Our 35' year old son got new strain of Covid for a second time in November 21' directly from new plant manager who came directly from Central America, within six weeks his life went to hell. No more sleep and he was admitted to Five psychiatric hospitals. He was pumped full of dangerous narcotics which did absolutely nothing. He lost wife, family, job, house and now faces jail time. I knew back in December 21 this was Long Covid but no one, no one understood. 16 months later he's finnaly sleeping and regained taste and smell. Only comfort is knowing he wasn't insane..he was infected.
Hi Richard, thanks for your post. I'm 34 and in a similar situation, just got pumped with Ketamine, and Naltrexone as some docs assumed my CFS symptoms were psychosympatic. Things got worse though.due to side affects. I also still don't have my sense of smell and taste 3 years post infection - my I ask what has helped your son to regain taste/smell? Any specific medication? Thanks a lot!
there definitely is a difference between CFS fatigue and sleepiness, sometimes I feel very fatigued, sometimes I feel fatigued and very sleepy as well, they feel very different.
Evening showers and regular bedtime and wakeup time were ofcouse in the standard recommendations given by my doctors. I've had three years to experiment on this. These don't work and instead make sleep worse for me. And worse and worse and worse Evening showers actually wake me by keeping me too warm for hours and it takes my body much longer to be ready to sleep. Regular sleep hours. The inconsistancy of being over tired and sometimes having more sleep which is what i have with that approach makes it more difficult to full asleep. What has actually helped my sleep the most, even moVing me to more normal sleep timing and sleep quantity, is getting enough sleep whenever I can and whenever I need it. IOW, the exact opposite approach moves my night time sleep towards being more normal. I've prioritized sleep over everything else - whenever my body wants and is able to sleep, I sleep. With my approach, my time of falling asleep can get messed up (became later), but not as much as when I was so overtired. I have also taken a lot more naps. Even with naps at any time of day, my sleep timing has been much more consistant.
Twenty years now of CFS. I was diagnosed with moderate sleep apnea about two years after I got sick. Consistently wearing my CPAP machine made no difference in most of my simptoms other than decreasing the headaches from CFS. I went from extremely fit to morbidly obese within two years of losing my ability to exercise. Recovering my metabolic health by going Keto (see my before and after photo) did make a big difference in sleep and reduced my symptoms but was sure not the cure. I lost 70 pounds without one lick of exercise by the way.
In the sleep app, it would be nice to have a few user designated behaviors. Ex. I'm experimenting with my sleeping meds. If I could track how much gabapentin I take or if I take another medication, that would be useful. I'd also like to track physical and cognitive exertion - maybe a scale of 0,1, 2 or 0.1,2,3.
I'm not sure how much it has affected me since I had many of the symptoms being caused by who knows what long before COVID. My loss of smell and taste are the only things that are definitely from COVID, but I am having other things that aren't listed under the post-COVID symptoms that I think are due to it. I have a rage attacks all of a sudden over small things. My trunk gets really warm while the rest of me is a normal temp. I have dyshidrotic eczema that refuses to stop coming back.
Unbelievable we can’t figure out anything to fix or at least help the non restorative unrefreshed sleep. They seem to have no clue and can’t speculate on meds that may actually help. I’ve seen no studies trials
11 minutes before you the presentation starts proper 😔 which is a shame because you lose people early in the presentation...then 20 minutes to the crux of unrefreshing sleep where you hit an important point re objective correlates. BUT you talk about best time to undertake GET at 26 minutes and completely lost me... Not cool... Unacceptable given the harm it's caused. ... Im not prepared to finish this on this basis...
Our 35' year old son got new strain of Covid for a second time in November 21' directly from new plant manager who came directly from Central America, within six weeks his life went to hell. No more sleep and he was admitted to Five psychiatric hospitals. He was pumped full of dangerous narcotics which did absolutely nothing. He lost wife, family, job, house and now faces jail time. I knew back in December 21 this was Long Covid but no one, no one understood. 16 months later he's finnaly sleeping and regained taste and smell. Only comfort is knowing he wasn't insane..he was infected.
Das tut mir sehr leid für Ihren Sohn.
Liebe Grüße, bin auch an CFS/ME erkrankt. ❤
Hi Richard, thanks for your post. I'm 34 and in a similar situation, just got pumped with Ketamine, and Naltrexone as some docs assumed my CFS symptoms were psychosympatic. Things got worse though.due to side affects. I also still don't have my sense of smell and taste 3 years post infection - my I ask what has helped your son to regain taste/smell? Any specific medication? Thanks a lot!
I have CFS and I feel fatigued and horrible every day, but *not* sleepy. Is this "unrefreshing sleep", or not?
For me, unrefreshing sleep is waking in the morning feeling as tired/sleepy as I was when I went to bed the night before.
there definitely is a difference between CFS fatigue and sleepiness, sometimes I feel very fatigued, sometimes I feel fatigued and very sleepy as well, they feel very different.
Ich kann das Alles kaum noch unterscheiden.
Was ist was … 🙈
If you don’t feel refreshed and energised following a “normal” night of sleep, then that is unrefreshing sleep.
Evening showers and regular bedtime and wakeup time were ofcouse in the standard recommendations given by my doctors. I've had three years to experiment on this. These don't work and instead make sleep worse for me. And worse and worse and worse
Evening showers actually wake me by keeping me too warm for hours and it takes my body much longer to be ready to sleep.
Regular sleep hours. The inconsistancy of being over tired and sometimes having more sleep which is what i have with that approach makes it more difficult to full asleep.
What has actually helped my sleep the most, even moVing me to more normal sleep timing and sleep quantity, is getting enough sleep whenever I can and whenever I need it. IOW, the exact opposite approach moves my night time sleep towards being more normal. I've prioritized sleep over everything else - whenever my body wants and is able to sleep, I sleep.
With my approach, my time of falling asleep can get messed up (became later), but not as much as when I was so overtired. I have also taken a lot more naps. Even with naps at any time of day, my sleep timing has been much more consistant.
Try looking into Dr. Stasha Gominak and her sleep program. It's simple and seems to be highly effective.
Twenty years now of CFS. I was diagnosed with moderate sleep apnea about two years after I got sick. Consistently wearing my CPAP machine made no difference in most of my simptoms other than decreasing the headaches from CFS. I went from extremely fit to morbidly obese within two years of losing my ability to exercise. Recovering my metabolic health by going Keto (see my before and after photo) did make a big difference in sleep and reduced my symptoms but was sure not the cure. I lost 70 pounds without one lick of exercise by the way.
I wish you would interview me about insomnia and ME.
In the sleep app, it would be nice to have a few user designated behaviors. Ex. I'm experimenting with my sleeping meds. If I could track how much gabapentin I take or if I take another medication, that would be useful. I'd also like to track physical and cognitive exertion - maybe a scale of 0,1, 2 or 0.1,2,3.
Thank you!
Post covid I get very little restful sleep. Racing thoughts. Breathwork helps reduce some panicky thoughts but doesnt gain me more rest.
We need a treatment STAT on the unrefreshing sleep. People going mad. I use to love sleeping.
I had severe insomnia during and it lasted for a year 3 years on I still have disturbed sleep but better
cannabis candy with THC and CBN: worth a try
I'm not sure how much it has affected me since I had many of the symptoms being caused by who knows what long before COVID. My loss of smell and taste are the only things that are definitely from COVID, but I am having other things that aren't listed under the post-COVID symptoms that I think are due to it. I have a rage attacks all of a sudden over small things. My trunk gets really warm while the rest of me is a normal temp. I have dyshidrotic eczema that refuses to stop coming back.
So, nothing helpful for sleep. Got it.
Unbelievable we can’t figure out anything to fix or at least help the non restorative unrefreshed sleep. They seem to have no clue and can’t speculate on meds that may actually help. I’ve seen no studies trials
what is the name of the app?
SleepScore
11 minutes before you the presentation starts proper 😔 which is a shame because you lose people early in the presentation...then 20 minutes to the crux of unrefreshing sleep where you hit an important point re objective correlates.
BUT you talk about best time to undertake GET at 26 minutes and completely lost me... Not cool... Unacceptable given the harm it's caused. ... Im not prepared to finish this on this basis...