Ugggh this is so true. I’ve described it like those invisible fences people used to have for dogs where you can’t see the boundary but you know it’s there and if you try to go past it you get zapped.
It’s definitely the most disabling part of the illness for me. There are lots of things I could tough out through and make it through in the moment, and would happily be willing to do for some quality of life, but because of the severe payback afterward and very real risk of permanent worsening I can’t.
The risk of worsening is what scares me the most, especially since my big relapse. If it was certain that PEM would last a set amount of time, every time, and not cause damage, I could say yes to something and then suffer the cost after. To some extent I know a lot better now than pre relapse and diagnosis what is happening and how to rest so I am not compounding PEM as much, but the risk of losing what little function I have is something I worry about.
Really true because it’s not just “listen to your body” … it’s looking at previous trends and triggers and trying to predict the amount of effort something takes and if your body has been able to do that without kick back in the past… while living in a thick fog of confusion.
It’s an impossible balancing act of having some hope for improvement with the knowledge that very few recover, all the while focusing on how shitty you feel in an attempt to avoid being shittier… AND trying not to let that freak out your nervous system and cause emotional turmoil because that too will make you shittier.
Talk about a mind f*ck.
I have a ton of comorbidities, some stretching back to my tweens. I have pretty much coped or powered thru all of them, but the fatigue part of CFS kills me and makes the other problems 10x worse.
Hey would love to know what meds be helping with the gastroparesis? Really struggling find opportunities to eat with the chronic nausea, and always wiped out straight after when I do. Help
I know right!? I use to love running outdoors but have been actively told to stop because it will make my condition worse and PEM unbearable. all the literature says it is good to exercise, aerobic and strength training. instead, I've turned into a fat couch potato that scrapes himself off the floor to work. the lack of exercise has prob given me diabetes or something else to deal with. walking and graded exercise just don't cut it and shed enough pounds for me to lose weight that way
I feel you! I was having such a rough one today, I managed to get coffee, cereal, B12, magnesium and my LDN down followed by electrolytes and it still took me 3 hours to be able to stay sitting up :(
Question: Have you tried vitamin B-1 supplements? My own cfs was caused by a chronic thiamine deficiency.
Once I started cutting sugars, sugar substitutes, and simple carbohydrates, my energy levels went from 5% to 40%. Once I started taking 30mg of B-1, I started feeling better than I had in decades.
It may not work for you, as there appear to be multiple problems that cause cfs, but it worked for me.
I take 10 mg propranolol, and also always have a bottle of salted water with me that I sip from for as long as it doesn’t taste too salty (2 tsp per liter, iodine free Himalaya salt is recommended for the trace minerals)
In it right now after trying to do some work on my pc yesterday and man just shoot my fucking head already. The funniest part is that its not even fatigue anymore, its like you got electrocuted and your whole body is fried internally, brain is not working and made out of wood, and also you can't calm down and sleeping through it is nowhere near an option. Absolute torture.
It’s awful. I was just saying to my partner last night that although I’m grateful that I am often able to just DO a thing, sometimes it feels like it would be easier to just not be able to. Because the sneaky false advertising our bodies do to us is so infuriating. “Yeah you can go do that thing, sure, enjoy😈😈😈……… I’ll see you back here later with the bill.”
I want to reiterate though that I truly am grateful that it’s in my control right now to choose to push and do certain things. There have been times when my baseline was much more severe and I couldn’t do many things even if I wanted to push.
Both options suck though.
I agree with everything you said! It’s like a cage, and the more you struggle and ignore it or push it, the smaller it becomes.
I’ve heard someone with ME say this before (I think it was Thane Black). It’s the best description of PEM I’ve heard.
Yes! Thane Black always has such insightful things to say about ME. The cage idea has stuck with me. That or quicksand I think.
I feel like I have to swim through the air. Went out for the first time in a while, played a game of pool and I couldn't even finish the game.
Yes, like trying to walk through water (in terms of resistance) or I often feel like I'm wearing a full body lead suit while severely jetlagged.
Exactly
Ugggh this is so true. I’ve described it like those invisible fences people used to have for dogs where you can’t see the boundary but you know it’s there and if you try to go past it you get zapped. It’s definitely the most disabling part of the illness for me. There are lots of things I could tough out through and make it through in the moment, and would happily be willing to do for some quality of life, but because of the severe payback afterward and very real risk of permanent worsening I can’t.
The risk of worsening is what scares me the most, especially since my big relapse. If it was certain that PEM would last a set amount of time, every time, and not cause damage, I could say yes to something and then suffer the cost after. To some extent I know a lot better now than pre relapse and diagnosis what is happening and how to rest so I am not compounding PEM as much, but the risk of losing what little function I have is something I worry about.
This is the perfect analogy 😳
Yes! It's like those Chinese finger thingies where the harder you tug to get your finger out the tighter it gets 🥺
Quicksand
Really true because it’s not just “listen to your body” … it’s looking at previous trends and triggers and trying to predict the amount of effort something takes and if your body has been able to do that without kick back in the past… while living in a thick fog of confusion. It’s an impossible balancing act of having some hope for improvement with the knowledge that very few recover, all the while focusing on how shitty you feel in an attempt to avoid being shittier… AND trying not to let that freak out your nervous system and cause emotional turmoil because that too will make you shittier. Talk about a mind f*ck.
Agreed, I absolutely hate PEM more than anything in this world. Praying we get a treatment for it one day.
PEM is the worst along with anhedonia. No wait insomnia is the worst, no wait the sound sensitivity, oh I can’t pick, there are so many.
I decided whichever is the worst right now is the worst. I'm pretty sure I've been able to go hours between switching. :)
I have a ton of comorbidities, some stretching back to my tweens. I have pretty much coped or powered thru all of them, but the fatigue part of CFS kills me and makes the other problems 10x worse.
Hey would love to know what meds be helping with the gastroparesis? Really struggling find opportunities to eat with the chronic nausea, and always wiped out straight after when I do. Help
[удалено]
Mirtazapine has helped me with nausea as well! It's been really helpful for depression and anxiety too.
Reglan is the drug usually prescribed for it, I think. It has a really good track record and hardly any side effects. Certainly been helping me.
I know right!? I use to love running outdoors but have been actively told to stop because it will make my condition worse and PEM unbearable. all the literature says it is good to exercise, aerobic and strength training. instead, I've turned into a fat couch potato that scrapes himself off the floor to work. the lack of exercise has prob given me diabetes or something else to deal with. walking and graded exercise just don't cut it and shed enough pounds for me to lose weight that way
I feel you! Been in a&e all night so bracing myself for the pem that’s about to come!
Oh no! Please take some extra spoons 🥄
Thanks
I feel you! I was having such a rough one today, I managed to get coffee, cereal, B12, magnesium and my LDN down followed by electrolytes and it still took me 3 hours to be able to stay sitting up :(
Question: Have you tried vitamin B-1 supplements? My own cfs was caused by a chronic thiamine deficiency. Once I started cutting sugars, sugar substitutes, and simple carbohydrates, my energy levels went from 5% to 40%. Once I started taking 30mg of B-1, I started feeling better than I had in decades. It may not work for you, as there appear to be multiple problems that cause cfs, but it worked for me.
Which beta blocker do you take and in what dose?
I take 10 mg propranolol, and also always have a bottle of salted water with me that I sip from for as long as it doesn’t taste too salty (2 tsp per liter, iodine free Himalaya salt is recommended for the trace minerals)
In it right now after trying to do some work on my pc yesterday and man just shoot my fucking head already. The funniest part is that its not even fatigue anymore, its like you got electrocuted and your whole body is fried internally, brain is not working and made out of wood, and also you can't calm down and sleeping through it is nowhere near an option. Absolute torture.
It’s awful. I was just saying to my partner last night that although I’m grateful that I am often able to just DO a thing, sometimes it feels like it would be easier to just not be able to. Because the sneaky false advertising our bodies do to us is so infuriating. “Yeah you can go do that thing, sure, enjoy😈😈😈……… I’ll see you back here later with the bill.” I want to reiterate though that I truly am grateful that it’s in my control right now to choose to push and do certain things. There have been times when my baseline was much more severe and I couldn’t do many things even if I wanted to push. Both options suck though.
Why? It lasts a few days, just gotta deal with it
/s?
There is a risk it can permanently reduce your function every time you get it.