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Who are the 10% that get better

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I recovered from a severe case of Adrenal Fatigue Syndrome and CFS.

I was mostly couchbound... my house was a always mess. I could not do yard work or go in the sun for more than ~15 mins. I was too unreliable to make friends and extremely isolated... for years.

I researched, consulted with experts and self-experimented non-stop from 2011 to 2016 to get to where I had no further symptoms or complaints. It was the hardest and most grueling thing I have ever done in my life and I think of it as a miracle against the odds.

I've healed to the point where as long as I keep a very clean diet, take a few supplements, and go to bed by 10pm I can live a basically normal life... work, gym, date, friends, throw a party, help friends move, etc.

But no more late night partying, alcohol or competitive sports. I am still pretty selective about out of town travel, unless it has good food and sleep dynamics. I avoid whirlwind adventures that involve non-stop activity for 18 hours a day. I can survive busy days without crashing, I just don't like it.

The best part about recovering is being able to care, do stuff and be there for other people once again - to be generous. It was miserable to be stuck in survival mode, every single thought going towards how to conserve my energy and look out for myself.
Wonderful news! Very inspirational!

What were the key factors in your recovery? Anything you'd do differently? Major insights?

Thank you for sharing.
 

Cohen2

Senior Member
Messages
119
Location
New Zealand
I've been here and back to bedridden and back here again. I definitely have relapsing/remitting patterns to my illness. I've been completely bedridden twice. Right now, I've been in remission for about a two years, though I can feel things are worsening right now.

When I think of being at 75% of normal, I still get PEM, but I can do so much more before triggering PEM than I can when I'm worse.

So, for example, when I'm not bedridden, but instead houseridden, Even 30 minutes of house work broken down into three separate 10 minute 'exertions, could create PEM. When I'm able to work (I am right now), I can work a full day and spend almost an entire hour on housework without triggering PEM. But if I were to try to spend two or three hours on my feet or trying to be social, or traveling, etc, then PEM still fires.

I'm measuring my 'level' based on how much of my life I can actually participate in instead of lie on the bed/couch trying to recover.

I've been at 75% to 85% for two years. But have dropped to around 60% in the last month.

That's amazing that you've been doing so well. The severity of your illness varies so much compared to mine. Well at least mine in the last 8 years.

I have never been bed bound but have never been close to 70 percent either.
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
I recovered from a severe case of Adrenal Fatigue Syndrome and CFS.

I was mostly couchbound... my house was a always mess. I could not do yard work or go in the sun for more than ~15 mins. I was too unreliable to make friends and extremely isolated... for years.

I researched, consulted with experts and self-experimented non-stop from 2011 to 2016 to get to where I had no further symptoms or complaints. It was the hardest and most grueling thing I have ever done in my life and I think of it as a miracle against the odds.

I've healed to the point where as long as I keep a very clean diet, take a few supplements, and go to bed by 10pm I can live a basically normal life... work, gym, date, friends, throw a party, help friends move, etc.

But no more late night partying, alcohol or competitive sports. I am still pretty selective about out of town travel, unless it has good food and sleep dynamics. I avoid whirlwind adventures that involve non-stop activity for 18 hours a day. I can survive busy days without crashing, I just don't like it.

The best part about recovering is being able to care, do stuff and be there for other people once again - to be generous. It was miserable to be stuck in survival mode, every single thought going towards how to conserve my energy and look out for myself.

Similar to myself. Need to avoid adrenaline surges or cortisol spikes also.
Think thats why i believe CFS is an autoimmune resistance to stress. A protection mechanism.
 

TreePerson

Senior Member
Messages
292
Location
U.K.
Similar to myself. Need to avoid adrenaline surges or cortisol spikes also.
Think thats why i believe CFS is an autoimmune resistance to stress. A protection mechanism.

I have wondered this. I had definitely had a lot of stress before it hit me. Stress makes it worse. But I have found any kind of viral or bacterial infection makes it much much worse. According to your theory would an immune response to infection release more stress hormones than a stressful experience? And therefore more auto antibodies?
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
I have wondered this. I had definitely had a lot of stress before it hit me. Stress makes it worse. But I have found any kind of viral or bacterial infection makes it much much worse. According to your theory would an immune response to infection release more stress hormones than a stressful experience? And therefore more auto antibodies?

stress preceded mostly everyone in CFS.
Whether physical, chemical, toxic moulds, food allergies, etc, infection, virus, leaky gut all stress events
then body shutting down PDH pathway to protect its cells from its own blood.
switch gets stuck "on" and CFS ensues.
 

Forbin

Senior Member
Messages
966
So I have done a lot of research on cfs for a couple months now and it seems like the leading doctors say there is up to a 10% chance for someone with this to recover. Who are these people??

Well, here's a possible explanation for perhaps part of the 10%. Obviously, it's just speculation. Please excuse the length.
- - -
[Background:]

Fluge and Mella have hypothesized that there is an unknown "x" factor that is, in some way, linked to B-cells. When "x" is above a certain threshold, ME results. However, when B-cells are depleted, "x" begins to drop. When "x" falls below the "response threshold," there is a "clinical response," and symptoms improve. The degree to which "x" is above the response threshold initially determines the kind of response seen when the B-cells are depleted.
  • If "x" is near the response threshold to begin with, the response kicks in relatively quickly because "x" doesn't have very far to fall before it crosses the response threshold. The result is a "long response" because it begins well before the B-cells start to repopulate and drive up "x" again.
  • If "x" is higher, it will take longer for it to drop below the response threshold. The result is a "short and late response" because not only does "x" take longer to fall below the threshold, but there is consequently less time before the B-cells repopulate and drive up "x" again. The response period will thus be late and short-lived.
  • Finally, if "x" is really high, there won't even be time for it to fall all the way to the response threshold before the B-cells repopulate and begin to drive it up again. In this case there will be "no response."
    [Very high initial levels of "x" may explain why the most severe patients do not respond to B-cell depletion.]
  • Additionally, Fluge and Mella hypothesize that if "x" remains below the response threshold long enough, it may remain there even after the B-cells repopulate. Fluge and Mella call this a "very long sustained response" and speculate that it may involve a "B-cell reset."
[Fluge and Mella's hypothesisized response chart]
Fluge Mella X-Factor.jpg


- - -

[My speculation about the "10%":]

Depending on how the level of "x" is distributed among patents, there could be a subset who, by chance, just happen to be hovering just slightly above the response threshold. These may not necessarily be "mild" cases, just cases close to the response threshold.

In these cases, it might only take some kind of "nudge" to put "x" below the response threshold.

I have no background in this, but here are three crude examples of things I've thought of that might nudge "x" under the response threshold, assuming "x" is already very close to that level. Again, this is pure speculation.
  • "X" may not be static. It may naturally vary up and down within a narrow range. By chance, it may fall below the response threshold and accumulate enough time there to produce Fluge and Mella's "very long sustained response."
  • "X" may naturally drop a small amount after the first few years of illness (when the illness can be more severe). This has no effect on most patients, but, for those near the response threshold, it kicks them below it. This might, in part, explain the patients who seem to recover in the first 5 years or so.
  • "X" may be nudged downward slightly by various treatments that quieten the immune system - [Perhaps treatments such as those that reduce inflammation in autoimmune diseases like inflammatory bowel disease (IBD) ].
In all these cases, the drop in "x" would be small and would have no effect on most patients, but in those whose level of "x" just happens to be very near the response threshold to begin with, it might be just enough to alter the course of the disease.

This is pure speculation and could be wildly wrong (or "not even wrong," to quote Wolgang Pauli) , but it's just something that occurred to me that might be able to explain the "10%."
 

meandthecat

Senior Member
Messages
206
Location
West country UK
After too many wasted years, when I work a full, tough day I feel a humble gratitude. This is not directed toward any deity, supernatural or human but is a felt sense of relief for not experiencing the plunge into pain, nausea and all the rest of it that could last for days or weeks.

I don't know if I am recovered, I am in a temporary functional way, but I am not the same person who went into this over a decade ago ( nube I hear you say). My expectations of life are modest, to be free of pain is a revelation, to be able to climb a hill is like reaching the moon and to be able to think again, is a mixed blessing in the era of Trump and brexit.

I had envisioned my illness as a landscape, if fatigue was a slope then ME was falling of a cliff. My getting better was a long slow hill, with false peaks but always the same struggle. This is different, the load has gone it's like reaching the top.

The crazy thing is that this is just first base, most people take it for granted.....
 

Basilico

Florida
Messages
948
My husband has had CFS for about 6 years or so, and while he's overall worse right now than he was 5 or 6 years ago, he has periods of remission where he can return to the gym (he used to be a bodybuilder and physical activity and weightlifting are really important to him), have a fun night out drinking with friends, etc... and then he has periods of time where he's pretty much couch-ridden and even standing for 10 minutes is enough to make him feel sick.

And then there are periods of time where he's in between, some days he needs more rest, other days he's brewing beer and cleaning his guns and cooking, but is still careful to take breaks and rest. On a really bad day, it's so easy to despair, but the fact that he can go from having a really bad day/week/month/year to suddenly having a pretty good day tells me that there is some mechanism that can easily reverse this whole thing. I really believe that there is something triggering his body to believe it needs 'sick behavior' and we just need to figure out how to flip that switch in the other direction. We've been experimenting non stop, some things have helped, others have made him worse, others did nothing. Many things were extremely expensive, but other things were surprisingly cheap.

I recently watched this TV series called Alone, which is a reality show (the only one I've ever watched, since I despise reality TV) where 10 people are dropped alone in a harsh wilderness environment and they complete to see who can survive the longest. And the ones who win are not the super strong military dudes who are overconfident at the beginning, or the hippy-wow-at-one-with-nature people, either. The ones who win are the ones who no matter how hard and awful and frustrating it gets NEVER GIVE UP. And that's really something that CFS has taught me, that when things seem the darkest, it can always get better, and the only way it's going to get better is if you don't give up.

When we've tried the newest thing and he doesn't feel better, and I feel like I'm out of 'next step' ideas, that's when it's the hardest. It's amazing that every time I'm convinced we've tried everything and there is literally nothing left to do, some other idea always shows up (often in the form of a post here), and then I'm filled with hope. Because even if we can't finally flip that switch once and for all, if we can at least find things that improve his situation (some of which we've found already) then life isn't so bad. Will he ever be 100% cured? Probably not. But being this sick makes you realize that you don't need to be 100% cured to have a happy and fulfilling life. It's not 0% or 100%; if tomorrow you could suddenly do 10 push ups again with no problem, wouldn't that feel amazing even if you still had some other issues? Focus on small improvements. If one day you can stand for a few extra minutes, celebrate that and feel good about it. Spending your time in despair and misery is not going help you heal.

And that is another lesson: being this sick really puts life into perspective; it can make you appreciate things you'd never even thought about before. When my husband is having a better day and we are able to go to a brewery or out for a walk, I appreciate it so deeply. Others have already given lots of great advice and I think one of the most important ones is to focus on strengthening your mental state and determination. You are your own greatest resource, and I think that you'll learn that you are capable of being much stronger than you ever thought possible.

One of the things that you'll find as you read posts on this site is that there are a lot of really exceptionally smart people here who know a lot and have some great suggestions. Spend as much time on this site reading everything you can. There is so much really good info here! For example: http://forums.phoenixrising.me/inde...ce-pem-post-exertional-malaise-crashes.48438/
 
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gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
My husband has had CFS for about 6 years or so, and while he's overall worse right now than he was 5 or 6 years ago, he has periods of remission where he can return to the gym (he used to be a bodybuilder and physical activity and weightlifting are really important to him), have a fun night out drinking with friends, etc... and then he has periods of time where he's pretty much couch-ridden and even standing for 10 minutes is enough to make him feel sick.

And then there are periods of time where he's in between, some days he needs more rest, other days he's brewing beer and cleaning his guns and cooking, but is still careful to take breaks and rest. On a really bad day, it's so easy to despair, but the fact that he can go from having a really bad day/week/month/year to suddenly having a pretty good day tells me that there is some mechanism that can easily reverse this whole thing. I really believe that there is something triggering his body to believe it needs 'sick behavior' and we just need to figure out how to flip that switch in the other direction. We've been experimenting non stop, some things have helped, others have made him worse, others did nothing. Many things were extremely expensive, but other things were surprisingly cheap.

I recently watched this TV series called Alone, which is a reality show (the only one I've ever watched, since I despise reality TV) where 10 people are dropped alone in a harsh wilderness environment and they complete to see who can survive the longest. And the ones who win are not the super strong military dudes who are overconfident at the beginning, or the hippy-wow-at-one-with-nature people, either. The ones who win are the ones who no matter how hard and awful and frustrating it gets NEVER GIVE UP. And that's really something that CFS has taught me, that when things seem the darkest, it can always get better, and the only way it's going to get better is if you don't give up.

When we've tried the newest thing and he doesn't feel better, and I feel like I'm out of 'next step' ideas, that's when it's the hardest. It's amazing that every time I'm convinced we've tried everything and there is literally nothing left to do, some other idea always shows up (often in the form of a post here), and then I'm filled with hope. Because even if we can't finally flip that switch once and for all, if we can at least find things that improve his situation (some of which we've found already) then life isn't so bad. Will he ever be 100% cured? Probably not. But being this sick makes you realize that you don't need to be 100% cured to have a happy and fulfilling life. It's not 0% or 100%; if tomorrow you could suddenly do 10 push ups again with no problem, wouldn't that feel amazing even if you still had some other issues? Focus on small improvements. If one day you can stand for a few extra minutes, celebrate that and feel good about it. Spending your time in despair and misery is not going help you heal.

And that is another lesson: being this sick really puts life into perspective; it can make you appreciate things you'd never even thought about before. When my husband is having a better day and we are able to go to a brewery or out for a walk, I appreciate it so deeply. Others have already given lots of great advice and I think one of the most important ones is to focus on strengthening your mental state and determination. You are your own greatest resource, and I think that you'll learn that you are capable of being much stronger than you ever thought possible.

One of the things that you'll find as you read posts on this site is that there are a lot of really exceptionally smart people here who know a lot and have some great suggestions. Spend as much time on this site reading everything you can. There is so much really good info here! For example: http://forums.phoenixrising.me/inde...ce-pem-post-exertional-malaise-crashes.48438/

I find there seems to be an awful lot of gym bunnies in this forum or tri athletes, distance runners, etc.
So many health conscious people come down with CFS. Bizarre.
 
Messages
15,786
The ones who win are the ones who no matter how hard and awful and frustrating it gets NEVER GIVE UP.
No, the ones who win "Alone" are the ones who have a good supply of body fat at the start. Two of the longer-lasting contestants in season 3 got pulled due to severe malnutrition. They never gave up, but their bodies were about to.

The winner wasn't eating more, but losing weight at the same rate as the others brought him down to a normal BMI at the end.
 

Basilico

Florida
Messages
948
No, the ones who win "Alone" are the ones who have a good supply of body fat at the start. Two of the longer-lasting contestants in season 3 got pulled due to severe malnutrition. They never gave up, but their bodies were about to.

The winner wasn't eating more, but losing weight at the same rate as the others brought him down to a normal BMI at the end.

That's what I was thinking at first, but it's not true, in season 3, the girl from Alaska started out being pretty small and skinny and she was in the final 2 left, and was pulled for health reasons while the guy remaining probably wouldn't have made it more than another few days...so it's not just how much body fat they start out with. Body fat or not, my pep talk is about the importance about not giving up!
 

maybe some day

Senior Member
Messages
775
Location
West coast
I was about 80% recovered, for a good 5 to 10 years. Had a few hits along the way, but bounced back within the week. Im not sure what caused it, but if I could bottle it and give it to everyone, I would. Sadly though, I relapsed hard. 2017 so far has not been kind. Even though I was better, I didnt over due it. Kept a steady pace, yet was always in tune to what my body as telling me. I sincerely believe there is a recovery process and remsission, but cfs is always lurking. No matter how hard we try to stay the course, cfs can brew into a firestorm all over again. I read a quote about cfs.."I will never trust my health again"
Unless we find that "XYZ causes the illness, and take this drug cocktail that will destroy XYZ", I can see why so many of us dont trust a full to partial remission.
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
I was about 80% recovered, for a good 5 to 10 years. Had a few hits along the way, but bounced back within the week. Im not sure what caused it, but if I could bottle it and give it to everyone, I would. Sadly though, I relapsed hard. 2017 so far has not been kind. Even though I was better, I didnt over due it. Kept a steady pace, yet was always in tune to what my body as telling me. I sincerely believe there is a recovery process and remsission, but cfs is always lurking. No matter how hard we try to stay the course, cfs can brew into a firestorm all over again. I read a quote about cfs.."I will never trust my health again"
Unless we find that "XYZ causes the illness, and take this drug cocktail that will destroy XYZ", I can see why so many of us dont trust a full to partial remission.

same here
i am 80-90% of function but can fall back to 50% in a flash
it just lurks beneath.
my biggest nightmare is nightmares.:)
total setback when i have those.
 

Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
My husband has had CFS for about 6 years or so, he has periods of remission have a fun night out drinking with friends, etc...

@Basilico
This line jumped out at me. Has your husband tried a gluten free (no beer, bread) diet? Has he tried going to be early? These were really key to my recovery, but we're all different.

I would personally not be able to function / lift weights well if I had nights out drinking.
 

Basilico

Florida
Messages
948
@Basilico
This line jumped out at me. Has your husband tried a gluten free (no beer, bread) diet? Has he tried going to be early? These were really key to my recovery, but we're all different.

I would personally not be able to function / lift weights well if I had nights out drinking.

Oh yes. I was actually gluten/dairy/soy free paleo for many years, and he also ate that way when we first got together. We've both tried EVERY dietary plan under the sun - low carb paleo, high fat 'primal', traditional Sally Fallon/Perfect Health Diet, no lectins, no this that or the other things. The one take away that I've learned about diet and sickness is that if you were generally eating a healthy diet before getting sick, then dietary changes don't seem to help. (There are always exceptions, but the vast majority of people I see who are helped by diet changes are the ones who were eating a lot of junk to begin with). At this point, I feel 100% confident that there is nothing about our diet that is making us worse, but I do appreciate you sharing what helped you.

While he is definitely worse if he hasn't slept well, for him the quality of his sleep is more important than what time he goes to sleep. We've also tried every kind of sleep "hygiene" suggestion, and none seem to make any difference.

He doesn't have many fun nights out drinking. In fact, his last one was exactly a year ago - I think he had 3 or 4 beers, and he definitely paid for it the next day, but it was worth it because he can so rarely just let loose and have fun. He also hasn't been weightlifting in about a year - his PEM has been too bad. Even during periods of remission, he can't train anywhere near as hard as he used to. When he's in remission, he's not how he used to be before CFS, he's just capable of doing things like walking for an hour or doing pushups or changing the oil on his car without crashing. Considering that a few years ago he used to do pull-ups with 50+ lbs of weights attached to his waist, being able to do a few pushups is not that impressive for him (though he can't do those now because it wouldn't instantly trigger PEM).
 

Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
I found that going to bed at the same time every night - a.k.a. keeping a Circadian rhythm - was a make or break factor in how well I feel.

My clock was so scrambled and keeping it steady made all the difference.

It's good you have already experimented with sleep hygeine.

He may have an entirely different illness that's causing fatigue than what was causing mine: disturbed circadian rhythm, food intolerances flaring allergies / immune reactions, parasites, numerous vitamin and mineral deficiencies, methylation dysfunction, sublincal hypothryodism, severe mitochondrial damage from oxxidative stress, etc.
 

otherworldly

very severe
Messages
36
No like I would kill myself, I can't keep doing this. It's a living hell.

the problem i have is relating 2 most ppl, if not all on this forum. i am very severe. & even the difference b/w severe & very severe is vast, never mind compared 2 mild & moderates! whole other solar system! i am in a living hell & when i hear the moderates say the same, i think 2 myself: oh my, their never gonna make it.....

b/c this disease is relentless. it is a very cruel disease in its most severe form. it unapologetically infiltrates every single system of the physical body. it forces u 2 tap into places u never knew existed, far away places in the psyche, opening the doorways 2 our true multi dimensional selves 4 which our survival depends on. otherwise, u won’t stand a chance & will succumb 2 the emptiness which preludes thoughts of wanting 2 extinguish oneself.
 
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maybe some day

Senior Member
Messages
775
Location
West coast
the problem i have is relating 2 most ppl, if not all on this forum. i am very severe. & even the difference b/w severe & very severe is vast, never mind compared 2 mild & moderates! whole other solar system! i am in a living hell & when i hear the moderates say the same, i think 2 myself: oh my, their never gonna make it.....

b/c this disease is relentless. it is a very cruel disease in its most severe form. it unapologetically infiltrates every single system of the physical body. it forces u 2 tap into places u never knew existed, far away places in the psyche, opening the doorways 2 our true multi dimensional selves 4 which our survival depends on. otherwise, u won’t stand a chance & will succumb 2 the emptiness which preludes thoughts of wanting 2 extinguishing oneself.
True words right there.