This video is really important. When my mother (my only caregiver) heard this information by you, she understood better what I was living on my skin. I suggest you talk again about POTS, because many doctors as you know, don't know anything about POTS and PEM, too. Also doctors doing rehabilitation don't know anything about PEM and I think this is really dangerous. I suggest, based on my experience, speaking about doing breath rehabilitation before doing muscular rehabilitation!!! I repeat, many many doctors are unfortunately not prepared to help properly young people having these issues 🥲🙈 and we must search the appropriate professional for us, that don't dismiss us and that try to help, instead of giving us 'antidepressant' like water!
thanks a lot, I agree with every point, and after talking wiht you I am suggesting more and more to begin with yoga for breathing rehab as a first step. I will talk more about that, thank you!
Thank you Doc 🙏 I recommend to check out stasis.life website and their webapp stasisapp.com for useful lifestyle tips and breathing exercises. I think it’s still in use by Mt. Sinai’s Long Covid rehabilitation staff (see this 3yo interview with Dr. Putrino: https://m.youtube.com/watch?v=f0ehpsv-2TE )
In my personal experience of longCovid, diet is very important to avoid or mitigate crashes. I am not a child but I have been following a young patient, and I suspect in her case, too, certain foods could act as triggers: the wrong meal, for example rich in histamine, would lead to a crash comparable to what would come after heavy exertion (physical, mental, emotional), or at least to a transient but exhausting worsening of my baseline. Diet would never heal longCovid but we should ensure it does not work against it...
So, since you are talking about non-pharmacological interventions here, would it be possible to explore, for example, connections to MCAS and how to handle it?
Many thanks for starting this very interesting series !
Maybe you could also have a point on physiotherapy at large? From the most passive form (massage) to stretching and light exercise if PEM allows?
For my son, one or two sessions per week of massages and stretching of the neck and upper back have really helped relieve his headaches, even if temporarily. Also, our GP is afraid he must have lost a lot of muscle mass, but it is complicated when you need to choose between working for school for 30 minutes or exercising gently.
My physiotherapist told me that I haven't lost muscles (I was afraid, too. But I was doing yoga before becoming bed bound, even when I had slight pain, with a good yoga teacher that studied in India). I will write here better my experience with physiotherapists.
This video is really important. When my mother (my only caregiver) heard this information by you, she understood better what I was living on my skin. I suggest you talk again about POTS, because many doctors as you know, don't know anything about POTS and PEM, too. Also doctors doing rehabilitation don't know anything about PEM and I think this is really dangerous. I suggest, based on my experience, speaking about doing breath rehabilitation before doing muscular rehabilitation!!! I repeat, many many doctors are unfortunately not prepared to help properly young people having these issues 🥲🙈 and we must search the appropriate professional for us, that don't dismiss us and that try to help, instead of giving us 'antidepressant' like water!
thanks a lot, I agree with every point, and after talking wiht you I am suggesting more and more to begin with yoga for breathing rehab as a first step. I will talk more about that, thank you!
Thank you Doc 🙏 I recommend to check out stasis.life website and their webapp stasisapp.com for useful lifestyle tips and breathing exercises. I think it’s still in use by Mt. Sinai’s Long Covid rehabilitation staff (see this 3yo interview with Dr. Putrino: https://m.youtube.com/watch?v=f0ehpsv-2TE )
definitely !
In my personal experience of longCovid, diet is very important to avoid or mitigate crashes. I am not a child but I have been following a young patient, and I suspect in her case, too, certain foods could act as triggers: the wrong meal, for example rich in histamine, would lead to a crash comparable to what would come after heavy exertion (physical, mental, emotional), or at least to a transient but exhausting worsening of my baseline. Diet would never heal longCovid but we should ensure it does not work against it...
So, since you are talking about non-pharmacological interventions here, would it be possible to explore, for example, connections to MCAS and how to handle it?
Thank you for your research and outreach efforts!
I entirely agree that diet is very important, I am not expert on it, but will try to dive in more
Thank YOU Doc! 🙏🏻
Many thanks for starting this very interesting series !
Maybe you could also have a point on physiotherapy at large? From the most passive form (massage) to stretching and light exercise if PEM allows?
For my son, one or two sessions per week of massages and stretching of the neck and upper back have really helped relieve his headaches, even if temporarily. Also, our GP is afraid he must have lost a lot of muscle mass, but it is complicated when you need to choose between working for school for 30 minutes or exercising gently.
Thanks a lot!
My physiotherapist told me that I haven't lost muscles (I was afraid, too. But I was doing yoga before becoming bed bound, even when I had slight pain, with a good yoga teacher that studied in India). I will write here better my experience with physiotherapists.
Think you are great Dr D! Thank you so much for focusing on this disease.