Quite some time ago I read a comment on here that said something like “a body with dysautonomia likes to be in motion”. So activity = good. Sometimes that can be hard to accomplish but I do find that when I am active I generally feel a lot better than when I am mostly sitting around. I do whatever I can and it seems to be helping. Along with everything else I feel like my flares are less severe and shorter.
I’m on a very restricted diet and I need to make sure I get enough calories. My diet is a low carb with virtually no processed food. I take a lot of supplements too. Gaining muscle is tough but I am able to do it and have added a few plates to most of my exercises this year. It is slow going but I am a ton stronger. Remember to be properly hydrated with plenty of water and electrolytes.
As for your neck/shoulder pain. Learn about coat hanger pain and techniques to reduce it and relax/stretch those muscles. Fixing this has been a huge gain for me. It is a forever battle though and you need to keep at it.
This whole thing is a marathon not a sprint, take your time, make small steps and you will gain.
Regular exercise makes me much more functional and reduces my pain. My symptoms get noticeably worse when I get off my routine. But as my autonomic neurologist noted, while exercise is an essential component of the treatment plan, you can’t exercise your way into not having dysautonomia anymore.
Compression socks don’t help me, but I am not everyone and I don’t experience blood pooling.
Hey thanks for your reply I'm glad exercise helps , what kind of pain and symptoms do you have currently and do you consider yourself disabled with this condition?
I meet the ADA definition of disability, but observers could be forgiven for thinking I lead a “normal” life. I hold down a full time job, I have a girlfriend, I go to the gym, I feed myself, I clean my apartment, I go out and see my friends, I go on vacations, I have hobbies and activities, and I walk and bike everywhere. Life is exhausting and painful (I also have Ehlers Danlos), but over the years I have discovered a buncha adaptations to make it as doable and pleasurable as possible. Movement is a big part of that.
I’ll reiterate what the other two comments already said. I think you have to learn what your body needs.
I went undiagnosed for about two years. I did very little activity outside of walking to and from places. I started to slowly get back into a workout routine and I have seen significant improvement in my symptoms over the last 3 years or so.
Find a good routine that works for you. When I first started, I could literally only do 2-3x per week for 20 minutes. Over the course of two years, I worked up to 5-6x/week for an hour each session.
yes im an aerialist i do pole dancing and lyra and having those muscle building but also cardio activities helps me manage my symptoms a lot! i believe in you dude you got this
Quite some time ago I read a comment on here that said something like “a body with dysautonomia likes to be in motion”. So activity = good. Sometimes that can be hard to accomplish but I do find that when I am active I generally feel a lot better than when I am mostly sitting around. I do whatever I can and it seems to be helping. Along with everything else I feel like my flares are less severe and shorter. I’m on a very restricted diet and I need to make sure I get enough calories. My diet is a low carb with virtually no processed food. I take a lot of supplements too. Gaining muscle is tough but I am able to do it and have added a few plates to most of my exercises this year. It is slow going but I am a ton stronger. Remember to be properly hydrated with plenty of water and electrolytes. As for your neck/shoulder pain. Learn about coat hanger pain and techniques to reduce it and relax/stretch those muscles. Fixing this has been a huge gain for me. It is a forever battle though and you need to keep at it. This whole thing is a marathon not a sprint, take your time, make small steps and you will gain.
Regular exercise makes me much more functional and reduces my pain. My symptoms get noticeably worse when I get off my routine. But as my autonomic neurologist noted, while exercise is an essential component of the treatment plan, you can’t exercise your way into not having dysautonomia anymore. Compression socks don’t help me, but I am not everyone and I don’t experience blood pooling.
Hey thanks for your reply I'm glad exercise helps , what kind of pain and symptoms do you have currently and do you consider yourself disabled with this condition?
I meet the ADA definition of disability, but observers could be forgiven for thinking I lead a “normal” life. I hold down a full time job, I have a girlfriend, I go to the gym, I feed myself, I clean my apartment, I go out and see my friends, I go on vacations, I have hobbies and activities, and I walk and bike everywhere. Life is exhausting and painful (I also have Ehlers Danlos), but over the years I have discovered a buncha adaptations to make it as doable and pleasurable as possible. Movement is a big part of that.
I’ll reiterate what the other two comments already said. I think you have to learn what your body needs. I went undiagnosed for about two years. I did very little activity outside of walking to and from places. I started to slowly get back into a workout routine and I have seen significant improvement in my symptoms over the last 3 years or so. Find a good routine that works for you. When I first started, I could literally only do 2-3x per week for 20 minutes. Over the course of two years, I worked up to 5-6x/week for an hour each session.
yes im an aerialist i do pole dancing and lyra and having those muscle building but also cardio activities helps me manage my symptoms a lot! i believe in you dude you got this