Jyoti Posted March 12, 2021 Report Share Posted March 12, 2021 I can't imagine anything more beneficent than qigong--it is gentle, moderate in pace, flowing, energy-moving. I love the idea of it--it just feels healing. But recently I have begun to suspect it is actually exacerbating my dysautonomia. There is, of course, the standing in one place that isn't good at all. But I have had a massive crash--bad enough to nearly send me to the ER--just a few days after re-starting a qigong practice. Seems kind of crazy, but as I am sure you all understand--when things go bad we have to comb through everything we have done, not done, eaten, drunk, thought.... When I google all I find are celebrations of how good it is for people in our situation. I was wondering if anyone here has any experiences with it--good, bad, indifferent--that they would care to share? Thanks! Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 12, 2021 Report Share Posted March 12, 2021 @Jyoti - I have POTS and my sister has an unknown dysautonomia, most likely SFN. We both have orthostatic and exercise intolerance. She does Qigong, actually teaches it. I would love to do it too but I cannot tolerate the being upright. I think the mediation part and the calmness of the exercise would be very beneficial for me to tone down the ANS, but the simple act of being upright sends me soaring. So - yes, I can see how it could cause a flare. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 12, 2021 Report Share Posted March 12, 2021 8 hours ago, Pistol said: @Jyoti - I have POTS and my sister has an unknown dysautonomia, most likely SFN. We both have orthostatic and exercise intolerance. She does Qigong, actually teaches it. I would love to do it too but I cannot tolerate the being upright. I think the mediation part and the calmness of the exercise would be very beneficial for me to tone down the ANS, but the simple act of being upright sends me soaring. So - yes, I can see how it could cause a flare. I think you could do it laying down as well even if that is not typical Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 12, 2021 Report Share Posted March 12, 2021 Thanks @RichGotsPots - I'll give that a try!!! Quote Link to comment Share on other sites More sharing options...
Sushi Posted March 12, 2021 Report Share Posted March 12, 2021 16 hours ago, Jyoti said: When I google all I find are celebrations of how good it is for people in our situation. I was wondering if anyone here has any experiences with it--good, bad, indifferent--that they would care to share? I tried it for a number of months but could not tolerate either the standing or the arm movements. The teacher even had me practice in a chair, but I could not tolerate it. Responses to it will be individual, but it didn’t work for me. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted March 13, 2021 Author Report Share Posted March 13, 2021 Thanks all for sharing your observations on this subject. It was affirming in that weird way we all recognize to know that something seen as universally good can be otherwise in our experience. Arm movements, arms over the head--yes @Pistol, @Sushi--these are definitely not good for me. And you are right @RichGotsPots, it can be done lying down. I think it can even be done mentally alone. If one wishes to. I think I was just feeling crazy--why would three days of 20 minute gentle and loving movement cause me to be considering the ER? So...thank you! Quote Link to comment Share on other sites More sharing options...
yogini Posted March 14, 2021 Report Share Posted March 14, 2021 On 3/13/2021 at 7:20 AM, Jyoti said: Thanks all for sharing your observations on this subject. It was affirming in that weird way we all recognize to know that something seen as universally good can be otherwise in our experience. Arm movements, arms over the head--yes @Pistol, @Sushi--these are definitely not good for me. And you are right @RichGotsPots, it can be done lying down. I think it can even be done mentally alone. If one wishes to. I think I was just feeling crazy--why would three days of 20 minute gentle and loving movement cause me to be considering the ER? So...thank you! Honestly I’m not a doctor but it seems unlikely that three days of doing this would send you to the ER, unless something else was already going on in your body. If y are already in a flare, then yes, anything can cause it to become much worse. Exercise and wellness activities are all about what works for your particular body and mind. There is no particular activity that’s benificent for all people. Personally floor yoga exercises worked very well for me, and I started with only 5 minutes. Starting small doesn’t hurt and if your symptoms aren’t triggered you can quickly build up. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 23, 2023 Report Share Posted December 23, 2023 @Jyoti, I know this is an old post, but I just *had* to reply. I went to a free tai chi class in the park with my boyfriend when I was in my early twenties, and that was when I experienced my first ever episode of orthostatic intolerance. I remember everyone else was having a nice time, but after about 15 minutes I began to feel presyncopal and had to go and sit out the rest of the class under a tree feeling rotten. I think it was holding out my arms for minutes at a time that did it. This was a physical stress that I didn’t experience in my everyday life at that time, so it revealed a weakness I didn’t know about. It wasn’t until I was 29 that I started having daily OI symptoms while doing normal activities. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted December 23, 2023 Author Report Share Posted December 23, 2023 That is so interesting @Sarah Tee. Awful, but interesting. So doing Tai Chi actually gave you a glimpse of what was brewing, exacerbated things in a way that offered a preview. Bummer! I have noticed that I tend to return to qigong every few months, convinced that it will be good for me this time. And time and time again, I get the same message. One day I will stop making the same mistake. I think that I like it intellectually, but my body just doesn't. Recently I have been doing a highly shortened routine--just a few minutes a day--and feeling proud of myself, but at the same time, noticing that my symptoms are on the rise. What? Again. And then yesterday, I was doing the 'knocking on the doors of life' where you swing your arms around like a twirling skirt and lightly bang on the kidneys and I was getting into it, my arms swinging with abandon, when one of my hands bashed into a piece of furniture. I now have a huge bruise on my hand, so ..... maybe I will receive the message this time? And...as @yogini said--it is good to find what works for you. Which isn't always easy to find. But if you do, stick to it! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 24, 2023 Report Share Posted December 24, 2023 @Jyoti, ouch! I hope your hand feels better soon. I used to do something similar. I had bowel surgery many years ago, and afterwards I had to avoid high-fibre food. One problem was “trendy lettuce”, the mixed leaves that can often be a bit tough when you get them in your basic sandwich shop. I’m sure they are lovely if you grow them yourself or get them in a little bistro in France. But I was working in an office, and would keep accidentally buying sandwiches for lunch that gave me a stomach ache all afternoon. I ended up putting a sticky note on my computer saying “Do not eat lettuce!” to remind myself. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted December 25, 2023 Author Report Share Posted December 25, 2023 It is sometimes hard to swim against a tide.....when the world all around says: eat lettuce to be healthy!!!! some part of the brain picks that up, even when it is clear that such is not the case for you personally. I have a notion that qigong is 'good for me' which resurfaces intermittently and it somehow eclipses all my experience! How very silly. Well...the big bruise on my hand may be enough to help me remember; kind of like your sticky note but on my body! Quote Link to comment Share on other sites More sharing options...
rondo Posted December 31, 2023 Report Share Posted December 31, 2023 Just saw this post and wanted to weigh in on a possible explanation for your observations that what should be beneficial makes us feel worse... 15 years ago, after going through cancer treatments, I was weak and had balance problems. I designed my own home exercise program to help me recover. It includes some Qi Gong, some PT exercises, and some yoga-ish moves that I found in a book about Taoist self care called The Complete Book of Self Healing. It kept me fit and flexible for years. Then more recently, as my dysautonomia has progressed (I have PAF) I found that although I could get through my exercise routine ok, I consistently felt horrible afterwards, so I reluctantly tried stopping. Sure enough, every time I go back to it, same response, so I finally just quit. It was pretty upsetting that after so many years, I could no longer tolerate it. Then I read somewhere that Qi Gong, Yoga, and meditation techniques in general boost parasympathetic function, while reducing the sympathetic response, which is exactly what the average person needs. My particular condition (admittedly it's considered a rare one, so I don't know how this may apply to others) involves very low sympathetic function with normal to increased vagal tone. So I think this is the mechanism in my case. I struggled with it for a long time before I got my recent diagnosis from a university autonomic disorders program. Well, I am still struggling, but at least we know what is going on and I am finally on some meds that help instead of making me worse, (like all the heart meds the cardiologists tried...) It is so important that we listen to what our bodies tell us and not be dissuaded by well-meaning people (especially physicians) who tell us what should be good for us and don't believe us when we report that interventions that help most people can actually make us worse. Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 31, 2023 Report Share Posted December 31, 2023 12 hours ago, rondo said: t is so important that we listen to what our bodies tell us and not be dissuaded by well-meaning people (especially physicians) who tell us what should be good for us and don't believe us when we report that interventions that help most people can actually make us worse. Amen to that! Quote Link to comment Share on other sites More sharing options...
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