- Messages
- 11
Hello everyone!
Background: I have CFS for 9 years - after a mono-infection - and the first few years I was a 30 on the Bell scale and since 5 years, like a 40-45 - so I could study 3h a day (complex formulas) at my desk and walked ca. 5000-6000 steps throughout the day on average, the rest of the time I was lying on the couch and reading news etc. (screen time roughly 8h mostly reading, little TV etc.) plus the occasional dinner or drinks- but after the BioNTech vaccination a year ago I have somehow tranistioned: baseline on normal days is the same but I get like 30-50% bad days where I am more like a 30. on good days I am still around a 40… I have realised however that during lockdowns and covid I went on long walks like 30min plus after which I used to feel crappy - so I also had constant push and crash cycles ... long story short, 6 weeks ago I was with friends in Lisbon and had good days on which I walked like 20.000 steps per day, and had little sleep etc..the next day I was shattered, never felt so bad… since then, in the past 5 weeks, I only had bad days and they became progressively worse.. the problem is that in the following weeks I had friends over and I just kept pushing through the fatigue …so I would have a super bad day, on which I would typically just chill all day, but I was always out, walking, at dinner or lunch with my friends and was super cloudy and dizzy and maintained my ca. 4000 steps a day activity...it got so bad that two weeks ago I had to tell everyone to go home and I got full blown insomnia, couldnt sleep and since them am basically housebound... the Insomnia got so bad that I was bedbound and couldnt sleep was only in a halfdream like state…since last monday I have only rested a lot and the sleep has improved in the last 4 nights… still not great, but like chunks of 3-4hours of sleep totalling 7h, but I was also on seroquel 25mg.….anyways still feel like shit with brainfog and much more fatigued…am like 25 bell
yesterday went to the doctors and talked to him for like an hour and walked around quite a bit before and after and I think I had a crash again cause I couldnt sleep all night again - but also stopped the seroquel yday night so who knows..
now comes the interesting part... I didnt know about pacing in the past or POTS..so I bought a Fitbit to look at the total number of steps (as I walk quite a bit from my room to the kitchen etc. in my parents house … and I realised that I might have POTS…when I lie my heartrate is 65-75 but when I stand its around 95-105…I am also extremely sensitive to heat..more so in this crash…looking back on my CFS time I was always able to concentrate much better lying down…and I never liked sitting…also during hot summers when we had long dinners outside I would often feel quite cloudy mentally..always thought it was due to CFS, never felt fully dizzy or fainted though...
I am going to the doctor tomorrow and I ll ask him to prescribe me Mestinon and Midodrine.. the idea is that treating the POTS might help with the recovery?…plus aggressive resting for the next weeks ( I am currently lying in bed all day… have 20-30min sleep breaks every two hours and average like 1.5-2k steps during the day (going toilet, kitchen, terrace etc
- might be too much? but it feels ok, so not overly tiring…
anyways I m feeling very down…would love to hear stories of people with post MONO/viral fatigue that fucked up and had a major crash and recovered to baseline after a few months ( thats my question).. I did have big crashes in the past..though not as big as this one...from which I recovered after like 2-3 weeks without pacing, so actually maintaining activity levels .. tips etc. ideally from people who had similar symptoms pre-crash…please no horror stories..obv there is a negative bias in this forum as those that recover to “tolerable” levels are “living” life…
Background: I have CFS for 9 years - after a mono-infection - and the first few years I was a 30 on the Bell scale and since 5 years, like a 40-45 - so I could study 3h a day (complex formulas) at my desk and walked ca. 5000-6000 steps throughout the day on average, the rest of the time I was lying on the couch and reading news etc. (screen time roughly 8h mostly reading, little TV etc.) plus the occasional dinner or drinks- but after the BioNTech vaccination a year ago I have somehow tranistioned: baseline on normal days is the same but I get like 30-50% bad days where I am more like a 30. on good days I am still around a 40… I have realised however that during lockdowns and covid I went on long walks like 30min plus after which I used to feel crappy - so I also had constant push and crash cycles ... long story short, 6 weeks ago I was with friends in Lisbon and had good days on which I walked like 20.000 steps per day, and had little sleep etc..the next day I was shattered, never felt so bad… since then, in the past 5 weeks, I only had bad days and they became progressively worse.. the problem is that in the following weeks I had friends over and I just kept pushing through the fatigue …so I would have a super bad day, on which I would typically just chill all day, but I was always out, walking, at dinner or lunch with my friends and was super cloudy and dizzy and maintained my ca. 4000 steps a day activity...it got so bad that two weeks ago I had to tell everyone to go home and I got full blown insomnia, couldnt sleep and since them am basically housebound... the Insomnia got so bad that I was bedbound and couldnt sleep was only in a halfdream like state…since last monday I have only rested a lot and the sleep has improved in the last 4 nights… still not great, but like chunks of 3-4hours of sleep totalling 7h, but I was also on seroquel 25mg.….anyways still feel like shit with brainfog and much more fatigued…am like 25 bell
yesterday went to the doctors and talked to him for like an hour and walked around quite a bit before and after and I think I had a crash again cause I couldnt sleep all night again - but also stopped the seroquel yday night so who knows..
now comes the interesting part... I didnt know about pacing in the past or POTS..so I bought a Fitbit to look at the total number of steps (as I walk quite a bit from my room to the kitchen etc. in my parents house … and I realised that I might have POTS…when I lie my heartrate is 65-75 but when I stand its around 95-105…I am also extremely sensitive to heat..more so in this crash…looking back on my CFS time I was always able to concentrate much better lying down…and I never liked sitting…also during hot summers when we had long dinners outside I would often feel quite cloudy mentally..always thought it was due to CFS, never felt fully dizzy or fainted though...
I am going to the doctor tomorrow and I ll ask him to prescribe me Mestinon and Midodrine.. the idea is that treating the POTS might help with the recovery?…plus aggressive resting for the next weeks ( I am currently lying in bed all day… have 20-30min sleep breaks every two hours and average like 1.5-2k steps during the day (going toilet, kitchen, terrace etc
- might be too much? but it feels ok, so not overly tiring…anyways I m feeling very down…would love to hear stories of people with post MONO/viral fatigue that fucked up and had a major crash and recovered to baseline after a few months ( thats my question).. I did have big crashes in the past..though not as big as this one...from which I recovered after like 2-3 weeks without pacing, so actually maintaining activity levels .. tips etc. ideally from people who had similar symptoms pre-crash…please no horror stories..obv there is a negative bias in this forum as those that recover to “tolerable” levels are “living” life…