I have a standard stationary bike, and I put a chair behind it and pedal from behind. Just in case anyone has a stationary bike but not a recumbent bike ❤
@kellyrudolph Жыл бұрын
I didn't know you had a channel about POTS! I'm your kayaking friend from the Cleveland & Catawba Boat Shows! Kayaking has changed my life with NCS & POTS. I have not passed out in over two years since I started paddling!
@DysautonomiaInformationNetwork
Жыл бұрын
Hi Kelly! I felt weird mentioning it haha but I do. I’m so glad kayaking has helped so much. I know they recommend rowing machines and the intensive kayaking you do has to be pretty similar. One of these days over summer I’ll have to try it out. See you in a couple months! 🙂
@kellyrudolph
Жыл бұрын
@DINET - Dysautonomia Information Network if you'd like to try kayaking just let me know. I've got 7 sea kayaks!
@davidrogers3920 Жыл бұрын
Thanks for the video! My POTS is fortunately only moderately bad compared to some people. I am able to do 30-60 min walks most mornings, and also do 30 mins of strength training, consisting of slow knee push-ups, hollow body ab exercises, bicep curls and dead lifts most days. Dr Shawn Baker recently advised me that one of the things I could try to improve my autonomic nervous system (that may be dysfunctional and giving my POTS) was exercise. I was already doing 1 set of the above exercises most days, but I decided to increase my strength training to be 3 sets of two of the above exercises each day, alternating which exercises I do from day-to-day. Surprisingly, I noticed straight away my fatigue in the afternoons was not as bad as it had previously been (I'm usually needing to lie down by lunchtime most days). The other thing that has helped me do more strength training is to listen to energising music whilst doing the Wim Hof Method breathing exercises before I do my 1st set of exercises. This usually gives me a significant boost in mental & physical energy as well as motivation to do my strength training. I'm visualising my body being healed whilst doing the Wim Hof breathing exercises.
@DysautonomiaInformationNetwork
Жыл бұрын
How incredibly different the symptoms and treatments are from one person to another. It is one of the most difficult things for people to understand. I have spoken to many POTS patients who have been helped by exercise and many others who are unable to stand because of the severity of their symptoms. We try and advise people to focus on doing whatever movement they can do without exaserbating their symptoms. For some it is as simple as flexing their ankles or raising their arms, for others it is going for a short walk. It is wonderful to hear that you are able to do so much. Thank you for sharing your experience and what has worked well for you. All the best.
@chrisduncan394310 ай бұрын
I developed POTS symptoms after having covid and exercise seems to be the one thing that has helped. Although it needs to be within a certain level to avoid making symptoms worse, while very gradually increasing duration. I'm pretty much back to normal but it feels like I have to keep exercising regularly to prevent a return of symptoms. POTS may not be deconditioning but, for me at least, getting to a higher level of fitness seems to make symptoms go away where even two weeks of being sedentary seems to make them return. It also helps to not focus on symptoms (like not monitoring my heart rate or reading forums all the time), since that creates a feedback loop that only makes things worse.
@melissaunruh7299
10 ай бұрын
How did you start exercising? Time per day? What type of exercise? I have pots post covid also. I have become reconditioned so I believe it is making things worse for me. I've babied this too long.
@chrisduncan3943
10 ай бұрын
@@melissaunruh7299 I started out about 20 minutes per day. On a recumbent bike or elliptical. I have a rowing machine but I don't like it as much. I try to do about 45 minutes 5 days per week now. 15 on the bike and about 30 on the elliptical. It's recommended to do recumbent exercise in the beginning with the goal to gradually move to upright exercise. I can now do "cardio" but early on I kept the intensity lower in the "fat burning" range according to my watch so I didn't get symptoms. I've also noticed it's important to be upright as much as possible during the day. Oversleeping or just spending too much time in bed can cause pots symptoms to return too. The Mayo Clinic has a pdf about long covid where it explained the importance of balance for recovery- not too much AND not too little. I agree with it. The whole spoons thing where you don't dare expend too much energy might keep some of us stuck. It's hard to find the right balance to gradually increase your fitness but it's probably helpful for recovery. I feel like having a better than average level of fitness can eliminate symptoms even if you still have the same underlying cause in your body.
@DysautonomiaInformationNetwork
10 ай бұрын
We can't stress enough how important movement is in terms of managing symptoms. How the blood moves through the body, how conditioned or deconditioned our muscles are and so on, all have an impact on symptoms. And before anyone reading this gets angry because they "can't exercise", please note that I wrote "movement". Many people with dysautonomia have exercise intolerance along with dyspnea and heat intolerance, so traditional exercise isn't something they can do without building up to it very slowly and some may never be able to do traditional exercise, however, movement IS something that we can do, regardless of condition. I agree that focusing constantly on monitoring HR, BP, etc can make things worse. However, forums and support groups, especially if you are offering help to other people can be very therapeutic. The more things a person can do to reach out of themselves and look for ways to be valuable, the better off you are to mentally and emotionally handle a chronic illness of any kind.
@helenarmstrong660
3 ай бұрын
Wow how did you start off just a few minutes a day??
@chrisduncan3943
3 ай бұрын
@@helenarmstrong660 zone 2 (60 to 70% of max HR) is a good place to start and aim toward the lower end. Yes maybe 10 minutes at first. Gradually add if possible
@WearySecret Жыл бұрын
Recombinant bike after one use gave me a week long flare. However I can walk a mile in 25 minutes. I'm at 6 months into a schedule of my own and I can Zumba 30 minutes plus 20 for warm up and cool down. I'm in my late 40s. I've given up on Dysautomia doctors.
@DysautonomiaInformationNetwork
Жыл бұрын
It sounds like you have really increased your tolerance for exercise. Good for you.
@tranquildoe
Жыл бұрын
Would love to hear more when you get a chance! How long could you go when you started? Awesome progress!
@DysautonomiaInformationNetwork
Жыл бұрын
@WS A viewer would like to know how far and how long you could go when you first started. See comment below.
@nancyhueber7735 Жыл бұрын
My usual challenge is resulting EDS pain from these activities (knees complaining after recumbent exercise bike, for example). I will lower the resistance!
@davidrogers3920
Жыл бұрын
Sorry to hear about your EDS pain. I've listened to the "Dr. Shawn Baker Podcast" episode on KZread called "Dawn Leighton, MD" where he interviews Dawn who has EDS & Dysautonomia. She is an emergency doctor who has been able to put her EDS & Dysautonomia into remission using diet and exercises. Maybe you could listen to what she said.
@spursstarwarssupernova Жыл бұрын
Exercise has only made everything worse for me. I did a ton of sports and still ended up with pots despite how fit I was. I exercised very consistently for a couple years and I have only gotten worse with time. I’m so tired of these doctors.
@reneedubuc3712
Жыл бұрын
Yes, exercise alone is often not enough. Learning about the neuroscience behind chronic pain and chronic fatigue and chronic fainting is crucial. I highly recommend finding an up-to-date pain management specialist who can educate you on the subject. There is also an app called “Curable.” It’s a great resource you can take advantage of on your own. I also highly recommend Lorimer Moseley’s lectures here on KZread. He’s a world renowned chronic pain researcher. I hope this helps you in your journey. I know it has helped me in mine!
@DysautonomiaInformationNetwork
Жыл бұрын
Unfortunately, being fit can't prevent a person from developing auto-immune disorders like POTS and many others. However, exercise in any form will help with managing your illness. If you can't exercise in the traditional sense, try doing very small things, like raising and lowering your arms. Any movement from a sitting position or even laying down is better than no movement at all. Try hard not to compare what you can or can't do now to what you did before. It will do you harm to make those comparisons. Do whatever you can do and be proud that you are doing your best.
@spursstarwarssupernova
Жыл бұрын
@@ENT683 Thank you so much for your replies. It’s nice to not feel like I’m crazy 😅
@DysautonomiaInformationNetwork
Жыл бұрын
@@spursstarwarssupernova You are certainly not crazy. Unfortunately, much of what was commented was wildly was out of context and made many statements that were very inaccurate. Let me explain again the point to the video and our response to your comment. It is incredibly frustrating to have taken good care of yourself and still end up ill. Unfortunately there is no way to prevent POTS or any other autoimmune illness. POTS frequently hits people who are young and athletic in fact. Some people can return to exercise and find that physical therapy works, for others that is not the case. But as I wrote before, movement isn't exercise and movement within what you can do, is better for your circulation, your mental state, lung capacity and many other systems in your body. Our website and all of our videos about symptoms state "exercise intolerance" as one of the most common. So there is no denying that people with this disorder have a difficult to impossible time trying to do traditional exercise, so you are certainly not crazy. This is not something you can exercise your way to a cure. But movement is good and everyone has some movement that they can do. For people with severe symptoms, we suggest starting by looking at the day to day movements you already do. For instance, if you brush your teeth, then you can raise your arm at least to that level. It may sound silly, but we suggest starting by moving your arm to that same level, at the same speed but try doing it 5 times in a row. If that's too much, then try 3 or 2 times and build from there. That is what we mean by movement. But there is no crazy in what you are experiencing.
@spursstarwarssupernova
Жыл бұрын
@@DysautonomiaInformationNetwork You deleted their comments 🥺 I understood where you were coming from I’m just tired of it being shoved down our throats when we DO those things and we are still blamed for “not doing enough” and our illness is still said to be our fault. It’s not so much frustration at your video/comments but at the treatment of dysautonomia in general, and the way that we can never seem to get actual help/treatment and instead of doctors admitting that there are none to be had, they give us basic “lifestyle changes” (what healthy people do anyway) and then blame us for still having severe symptoms.
@rachelscott54126 ай бұрын
they told me to take salt tablets and drink lots and lots of water.
@rachelscott54126 ай бұрын
I'm unable to exercise due to other major health issues that I have.
@tinyty6570 Жыл бұрын
Sigh wish I had the money for the bike.. I’m still trying to get a scooter for going out places like malls and things that could help me … bike second then to my list ✅
@rachelscott54126 ай бұрын
I was diagnosed with pots few months ago.
@markleonard4452 Жыл бұрын
Thanks for this great video What's the main reason exercise is believed to help pots? Is it because it can increase blood volume? I have a rower and I've been doing 15 mins, 3 times a week. I'll carefully try 4x30m as the dr suggested
@DysautonomiaInformationNetwork
Жыл бұрын
Great question. Yes, exercise is proven to expand blood volume and plasma. POT patients can have a smaller heart chamber size and lower heart muscle mass - both things are improved with exercise. Dyspnea is also improved with exercise. As discussed before on this channel, exercise intolerance is one of the major symptoms for people with POTS and other forms of dysautonomia. So this can frustrate patients to hear exercise recommended to help their symptoms. However, it has been shown in study after study that exercise does improve symptoms. So we encourage people to think of it as movement rather than exercise since many of us can't exercise in the traditional sense when we first start working on symptom management. To start it is important to understand that ALL movement is better than none So if you are ready for a rowing machine - GREAT! But if you aren't, don't give up - just do as much movement as you can and try to slowly increase your endurance over time. Best wishes and thanks for the great question.
@markleonard4452
Жыл бұрын
@@DysautonomiaInformationNetwork thank you so much for the reply. Thankfully, I have been tolerating a rowing machine well. I was only doing 15 mins. I did 30 on the weekend and was quite tired afterwards, so I will dial it back and work up slowly. For context, prior to POTS (from covid) I was an avid competitive runner.
@DysautonomiaInformationNetwork
Жыл бұрын
@@markleonard4452 That's great and better to dial it back and work up slowly than have a set back. I'm glad that you added the context of your activity level prior to POTS and COVID. That brings up a really important couple of points. First, it is very common to hear that pre-POTS (or other forms of dysautonomia) people were at high levels of activity/exercise. Personally I was a year-round, avid hiker, swam 2 miles every other day in the warm weather and my co-workers used to call me "flash" because I was a blur moving through my office. My story and yours are very common and I don't believe there has ever been a solid connection made between the development of autonomic dysfunction and prior activity levels. May be coincidence, but we certainly do hear about it often. The second important thing is that muscle memory is a real thing. So when we talk about movement or exercise being important for POTS treatment, it is really, really important to consider your body condition prior to becoming ill. Taking you as an example, if you were a competitive runner before, then as you try activities like a row machine, your muscles will begin to adapt faster than someone who never exercised prior to POTS. So it would be completely unrealistic for that person to start with a rowing machine. Movement is everything - whatever the level. Thank you so much for sharing your experience with others. And if you are dealing with Long-COVID, you may want to check out our site and section on Long-COVID under Information Resources. Keep us posted on your journey. Take care.
@anjolotito3854 ай бұрын
Thank you for your video i have dysautonomia post covid, I’m going to try with the bike, because i really feel bad almost all the time 🥲🥲
@DysautonomiaInformationNetwork
3 ай бұрын
I really hope it helps. Start slowly & take your time building. It can be frustrating because we just want to go back to how it was before, but know in advance that it is a slow, steady journey that works. Best of luck.
@JP-vx2sr2 ай бұрын
I have post exertional malaise, where i get profound neurological issues after exercising
@astonlance163511 ай бұрын
I would advise people with Pots to stop eating complexed Carbs..and over all try to eat very clean. That has made my symptoms very manageable. I didn't realize at first but eating really large meals or things like bread,pasta, rice etc..anything thats made from flour made my symptoms 50% worse. Try to eat fruits, vegetables and drink spring water with watermelon or cucumber blended in it[for better absorption]. I don't eat meat but im sure eating baked chicken or turkey would be best for those who are meat eaters without it causing the issues complex carbs do. I can say i noticed a very big difference within 3 days.. its because our small intestine uses alot more blood to break down complex foods and or larger Meals..mix that with pots and ur symptoms will be Hellish. So please eat clean and eat smaller meals and those could give you alot of relief.
@DysautonomiaInformationNetwork
11 ай бұрын
Good advice. Although not everyone has issue with flour, but your point is well taken that the issue is most certainly the amount of blood required to digest large meals and the impact that has on our overall circulatory system. You also mentioned cucumbers and watermelon, these are two items that pack a punch with electrolytes and give the benefit of slow absorption that you don't get in the same way from drinking your electrolytes. Although both watermelon and cucumbers can be put through a blender and made into delicious drinks as well. Great advice. I believe that nutrition is often minimized when people talk about things that can help people with all forms of dysautonomia, but it is a very important factor. Thanks so much for sharing.
@lenavoyles526
19 күн бұрын
Refined carbohydrates deplete thiamine because thiamine is needed for glucose metabolism. Thiamine deficiency leads to neurological symptoms. The symptoms of dysautonomia and the symptoms of Beriberi are essentially the same. Hence, the gut issues in dysautonomia due to malfunction of the Vagus nerve. See Lonsdale on thiamine deficiency.
@Melapoo Жыл бұрын
I'm trying to find a recumbent bike that folds up easily. I have no place to keep one out all the time, but if I could out it in a closet or corner when not using it that would be great. I just bought a house with a pool but didn't get a lot of use out of it this summer. Hoping for more use next summer. Doc discouraged row machine due to back issues I have.
@DysautonomiaInformationNetwork
Жыл бұрын
A pool can be a wonderful tool. It can allow movement without the worse aspects of heat intolerance, also it exercises your muscles without strain on your joints. Next summer start slowly with just walking in the water, or lifting one leg at a time for a few reps. Whatever you can manage. Water movement is a great form of exercise for anyone who has access to a pool or waterway.
@Honesty-pp4fy3 ай бұрын
For me i want to exercise but i get hurt easily like pulling muscles and hurting my legs but im used to laying down so my legs and leg muscles are always tense and wont stretch out like i cant touch my toes because my leg muscles are so compact from no exercise for a while but im sadly a kid so i cant do much like buy things etc 😭.
@DysautonomiaInformationNetwork
2 ай бұрын
Don't think of exercise, think only of small movements, gentle stretching. You won't get hurt and you will still get the benefits of circulation and muscle tone. There is a product called Exercise bands. They are like very big rubber bands. Start out with the lowest strength (resistance) and you can do the movements (stretches) laying down if you need to. You can stretch your legs and arms this way. Just one suggestion. If you can sit up in a chair, there is something called "Chair yoga" that can be helpful. With all of these things, you start with the smallest movements until they get easy to do. And don't do anything before you clear it with your doctor. But keep trying to find ways to move gently to help you stay as healthy as possible.
@zsds8455 Жыл бұрын
Could the wim hof method help pots?
@DysautonomiaInformationNetwork
Жыл бұрын
The Wim Hof method is said to help with anxiety, depression and pain management. In those ways it might help a person with POTS. However, the breathing steps used in this method can produce dizziness and hyperventilation, so it may be very difficult for a person with POTS to do. As far as "helping" POTS, the differences in the ANS of a person with POTS can't be changed through any form of meditation, the core dysfunction of the ANS remains. However, the exercises, just like yoga and other forms of meditation, can help with many of the symptoms of POTS and other chronic disorders. I would strongly recommend talking to your medical team before doing anything like this to be sure they feel it is safe for you.
@rachelscott54126 ай бұрын
Yes totally agree. My pots kicks my butt.
@lisamccullough5150 Жыл бұрын
Sorry but it’s true. POTS is deconditioning. Getting that reconditioned heart and body back is HARD. It hurts, it can make things worse before they get better but it is the ONLY way to rebuild a deconditioned body and that’s what POTS is.
@DysautonomiaInformationNetwork
Жыл бұрын
POTS is not a deconditioned body. In fact, the majority of people who develop POTS were fit and athletic before becoming ill. Deconditioning can occur AFTER illness when a person is at the height of symptom severity. But POTS is most definitely not a deconditioned body.
@lenavoyles526
19 күн бұрын
Only someone who has never had dysautonomia would dare to call it "decondition". POTS is far more common in top competitive marathoners than it is in the general population.
Пікірлер: 52
I have a standard stationary bike, and I put a chair behind it and pedal from behind. Just in case anyone has a stationary bike but not a recumbent bike ❤
I didn't know you had a channel about POTS! I'm your kayaking friend from the Cleveland & Catawba Boat Shows! Kayaking has changed my life with NCS & POTS. I have not passed out in over two years since I started paddling!
@DysautonomiaInformationNetwork
Жыл бұрын
Hi Kelly! I felt weird mentioning it haha but I do. I’m so glad kayaking has helped so much. I know they recommend rowing machines and the intensive kayaking you do has to be pretty similar. One of these days over summer I’ll have to try it out. See you in a couple months! 🙂
@kellyrudolph
Жыл бұрын
@DINET - Dysautonomia Information Network if you'd like to try kayaking just let me know. I've got 7 sea kayaks!
Thanks for the video! My POTS is fortunately only moderately bad compared to some people. I am able to do 30-60 min walks most mornings, and also do 30 mins of strength training, consisting of slow knee push-ups, hollow body ab exercises, bicep curls and dead lifts most days. Dr Shawn Baker recently advised me that one of the things I could try to improve my autonomic nervous system (that may be dysfunctional and giving my POTS) was exercise. I was already doing 1 set of the above exercises most days, but I decided to increase my strength training to be 3 sets of two of the above exercises each day, alternating which exercises I do from day-to-day. Surprisingly, I noticed straight away my fatigue in the afternoons was not as bad as it had previously been (I'm usually needing to lie down by lunchtime most days). The other thing that has helped me do more strength training is to listen to energising music whilst doing the Wim Hof Method breathing exercises before I do my 1st set of exercises. This usually gives me a significant boost in mental & physical energy as well as motivation to do my strength training. I'm visualising my body being healed whilst doing the Wim Hof breathing exercises.
@DysautonomiaInformationNetwork
Жыл бұрын
How incredibly different the symptoms and treatments are from one person to another. It is one of the most difficult things for people to understand. I have spoken to many POTS patients who have been helped by exercise and many others who are unable to stand because of the severity of their symptoms. We try and advise people to focus on doing whatever movement they can do without exaserbating their symptoms. For some it is as simple as flexing their ankles or raising their arms, for others it is going for a short walk. It is wonderful to hear that you are able to do so much. Thank you for sharing your experience and what has worked well for you. All the best.
I developed POTS symptoms after having covid and exercise seems to be the one thing that has helped. Although it needs to be within a certain level to avoid making symptoms worse, while very gradually increasing duration. I'm pretty much back to normal but it feels like I have to keep exercising regularly to prevent a return of symptoms. POTS may not be deconditioning but, for me at least, getting to a higher level of fitness seems to make symptoms go away where even two weeks of being sedentary seems to make them return. It also helps to not focus on symptoms (like not monitoring my heart rate or reading forums all the time), since that creates a feedback loop that only makes things worse.
@melissaunruh7299
10 ай бұрын
How did you start exercising? Time per day? What type of exercise? I have pots post covid also. I have become reconditioned so I believe it is making things worse for me. I've babied this too long.
@chrisduncan3943
10 ай бұрын
@@melissaunruh7299 I started out about 20 minutes per day. On a recumbent bike or elliptical. I have a rowing machine but I don't like it as much. I try to do about 45 minutes 5 days per week now. 15 on the bike and about 30 on the elliptical. It's recommended to do recumbent exercise in the beginning with the goal to gradually move to upright exercise. I can now do "cardio" but early on I kept the intensity lower in the "fat burning" range according to my watch so I didn't get symptoms. I've also noticed it's important to be upright as much as possible during the day. Oversleeping or just spending too much time in bed can cause pots symptoms to return too. The Mayo Clinic has a pdf about long covid where it explained the importance of balance for recovery- not too much AND not too little. I agree with it. The whole spoons thing where you don't dare expend too much energy might keep some of us stuck. It's hard to find the right balance to gradually increase your fitness but it's probably helpful for recovery. I feel like having a better than average level of fitness can eliminate symptoms even if you still have the same underlying cause in your body.
@DysautonomiaInformationNetwork
10 ай бұрын
We can't stress enough how important movement is in terms of managing symptoms. How the blood moves through the body, how conditioned or deconditioned our muscles are and so on, all have an impact on symptoms. And before anyone reading this gets angry because they "can't exercise", please note that I wrote "movement". Many people with dysautonomia have exercise intolerance along with dyspnea and heat intolerance, so traditional exercise isn't something they can do without building up to it very slowly and some may never be able to do traditional exercise, however, movement IS something that we can do, regardless of condition. I agree that focusing constantly on monitoring HR, BP, etc can make things worse. However, forums and support groups, especially if you are offering help to other people can be very therapeutic. The more things a person can do to reach out of themselves and look for ways to be valuable, the better off you are to mentally and emotionally handle a chronic illness of any kind.
@helenarmstrong660
3 ай бұрын
Wow how did you start off just a few minutes a day??
@chrisduncan3943
3 ай бұрын
@@helenarmstrong660 zone 2 (60 to 70% of max HR) is a good place to start and aim toward the lower end. Yes maybe 10 minutes at first. Gradually add if possible
Recombinant bike after one use gave me a week long flare. However I can walk a mile in 25 minutes. I'm at 6 months into a schedule of my own and I can Zumba 30 minutes plus 20 for warm up and cool down. I'm in my late 40s. I've given up on Dysautomia doctors.
@DysautonomiaInformationNetwork
Жыл бұрын
It sounds like you have really increased your tolerance for exercise. Good for you.
@tranquildoe
Жыл бұрын
Would love to hear more when you get a chance! How long could you go when you started? Awesome progress!
@DysautonomiaInformationNetwork
Жыл бұрын
@WS A viewer would like to know how far and how long you could go when you first started. See comment below.
My usual challenge is resulting EDS pain from these activities (knees complaining after recumbent exercise bike, for example). I will lower the resistance!
@davidrogers3920
Жыл бұрын
Sorry to hear about your EDS pain. I've listened to the "Dr. Shawn Baker Podcast" episode on KZread called "Dawn Leighton, MD" where he interviews Dawn who has EDS & Dysautonomia. She is an emergency doctor who has been able to put her EDS & Dysautonomia into remission using diet and exercises. Maybe you could listen to what she said.
Exercise has only made everything worse for me. I did a ton of sports and still ended up with pots despite how fit I was. I exercised very consistently for a couple years and I have only gotten worse with time. I’m so tired of these doctors.
@reneedubuc3712
Жыл бұрын
Yes, exercise alone is often not enough. Learning about the neuroscience behind chronic pain and chronic fatigue and chronic fainting is crucial. I highly recommend finding an up-to-date pain management specialist who can educate you on the subject. There is also an app called “Curable.” It’s a great resource you can take advantage of on your own. I also highly recommend Lorimer Moseley’s lectures here on KZread. He’s a world renowned chronic pain researcher. I hope this helps you in your journey. I know it has helped me in mine!
@DysautonomiaInformationNetwork
Жыл бұрын
Unfortunately, being fit can't prevent a person from developing auto-immune disorders like POTS and many others. However, exercise in any form will help with managing your illness. If you can't exercise in the traditional sense, try doing very small things, like raising and lowering your arms. Any movement from a sitting position or even laying down is better than no movement at all. Try hard not to compare what you can or can't do now to what you did before. It will do you harm to make those comparisons. Do whatever you can do and be proud that you are doing your best.
@spursstarwarssupernova
Жыл бұрын
@@ENT683 Thank you so much for your replies. It’s nice to not feel like I’m crazy 😅
@DysautonomiaInformationNetwork
Жыл бұрын
@@spursstarwarssupernova You are certainly not crazy. Unfortunately, much of what was commented was wildly was out of context and made many statements that were very inaccurate. Let me explain again the point to the video and our response to your comment. It is incredibly frustrating to have taken good care of yourself and still end up ill. Unfortunately there is no way to prevent POTS or any other autoimmune illness. POTS frequently hits people who are young and athletic in fact. Some people can return to exercise and find that physical therapy works, for others that is not the case. But as I wrote before, movement isn't exercise and movement within what you can do, is better for your circulation, your mental state, lung capacity and many other systems in your body. Our website and all of our videos about symptoms state "exercise intolerance" as one of the most common. So there is no denying that people with this disorder have a difficult to impossible time trying to do traditional exercise, so you are certainly not crazy. This is not something you can exercise your way to a cure. But movement is good and everyone has some movement that they can do. For people with severe symptoms, we suggest starting by looking at the day to day movements you already do. For instance, if you brush your teeth, then you can raise your arm at least to that level. It may sound silly, but we suggest starting by moving your arm to that same level, at the same speed but try doing it 5 times in a row. If that's too much, then try 3 or 2 times and build from there. That is what we mean by movement. But there is no crazy in what you are experiencing.
@spursstarwarssupernova
Жыл бұрын
@@DysautonomiaInformationNetwork You deleted their comments 🥺 I understood where you were coming from I’m just tired of it being shoved down our throats when we DO those things and we are still blamed for “not doing enough” and our illness is still said to be our fault. It’s not so much frustration at your video/comments but at the treatment of dysautonomia in general, and the way that we can never seem to get actual help/treatment and instead of doctors admitting that there are none to be had, they give us basic “lifestyle changes” (what healthy people do anyway) and then blame us for still having severe symptoms.
they told me to take salt tablets and drink lots and lots of water.
I'm unable to exercise due to other major health issues that I have.
Sigh wish I had the money for the bike.. I’m still trying to get a scooter for going out places like malls and things that could help me … bike second then to my list ✅
I was diagnosed with pots few months ago.
Thanks for this great video What's the main reason exercise is believed to help pots? Is it because it can increase blood volume? I have a rower and I've been doing 15 mins, 3 times a week. I'll carefully try 4x30m as the dr suggested
@DysautonomiaInformationNetwork
Жыл бұрын
Great question. Yes, exercise is proven to expand blood volume and plasma. POT patients can have a smaller heart chamber size and lower heart muscle mass - both things are improved with exercise. Dyspnea is also improved with exercise. As discussed before on this channel, exercise intolerance is one of the major symptoms for people with POTS and other forms of dysautonomia. So this can frustrate patients to hear exercise recommended to help their symptoms. However, it has been shown in study after study that exercise does improve symptoms. So we encourage people to think of it as movement rather than exercise since many of us can't exercise in the traditional sense when we first start working on symptom management. To start it is important to understand that ALL movement is better than none So if you are ready for a rowing machine - GREAT! But if you aren't, don't give up - just do as much movement as you can and try to slowly increase your endurance over time. Best wishes and thanks for the great question.
@markleonard4452
Жыл бұрын
@@DysautonomiaInformationNetwork thank you so much for the reply. Thankfully, I have been tolerating a rowing machine well. I was only doing 15 mins. I did 30 on the weekend and was quite tired afterwards, so I will dial it back and work up slowly. For context, prior to POTS (from covid) I was an avid competitive runner.
@DysautonomiaInformationNetwork
Жыл бұрын
@@markleonard4452 That's great and better to dial it back and work up slowly than have a set back. I'm glad that you added the context of your activity level prior to POTS and COVID. That brings up a really important couple of points. First, it is very common to hear that pre-POTS (or other forms of dysautonomia) people were at high levels of activity/exercise. Personally I was a year-round, avid hiker, swam 2 miles every other day in the warm weather and my co-workers used to call me "flash" because I was a blur moving through my office. My story and yours are very common and I don't believe there has ever been a solid connection made between the development of autonomic dysfunction and prior activity levels. May be coincidence, but we certainly do hear about it often. The second important thing is that muscle memory is a real thing. So when we talk about movement or exercise being important for POTS treatment, it is really, really important to consider your body condition prior to becoming ill. Taking you as an example, if you were a competitive runner before, then as you try activities like a row machine, your muscles will begin to adapt faster than someone who never exercised prior to POTS. So it would be completely unrealistic for that person to start with a rowing machine. Movement is everything - whatever the level. Thank you so much for sharing your experience with others. And if you are dealing with Long-COVID, you may want to check out our site and section on Long-COVID under Information Resources. Keep us posted on your journey. Take care.
Thank you for your video i have dysautonomia post covid, I’m going to try with the bike, because i really feel bad almost all the time 🥲🥲
@DysautonomiaInformationNetwork
3 ай бұрын
I really hope it helps. Start slowly & take your time building. It can be frustrating because we just want to go back to how it was before, but know in advance that it is a slow, steady journey that works. Best of luck.
I have post exertional malaise, where i get profound neurological issues after exercising
I would advise people with Pots to stop eating complexed Carbs..and over all try to eat very clean. That has made my symptoms very manageable. I didn't realize at first but eating really large meals or things like bread,pasta, rice etc..anything thats made from flour made my symptoms 50% worse. Try to eat fruits, vegetables and drink spring water with watermelon or cucumber blended in it[for better absorption]. I don't eat meat but im sure eating baked chicken or turkey would be best for those who are meat eaters without it causing the issues complex carbs do. I can say i noticed a very big difference within 3 days.. its because our small intestine uses alot more blood to break down complex foods and or larger Meals..mix that with pots and ur symptoms will be Hellish. So please eat clean and eat smaller meals and those could give you alot of relief.
@DysautonomiaInformationNetwork
11 ай бұрын
Good advice. Although not everyone has issue with flour, but your point is well taken that the issue is most certainly the amount of blood required to digest large meals and the impact that has on our overall circulatory system. You also mentioned cucumbers and watermelon, these are two items that pack a punch with electrolytes and give the benefit of slow absorption that you don't get in the same way from drinking your electrolytes. Although both watermelon and cucumbers can be put through a blender and made into delicious drinks as well. Great advice. I believe that nutrition is often minimized when people talk about things that can help people with all forms of dysautonomia, but it is a very important factor. Thanks so much for sharing.
@lenavoyles526
19 күн бұрын
Refined carbohydrates deplete thiamine because thiamine is needed for glucose metabolism. Thiamine deficiency leads to neurological symptoms. The symptoms of dysautonomia and the symptoms of Beriberi are essentially the same. Hence, the gut issues in dysautonomia due to malfunction of the Vagus nerve. See Lonsdale on thiamine deficiency.
I'm trying to find a recumbent bike that folds up easily. I have no place to keep one out all the time, but if I could out it in a closet or corner when not using it that would be great. I just bought a house with a pool but didn't get a lot of use out of it this summer. Hoping for more use next summer. Doc discouraged row machine due to back issues I have.
@DysautonomiaInformationNetwork
Жыл бұрын
A pool can be a wonderful tool. It can allow movement without the worse aspects of heat intolerance, also it exercises your muscles without strain on your joints. Next summer start slowly with just walking in the water, or lifting one leg at a time for a few reps. Whatever you can manage. Water movement is a great form of exercise for anyone who has access to a pool or waterway.
For me i want to exercise but i get hurt easily like pulling muscles and hurting my legs but im used to laying down so my legs and leg muscles are always tense and wont stretch out like i cant touch my toes because my leg muscles are so compact from no exercise for a while but im sadly a kid so i cant do much like buy things etc 😭.
@DysautonomiaInformationNetwork
2 ай бұрын
Don't think of exercise, think only of small movements, gentle stretching. You won't get hurt and you will still get the benefits of circulation and muscle tone. There is a product called Exercise bands. They are like very big rubber bands. Start out with the lowest strength (resistance) and you can do the movements (stretches) laying down if you need to. You can stretch your legs and arms this way. Just one suggestion. If you can sit up in a chair, there is something called "Chair yoga" that can be helpful. With all of these things, you start with the smallest movements until they get easy to do. And don't do anything before you clear it with your doctor. But keep trying to find ways to move gently to help you stay as healthy as possible.
Could the wim hof method help pots?
@DysautonomiaInformationNetwork
Жыл бұрын
The Wim Hof method is said to help with anxiety, depression and pain management. In those ways it might help a person with POTS. However, the breathing steps used in this method can produce dizziness and hyperventilation, so it may be very difficult for a person with POTS to do. As far as "helping" POTS, the differences in the ANS of a person with POTS can't be changed through any form of meditation, the core dysfunction of the ANS remains. However, the exercises, just like yoga and other forms of meditation, can help with many of the symptoms of POTS and other chronic disorders. I would strongly recommend talking to your medical team before doing anything like this to be sure they feel it is safe for you.
Yes totally agree. My pots kicks my butt.
Sorry but it’s true. POTS is deconditioning. Getting that reconditioned heart and body back is HARD. It hurts, it can make things worse before they get better but it is the ONLY way to rebuild a deconditioned body and that’s what POTS is.
@DysautonomiaInformationNetwork
Жыл бұрын
POTS is not a deconditioned body. In fact, the majority of people who develop POTS were fit and athletic before becoming ill. Deconditioning can occur AFTER illness when a person is at the height of symptom severity. But POTS is most definitely not a deconditioned body.
@lenavoyles526
19 күн бұрын
Only someone who has never had dysautonomia would dare to call it "decondition". POTS is far more common in top competitive marathoners than it is in the general population.