Anybody go from steady pem relationship to more up and down?

[bensmith]

before i was just steady misery. Now i have some good moments and mostly bad. But still its much different, i can feel somewhat ok sometimes. And then bad and then back to ok in like short amounts of time. Its like a brown out.

i think the very worse parts are mabyr worse? Anyway, anybody have this? I think its from
The meds im always rotating in and out. But its not just a meds thing!

 

[Alvin2]

I found it took a long time to understand the pattern of my PEM and even more time to understand how to feel it coming, how to avoid it and if it could not be avoided how to work it as best i could.
And how to recover. In my case a specific type of protein powder helps recovery/minimizes duration.

Its still not 100%, last week i had a couple days of relatively mild PEM for no reason, i hadn't done anything yet it came on and lasted a couple days. But this is not common for me, normally its an action/reaction thing.

 

[bensmith]

@Alvin2 yeah im still not being as good a boy as i should be, its the meds i think. I cant imagine having no pem thats great! Im so limited i just have to get out of bed if i can which is pem city most of the time.

but its weird im less concervative lately but have some better moments.

sorry if I’m not making total sense. I’m out of it atm.

 

[Wolfcub]

I get a really strange up-and-down thing which I call "eye of the storm" and I have NO idea why or how it happens. This has gone on for 3 years.
Everything is following a sort of pattern....PEM, and all, and then suddenly, out of the blue, I feel fine. Like my old normal self. That can sometimes last a few hours, or an hour or two.
But in 3 years there have also been complete days when I have felt like that.
It's not just okay-ish, it's completely 100% normal like I used to feel prior to March 2018.

I always know it's not going to last but it truly feels like I am better when it happens. Just like something, somewhere has switched something off suddenly. Even if it's only for an hour.

I can't link it to anything at all, and not even to having rested. It happens without rhyme or reason. It's almost supernatural. I always hold out hope for the next time it will happen. Those are precious times. I can literally do anything then. But those times are quite rare really.

Weirdly, I got a few days lke that just after recovery from Covid too. Goodness knows what it is.

 

[bensmith]

I get a really strange up-and-down thing which I call "eye of the storm" and I have NO idea why or how it happens. This has gone on for 3 years.
Everything is following a sort of pattern....PEM, and all, and then suddenly, out of the blue, I feel fine. Like my old normal self. That can sometimes last a few hours, or an hour or two.
But in 3 years there have also been complete days when I have felt like that.
It's not just okay-ish, it's completely 100% normal like I used to feel prior to March 2018.

I always know it's not going to last but it truly feels like I am better when it happens. Just like something, somewhere has switched something off suddenly. Even if it's only for an hour.

I can't link it to anything at all, and not even to having rested. It happens without rhyme or reason. It's almost supernatural. I always hold out hope for the next time it will happen. Those are precious times. I can literally do anything then. But those times are quite rare really.

Weirdly, I got a few days lke that just after recovery from Covid too. Goodness knows what it is.

Yes this sounds very familiar, its strange! Its preferable to w steady sludge i had at least now i ahve random moments of sunshine. Its so strange though, like you it seems indiependent.

 

[bensmith]

Happened again this morning. From feeling good(what?) to feeling near death and back in under a min. Weird.

 

[panckage]

I think I have the same thing. I think of it like the surface of the ocean. If it's flat there are no ups and downs. When there are big waves then I have big ups and downs.

My ideal functioning seems to be somewhere in the middle. Generating a small amount of PEM helps me rest better in my downtime and allows me to have better high points as well.

Its all a delicate balance. If I do too much much I get the wired but tired feeling and seemingly get stuck which can take weeks or longer to get out of it.

Having to support myself with irregular part time work(while doing the good ol pretend I'm not sick routine) makes things really difficult to balance.

 

[bensmith]

@panckage interestint didnt consider wired but tired, i dont think its that but im still new so not exactly sure.

 

[Reading_Steiner]

you're still in the first 2 years of the disease right ? things seem to be more volatile then, then I think the body can reach a new equillibrium. Some would say that there are predestined categories though.. mild, moderate or severe and its just a matter of time to find out which type you are, possibly it varies depending on genetics. Do you differentiate between crashes and PEM ? when I crash I struggle to play even the most unexciting video games like Farming Simulator or listen to a lot of music and I move extremely slowly and have bad orthostatic intolerance / weakness, but bad PEM is quite different .. I am still semi active but my stamina drops and I get all sorts of symptoms, high heart rate, bad memory irritability etc.

I was crashing a lot a few monthes ago but not at all now, I don't know why as my lifestyle hasn't changed much, I did remove a carpet from my bedroom that I was particularly allergic too though. PEM does vary and sometimes you get more or less than you expect from activities, you can learn some subtle signs though that its not a good idea to push things at certain times.

I know exactly what wolfcub means, but it very rarely happens to me ( sometimes just before a crash perplexingly ), its like a temporary remission, I actually experienced it yesterday / this morning, it was like I couldn't feel any of the pain or fatigue anymore, 75% drop in negative sensations, I felt light and springy and not weighed down and slow. I can still tell that exertion is damaging my body though, so its not like the disease mechanisms are all being switched off. It could be because changed sleeping pattern, caught asymptomatic coronavirus, rested more, or a result of overexercise ( which has lead to disease progression in the past * ).

The day before that I felt really rough and I probably looked like the living death to other people, didn't even feel like driving my mobility scooter but I had to go somewhere. I should be really ill still because I overexercised this week in a nightmare scenario where I was stuck in a field miles from anywhere, feet getting stuck in the mud, and had terrible flare up of all symptoms after, as you would expect.

 

[Wolfcub]

I should be really ill still because I overexercised this week in a nightmare scenario where I was stuck in a field miles from anywhere, feet getting stuck in the mud, and had terrible flare up of all symptoms after, as you would expect.

I certainly hear you! I get into those situations where I live too. These rural places are for tough people. I tough it out, then pay later. Not just with a few aches, tiredness etc, but with the old symptoms, and that can go on for days or longer. My bad......

 

[vision blue]

That's interesting about the hyopthesis of being in first 2 years of disease. When i first got this, there was a general decline and the PEM would wax and wane over a period of 9 months or so. Then came THe Crash; never had anything like it and was in bed for 3 days. But then i just about felt normal and immediatly tried resuming normal activities. Distinctly remember the first thing i did was to roll up and drag a really heavy carpet I had been eager to get rid of to the dumpster (and thought of nothign else the 3 days i was in bed with the carpet underneath the bed) . it was exhausting and i crashed again, never to recover...until 3 years ago, but that's a story unto its on right. But i often wonder - had i not did something so excessive wheh my body was trying to find its footing, would it have mattered? maybe i would not have crashed like that permanatly?

but here's a practical idea to see if you can push around when you get moments of feeling more normal: can you do something to distract your immune system? give it something more normal to do? if you have allergies, try giving yoruself an allergic reaction and see if that works (depending on whether your illness is mediated by Th1 or Th2). I do this somtimes when i want a break. Other times i felt normal was when my body was incubating a virus. Some viruses have the ability to turn off the immune system of its host for a little while to help evade immune detection. while that's going on, one can feel GREAT. And if you were a female, i'd opine about hormones to to this as well. other things that may turn off your immune system is falling in love...(if you can't manage that, aim for lust, may help for short periods)