I have those very nasty PEM. Each time i had a PEM and i didn't even push myself my function decreased so much that it felt it was like a major evenement in my life as a stroke or a car accident. I can't get out of my energy enveloppe even for 10 seconds. I really feel that the next big PEM could lead me to the grave. I don't know if anyone feels the same?
Martin aka paused||M.E.
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Same.
ljimbo423
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I'm sorry your so sick. I was mostly bedridden for several years and often felt like I was dying. I think that was caused by low grade neuroinflammation that ME/CFS researcher Jarred Younger has found.
Which triggers the sickness response in the brain and feels just like a severe flu.
The good news is there isn't any permanent damage that Jarred could find. Based on my experience, this is true. I've improved my health from severe for several years to mostly mild for several years now.
So I didn't have any permanent damage. Even though I truly felt like I was dying more times than I can count. My sickness response is still being activated in the brain and causing flu-like symptoms but they are much, much milder now.
I hope this helps.
Too much for a neglected disease. This drives me nuts. Even when you read about PEM the description given in the majority of articles is too "soft". PEM is like a bomb exploding inside of the body. It's no Joke.
I really hope it could get better, and the fact that it could be reversible is the only thing giving me hope. Because i'm nit living anymore, i am just surviving.
ljimbo423
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I was also just surviving for several years. It's horrendous and god-awful. And the fear I lived in, was beyond imagination for most people but you probably know it all too well.
I'm convinced there are ways to improve, because I and others have done it. Although there are many "triggers" that cause ME/CFS, I think there is just one primary cause for most of us.
For myself, I've learned that dysbiosis and leaky gut are stimulating my immune system and causing low grade neuroinflammation, triggering the sickness response and causing most of my worst symptoms.
Working on these and neuroinflammation, has lead me from severe to mostly mild. All I need to do to become mostly bedridden again, within 1-2 weeks, is increase my intake of starchy carbs to about 150-175 gms a day. Starchy carbs are the main food for inflammatory bacteria in the gut.
Lieselotte
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I even think the word "surviving" is too active of a word. Sometimes there isn't even the energy to survive, just ride the wave and live in a waking coma.
Sending you prayers
bensmith
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Def. : (
Rufous McKinney
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I"m in a Bit Better Baseline from massive amounts of not doing. The moment I start doing small external things, I pay and go downhill.
I also go downhill virtually every time I try to detox or get to the other side of something involving the lymph and CSF brain cleansing issues.
I experienced some very sobering worsenings of the ME, and some of those acute symptoms have gotten to be less severe with this massive rest.
...I've seen that: I can get much much worse and its a place I dont' want to enter again.
But i"m doing- nothing, as in, just about virtually- nothing.
I also go downhill virtually every time I try to detox or get to the other side of something involving the lymph and CSF brain cleansing issues.
I experienced some very sobering worsenings of the ME, and some of those acute symptoms have gotten to be less severe with this massive rest.
...I've seen that: I can get much much worse and its a place I dont' want to enter again.
But i"m doing- nothing, as in, just about virtually- nothing.
That's a very valid point. The descriptions of PEM really should be stronger, explaining that it's like having severe flu symptoms, possibly every single day, for years. Anyone want to write up an appropriately strong description to pass along to whichever committee might use it?
BTW, when I read the title my first thought was "No, it doesn't feel like living on a skinny little thread. It's more like being on a road ... as roadkill."
For Eddy M and others in the same situation, maybe it will help to know that PEM is not permanent degradation, and it is possible to switch out of it, rapidly and completely. Finding a way to switch that is certainly a challenge (especially when you can't even get out of bed or think clearly), but it is at least possible. Cumin worked for me and for a few others. Maybe for someone else the effective PEM-blocker is breadfruit seeds or a fungus growing on a certain species of beetle. Finding my treatment in my kitchen was amazingly lucky. Maybe someone else will luck into a PEM-blocker that will also work for you. Buying a single lottery ticket gives only a tiny chance of winning, but it can happen, so don't lose hope.
I've been in bed since 2015. I get it. I was very poorly off for an extended period of time. But my wife would always say the same thing each time I thought my life was coming to a premature conclusion (which happened to be a daily occurrence back then).
"You always make it through, you always get past these terrible episodes."
I started improving gradually (diet changes, meditation, improved sleep). And now I can keep the blinds open during the day, openly communicate with others, do productive things on my tablet, and watch/listen to media (with some regularity).
Not focusing on my limitations, and not focusing on the end of my existence, has helped overall. If nothing else, I control my thoughts. And I go, where my thoughts go.
You can do this. Others have improved.
H
"You always make it through, you always get past these terrible episodes."
I started improving gradually (diet changes, meditation, improved sleep). And now I can keep the blinds open during the day, openly communicate with others, do productive things on my tablet, and watch/listen to media (with some regularity).
Not focusing on my limitations, and not focusing on the end of my existence, has helped overall. If nothing else, I control my thoughts. And I go, where my thoughts go.
You can do this. Others have improved.
H
christiankatz
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I've often felt I was on the brink, yet after years of it, I realized I continue to live, lol, and I finally let those thoughts go.
Judee
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Yep...very good description.
Martin aka paused||M.E.
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I “talked” (wrote) about this topic recently with a friend who is as severe as I am.
Though he never was what Whitney calls “extremely severe”, he is besides Whitney the one I know who understands best what PEM can really mean.
When I was moderate, even now when I am very severe, PEM is already a nightmare. But the worse you become the more terrible and unbearable it becomes.
And then there is also a tipping point. A point where this permanent PEM doesn't end. I had this in April this year after two emergency hospital stays and for 6 months in 2018. Every single second feels like dying. Not horrible suffering. Dying. And it goes so far that I prayed to God - I'm an atheist though - that he just takes my life to end this. Every second I wish that it just happens. And I was ready to do this.
My friend said: if you have never been very severe you will never relate how terrible this illness really is. Both he and me went through mild-moderate-severe-very severe...and me even beyond.
It's like having completely another disease. A hell ride with no end in sight.
No phone. No communication. No touch.
It's inhuman.
And I had nothing that helped with it though my dear friend @MichaelK tried so many things with the support of some heartwarming members of this board.
It's like Cort Johnson wrote:
We are failing people at the very severe end of this disease.
Yes, we do. I many ways.
exactly Eddy. a bomb exploding....how can the western world have abandoned so many young people and still does (except for tiny handful working) .....shameful bunch.....
excellent post Martin
I also find that eating a lot of starchy carbs, or especially starches like potatoes and rice hurt my digestive system a lot. I already avoid them but I didn't know about the neuroinflammation link.
How did you did you discover that you had leaky gut and that specifically starches were the culprit?
Hi @ Eddy M......I've been through many different stages of this illness and we may not even recognize that we're feeling better until the day comes when we actually take an interest in life again. It has happened to me a few different times, I'm always afraid that it won't....and then when I least expect it, changes occur.
I hope the same becomes true for each of you. I have trouble realizing that I'm slipping until it's way too late to rest up....not that I do much, anyway. Yours, Lenora.
I really hope i can bounce back!