JasonPerth
Senior Member
- Messages
- 127
Hi,
Just abit about me below and some questions i have!
Before 2016 i was an athlete who played high intensity running sports every 2nd day.
I would say between 2016-2021 i was probably a 6/10 looking back( post viral mecfs.)
I worked full time and by 2018 i found the energy within me (mentally aswell) to play golf weekly with Dad. It was hard to mentally get out and try because the previous sport event was after my onset of MECFS in 2016 when i didnt know what was wrong with me and i tried playing soccer after my viral symptoms went away (minus the fatigue and tiredness) and i recall collapsing on the field with concussion like symptoms and can just remember as soon as j started to run my body would just tell me to stop . i just couldnt use my “fast twitch” “running” muscles anymore.
But i could walk with some ease.
Anyway, skip to 2022 and i start very very slowly declining- it was unnoticeable at the time as i was cognitively fine and still working 9-5. But i started to cancel more and more events after work and socially i just couldnt keep up anymore with my usual routine i just wanted to get home after work and crasg. Eventually i overdid it at a party of a friends wedding i felt obligated to be at, and in the same week i got Rhinovirus (common cold)
Since that week, i have declined.
I have had 3 constant symptoms i never really had before on a daily basis.
Clicking Joints (all over)
a Noisy Rumbling Stomach /intestine
Have these 2 symptoms also come with anyone else as they declined from Full time work to full blown symptoms/housebound (when they may have never had the symptoms while being mild)
I just completely lost my appetite, slept 16 hours a day for 3-4 weeks and then when the rhinovirus symptoms went away- i went from sleeping 16 hours to not sleeping at all and all of a sudden i was at a new housebound baseline.
I lost about 1kg every week from 95-78kg even if i ate food i still had muscle wasting which and noises in stomach not due to hunger i never had before when i was mild and even when doing nothing physical at my desk job.
I understand the Fatigue getting worse with the baseline drop and the extra brain fog (still unsure if fatigue/brain fog are the samething or different) but what id like to know is if any of you also had the Joint clicking all over and the random stomach noises come suddenly, either during a decline in baseline or just in your MECFS journey.
The joint clicking is a sign of weakness snd i guess makes sense as ive lost about 10-15kg of muscle all over my body and im suddenly feeling very fragile. When i was mild i didnt feel fragile, just fatigued. Now i have a fragile,weak,boney feeling body and all of a sudden i dont even want to be cuddled when before i loved cuddles.
I went from like a 6/10 to a 1/10 in the space of a few weeks , physically and Cognitively.
Is it just as simple as - as your baseline drops, your symptoms rise? Including new ones i never experienced when mild?
I never recall any POTS or MCAS issues prior to deterioration aswell.
Its worth noting that the joint clicking have 0 pain and the stomach noises also have no pain
Ive never experienced pain in the 7 years with MECFS besides some nerve pin pain in my arms as i was loosing weight the past few months which sort of went away once the weight loss did aswell
Ive now been stuck at about 78kg and its now not going up or down
Sorry im stuck
Just abit about me below and some questions i have!
Before 2016 i was an athlete who played high intensity running sports every 2nd day.
I would say between 2016-2021 i was probably a 6/10 looking back( post viral mecfs.)
I worked full time and by 2018 i found the energy within me (mentally aswell) to play golf weekly with Dad. It was hard to mentally get out and try because the previous sport event was after my onset of MECFS in 2016 when i didnt know what was wrong with me and i tried playing soccer after my viral symptoms went away (minus the fatigue and tiredness) and i recall collapsing on the field with concussion like symptoms and can just remember as soon as j started to run my body would just tell me to stop . i just couldnt use my “fast twitch” “running” muscles anymore.
But i could walk with some ease.
Anyway, skip to 2022 and i start very very slowly declining- it was unnoticeable at the time as i was cognitively fine and still working 9-5. But i started to cancel more and more events after work and socially i just couldnt keep up anymore with my usual routine i just wanted to get home after work and crasg. Eventually i overdid it at a party of a friends wedding i felt obligated to be at, and in the same week i got Rhinovirus (common cold)
Since that week, i have declined.
I have had 3 constant symptoms i never really had before on a daily basis.
Clicking Joints (all over)
a Noisy Rumbling Stomach /intestine
Have these 2 symptoms also come with anyone else as they declined from Full time work to full blown symptoms/housebound (when they may have never had the symptoms while being mild)
I just completely lost my appetite, slept 16 hours a day for 3-4 weeks and then when the rhinovirus symptoms went away- i went from sleeping 16 hours to not sleeping at all and all of a sudden i was at a new housebound baseline.
I lost about 1kg every week from 95-78kg even if i ate food i still had muscle wasting which and noises in stomach not due to hunger i never had before when i was mild and even when doing nothing physical at my desk job.
I understand the Fatigue getting worse with the baseline drop and the extra brain fog (still unsure if fatigue/brain fog are the samething or different) but what id like to know is if any of you also had the Joint clicking all over and the random stomach noises come suddenly, either during a decline in baseline or just in your MECFS journey.
The joint clicking is a sign of weakness snd i guess makes sense as ive lost about 10-15kg of muscle all over my body and im suddenly feeling very fragile. When i was mild i didnt feel fragile, just fatigued. Now i have a fragile,weak,boney feeling body and all of a sudden i dont even want to be cuddled when before i loved cuddles.
I went from like a 6/10 to a 1/10 in the space of a few weeks , physically and Cognitively.
Is it just as simple as - as your baseline drops, your symptoms rise? Including new ones i never experienced when mild?
I never recall any POTS or MCAS issues prior to deterioration aswell.
Its worth noting that the joint clicking have 0 pain and the stomach noises also have no pain
Ive never experienced pain in the 7 years with MECFS besides some nerve pin pain in my arms as i was loosing weight the past few months which sort of went away once the weight loss did aswell
Ive now been stuck at about 78kg and its now not going up or down
Sorry im stuck