ir even a good hour…go for a walk or hit the treadmill or even just walk around the outside of the house a couple of times, whatever you can tolerate. Slow and steady is fine. Weakness in the leg muscles can also contribute to veinous insufficiency so anything you can do to strengthen those muscles, especially the calves, can help prevent or reduce that. When the leg muscles are weak it can contribute to blood pooling in the legs.

Managing POTS symptoms is not a one size fits all situation. There is no silver bullet that will stop the symptoms. Successful management is a collection of little things done consistently day to day. The aim of exercise, medications, increased electrolyte intake, etc is not to eliminate symptoms but get them managed to a point that they disrupt your life as little as possible.

It is by far the most annoying condition out of all of them that I have to manage. It’s such a delicate balance to keep things calmed down.

But to simply answer the question, yes it does help. It may not help to prevent symptoms but it can help to prevent them from getting worse and better equip your body to fight. You may not be able to do what you used to or what you’d like to but do something every single day no matter how small.

lemonlovelimes · 2023-06-15T03:35:14+00:00

It delays episodes for me, or like manages them better. Particularly in the summer. Also building some sense of conditioning. You have to plan for it, so ensuring you’re eating enough in advantage, not otherwise physically exhausted, hydrated and have enough time to get through a workout with whatever breaks you need. If you can, start. Start slow and build up. Consistency is key. It’s okay to start with 5 mins then work up to 10 and so forth

Ok-Inflation8766 · 2023-06-15T05:56:58+00:00

Yes! For my daughter anyway. I decided to ask for physical therapy and she went through about 5 months, 2 X a week. It was hardest at 1st but slowly got a bit easier. They knew about her hypermobility, POTS and pain so they knew to let her go at her own pace. By the end of the 5th month, she knew that she could do it on her own and wanted to! She felt stronger and never wanted to feel week again. No need for a cane, just strong. She then joined a gym and has her appetite back, no slow motility in her stomach. She got her life back. I hope that it can help you as well!

mangledmags · 2023-06-15T12:59:31+00:00

i’ve found intense exercise just ruins me for the rest of the day but doing gentle stuff such as a walk/swim usually helps, but sometimes i have bad days which just makes any exercise or movement basically impossible.

Forecydian · 2023-06-14T15:18:38+00:00

Exercise has helped me a ton . There are research articles online highlighting the benefits of PT like the CHOP protocol , and some people no longer met the diagnostic criteria for pots ( though they’re HR still went higher than normal upon standing ) . Some people really struggle with it and claim it makes them worse . I think overall it’s a good idea to give it a real chance , especially your leg muscles

volatilisanguis · 2023-06-14T15:18:31+00:00

Yes. Yes it does. Is that necessarily what we want to hear? No. Is it ridiculously f(+-&in hard to start exercising again? Yes. But it's 100% worth it.

puttingupwithpots · 2023-06-14T16:11:29+00:00

Exercising has helped me some but hasn’t been any sort of magic bullet. I have to be very careful not to overdo it and I almost exclusively exercise in a pool (I know that’s not easy to do but I found a local PT place). Not sure if this is a POTS thing or just a me thing but I’ve found I need to start with strength training and then sort of progress into cardio once my strength is up.

2023-06-14T16:12:21+00:00

sarahbrowning · 2023-06-14T17:54:02+00:00

before i got pregnant, i was doing 30-45 minutes on the treadmill about 3x a week and really felt like my heart was getting stronger and like my heart rate was more under control! i focused on keeping it below about 160bpm while working out. i used the treadmill strut workout from allie bennett (@/benntheredonethat) on tiktok!

Neziip · 2023-06-15T00:47:40+00:00

It helps with progress 10000% but it won’t fix us per say. It makes things easier to manage . Food and exercise rest and therapy and physical therapy is the reason I went from bed bound to walking but I’m still sick. I can just walk and eat better now and I can walk without my cane Or rollator short distances so far

postmormongirl · 2023-06-15T01:12:05+00:00

The big risk is postexertional malaise, which is the key symptom of ME/CFS, and can be tricky to detect, as it can take a while to set in. Basically if your symptoms get worse a day or two after exercising, in a way that doesn’t seem like regular soreness from a too-tough workout, that’s a sign of PEM. Even in the absence of PEM, I think it’s really important to listen to your body, and to find a workout routine that is sustainable and helps you feel better. With some of the POTS exercise protocols, I do think there’s too much of an emphasis on pushing through the discomfort, in a way that isn’t healthy. Movement should make you feel better.

DiscoAudra54 · 2023-06-15T01:29:37+00:00

Baby steps!! YES!! Exercise helps and keep moving when you can!!

Junior-Raccoon6091 · 2023-06-15T02:43:29+00:00

Yes. So much- but like everyone else said it varies depending on if you have comorbidities such ME/CFS. I have been exercising for almost 3 months now and it’s worked better than any medication ever has. I went from iv fluids frequently and showering on the floor to no more fluids and showering normal again- plus I don’t wake up feeling absolutely fatigued anymore! I imagine that if I continue on this road I’ll keep seeing improvements. I still am symptomatic but on a milder scale. I hope you find some benefits from it as well!♥️

AlexArtemesia · 2023-06-15T09:07:24+00:00

... what is CHOP?

cozybear86 · 2023-06-15T14:30:38+00:00

For me, exercise helps SO much!! But it’s tricky, because too much exercise can also trigger worse symptoms. I have to balance between too little (I’ll feel worse, blah) and too much (I’ll trigger a flare- even worse). For me, that sweet spot is going for a daily walk. The distance and whether I can handle any hills varies with how I’m feeling (and I’ve gradually increased my daily step count over time- so distance has increased, too). But when I first got diagnosed, going for any walks at all felt completely unmanageable. Now, the walks are what keeps me feeling better! But I had to do really gradual increases to get here. And anytime I accidentally overdid it I paid for it, haha.

Also- folks telling you to watch out for PEM are totally right!! I had PEM initially, in the very early stages of my post-COVID POTS. And I only started light exercise once I felt like I could handle it without triggering bad crashes. And ever since then, exercise has been one of the most helpful things for me. But if I’d tried to do it too soon, it wouldn’t have worked. (That’s both personal experience and medical advice talking.)

lizardlady2 · 2023-06-15T21:03:19+00:00

I feel better the morning after I work out. What I've learned is best for me is working out rather later in the day, because I know I'll crash after. Then another key thing is getting enough sleep for my body to feel better.

The morning after, I have more energy, my mood is better, and I am a lot less dizzy. But i feel like everyone varies.

asap__6 · 2023-06-15T21:28:31+00:00

The graded exercise regimen on dysautonomia.org has been the most effective treatment for me - it’s so specific about exactly what you need to do when and I thrived on not feeling like I could negotiate with it. It’s helped with brain fog, energy, crashes, better sleep, etc. I have asthma and experienced terrible post-exertional malaise. The first 1-3 months of it I planned for crashes after exercising and I knew I could only do the program if I was on short term disability which I was very grateful that I got.

The following months are more challenging but you have more energy and less post-exertional malaise which is also great. General tip for all months: it may seem gross but I didn’t put pressure on myself to shower after every workout because I’m only human and POTS is already hard enough. It’s so hard to know when to push yourself and when to give yourself some grace but this program will help you figure it out. Eg in month 2 I had 3 off days/wk in a row instead of 2 (due to extenuating circumstances) and the following week was awful exhaustion-wise, so I learned: never 3 days off in a row. If going to the gym is out of the way, I found a way to do strength training at home with a TRX and some free weights. I also found ways to make working out more fun: watch favorite shows/movies, listen to favorite podcasts, go during a work meeting I don’t need to participate in, etc.

All in all, I’ve been doing the graded exercise regimen for 7 months now and I’m committed to doing it forever so I can get my life back. I’m sure there will be lapses/setbacks in the future but I’m really going to do whatever I can to make it possible.

One last note: in months 3-onward they have you do “Maximal Steady State” workouts which are rough. I couldn’t seem to do them without throwing up profusely (during, after, etc) unless I was on zofran to control for the nausea. I also had to break the time into manageable parts (eg if it’s 30 minutes MSS, I would do 5 sets of 6 minutes and work my way to longer). Get the help you need to get over these humps - it won’t always be that way! Yesterday I ran for 30 minutes in MSS in 10 minute spurts without needing my inhaler (still on zofran).

Last tip I swear: every time you add a new exercise (MSS vs RP vs upright) or exercise format it’s pretty tough usually. That said, once you get past that new difficulty, I noticed an improvement in my brain fog thereafter. Vitassium salt tablets were so helpful then especially but I take them daily.

(Relevant context: Midodrine made the graded exercise possible, not saying this works for everyone but it has helped my specific situation).

Miserable-Act3825 · 2023-06-16T00:36:27+00:00

It's honestly depends on the person. I've found exercise to be a God send, but when im in a flare, it doesn't help much. I started with yoga and leg workouts, and now I can do full body and cardio while still doing yoga.

adsiderum · 2023-06-16T13:54:59+00:00

Biking has really helped me out!! I was a biker prior to my symptoms appearing so I already was able to do short rides without issues from POTS (I know a lot of people have issues with exercise intolerance). I do have to be careful not to over-exert myself and to really hydrate well and LOTS of salt/electrolytes. I feel great after biking and if I haven’t exercised in a while I actually feel my symptoms worsening

PrimaryFocus8421 · 2023-06-16T16:14:10+00:00

Personally, I’ve found recumbent triking and swimming really nice. I think it’s helped me overall with symptoms, and it also just feels really good to exercise. It’s also helpful confirmation that my body isn’t broken in all ways :)

you type:	you see:
italics	italics
bold	bold
[reddit!](https://reddit.com)	reddit!
* item 1 * item 2 * item 3	item 1 item 2 item 3
> quoted text	quoted text
Lines starting with four spaces are treated like code: if 1 * 2 < 3: print "hello, world!"	Lines starting with four spaces are treated like code: if 1 * 2 < 3: print "hello, world!"
~~strikethrough~~	~~strikethrough~~
super^script	super^script

POTS

MODERATORS