Thank you for these episodes. For myself I’m improving after 2.5 yrs of long Covid/PEM/Me/CFS. But I’m still surprised how something emotional happening can take me down , after doing so well.
I was told that i was lazy… making it up… and in the end thought I was crazy. We are NOT any of those things and I hope to find a solution before things get too much for me to handle. Stay strong and keep searching for your deserved healing.
I have been dealing with this for a couple decades, so believe it is not particular to covid. I don’t have to feel like I’ve done too much to find me wiped out the day after for 2-5 days. I’m usually good at regulating my activities.
It is most definitely not particular to covid it is unique to ME/CFS, a disease which has been around a long time which can be triggered by many pathogens or other triggers. Apparently around 50% of people with Long Covid have developed ME/CFS and that is why they are experiencing PEM (myself included). Maybe you also have undiagnosed ME/CFS?? I think PEM usually involves not just extreme fatigue but a flare up of multiple symptoms. It truly is a dreadful experience!!
Same. I've felt this way my whole life. I remember as a kid during gym class being too sore to function from the previous gym class. Now at 38 I cleaned my kitchen yesterday and today I seriously feel like someone beat me severely with a broomstick and I know I'm going to feel this way for at least 4 more days.
I think this is a good idea. Just started making my way through. One thought - you know that many pwME are sensitive to stimuli and can't tolerate music. I found the music at the beginning very difficult. Please consider editing all music out.
Well...there IS a disclaimer that states that the video is primarily for medical providers and may contain stimulating images and movement. But it looks like there are subtitles that can be read or we can just skip the intro. I know you can't edit a video once it's on CZcams, so I know they can't just "edit out the music." But I'm glad they told us in the disclaimer to allow us to prepare to turn down the volume or just read the subtitles.
I'm sure that some of us have MECFS with ADHD type symptoms. I certainly do and would just end up getting bored without that music. We do have to consider everybody's individual idiosyncrasies and as was previously noted there was not only a disclaimer provided as a caveat but there is the option of turning down your own volume unless you are unable to. I have pretty frank misophonia personally and just really thrive on super loud crazy music in spite of being totally irritated by certain buzzers and bleeping things, and then there are smoke alarms ... I about ran through my house in a panic once when every smoke alarm in my house suddenly went off once.. I grabbed my two dogs, my car keys, my phone, moved the car out of my driveway and then settled down there and called the fire department rather than in the reverse order. So it truly takes different forms for different people.
seems when start to get it even talking makes me exhausted. I have had a persistent sore throat that no one can figure out where it came from or why I have it.
this is the best info series on PEM out there, amazing job!
Thank you for these episodes. For myself I’m improving after 2.5 yrs of long Covid/PEM/Me/CFS. But I’m still surprised how something emotional happening can take me down , after doing so well.
Thank you. I’ve been dealing with this for 8 years. Finally, someone understands!
I was told that i was lazy… making it up… and in the end thought I was crazy. We are NOT any of those things and I hope to find a solution before things get too much for me to handle.
Stay strong and keep searching for your deserved healing.
Thank you for these. very helpful.
I have been dealing with this for a couple decades, so believe it is not particular to covid. I don’t have to feel like I’ve done too much to find me wiped out the day after for 2-5 days. I’m usually good at regulating my activities.
Covid is not the only virus that triggers ME/CFS so it is possible a different virus triggered yours.
It is most definitely not particular to covid it is unique to ME/CFS, a disease which has been around a long time which can be triggered by many pathogens or other triggers. Apparently around 50% of people with Long Covid have developed ME/CFS and that is why they are experiencing PEM (myself included). Maybe you also have undiagnosed ME/CFS?? I think PEM usually involves not just extreme fatigue but a flare up of multiple symptoms. It truly is a dreadful experience!!
Same. I've felt this way my whole life. I remember as a kid during gym class being too sore to function from the previous gym class. Now at 38 I cleaned my kitchen yesterday and today I seriously feel like someone beat me severely with a broomstick and I know I'm going to feel this way for at least 4 more days.
Very nicely put together; thank you so much.
I think this is a good idea. Just started making my way through. One thought - you know that many pwME are sensitive to stimuli and can't tolerate music. I found the music at the beginning very difficult. Please consider editing all music out.
Well...there IS a disclaimer that states that the video is primarily for medical providers and may contain stimulating images and movement. But it looks like there are subtitles that can be read or we can just skip the intro. I know you can't edit a video once it's on CZcams, so I know they can't just "edit out the music." But I'm glad they told us in the disclaimer to allow us to prepare to turn down the volume or just read the subtitles.
You can just turn the volume down there at the beginning I would think.
I'm sure that some of us have MECFS with ADHD type symptoms. I certainly do and would just end up getting bored without that music. We do have to consider everybody's individual idiosyncrasies and as was previously noted there was not only a disclaimer provided as a caveat but there is the option of turning down your own volume unless you are unable to.
I have pretty frank misophonia personally and just really thrive on super loud crazy music in spite of being totally irritated by certain buzzers and bleeping things, and then there are smoke alarms ... I about ran through my house in a panic once when every smoke alarm in my house suddenly went off once..
I grabbed my two dogs, my car keys, my phone, moved the car out of my driveway and then settled down there and called the fire department rather than in the reverse order. So it truly takes different forms for different people.
So helpful to get excellent information regarding this when it's so difficult for people to understand what LTC people are going thru..bless you.
seems when start to get it even talking makes me exhausted. I have had a persistent sore throat that no one can figure out where it came from or why I have it.
Today it's the pitter, patter of my heart. On on a roll, but life goes on.
I have no idea how to find a physician who treats this.
Is there anything a primary doctor can do to diagnose, and if not what kind of specialist should be seen?