Has anyone on this site cured him or herself of CFS/ME? Did I?

[hapl808]

I don't know what perfect storm caused my illness nor do I know what I did that worked effectively enough to cure it, or throw it into remission.

One of the great challenges with this disorder. We can ascribe various causes or cures, but at the end of the day we're all guessing. Glad to hear you did have such a remission - what we all hope for. Hope you are enjoying it and remembering not to push yourself to where it can happen again.

 

[overtrain]

One of the great challenges with this disorder. We can ascribe various causes or cures, but at the end of the day we're all guessing. Glad to hear you did have such a remission - what we all hope for. Hope you are enjoying it and remembering not to push yourself to where it can happen again.

Thanks so much. All people like me can do is try to live well but I gotta tell ya, I look over my shoulder A LOT, & not a day passes that I ever forget where I was a decade back. And I speak up every opportunity when I read or hear anyone downgrading LC or ME people's experiences. If only these people, especially *doctors*, could take 5 minutes in our shoes. Good God.

 

[Zahr82]

Also many of the "cured" people still know the difference between their former health and now.

They can lead full lives and are very relieved about that, and most of us consider that cured, because of their functional level. But they are not 100%.

There could be some at 100% but I doubt it. I think it's like a healthy person having a serious injury. They may be fine after healing, but not 100%.

Definitely. I had post viral fatigue, in 2008, Before getting long covid last year. I recovered in under a year. But when I look at it, I never had quite the same stamina, plus I still had cold extremities regularly, which I forgot I still even had

 

[overtrain]

Definitely. I had post viral fatigue, in 2008, Before getting long covid last year. I recovered in under a year. But when I look at it, I never had quite the same stamina, plus I still had cold extremities regularly, which I forgot I still even had

It's hard for me to gauge the before & after stamina, because I went through early menopause at 45 & was still having hot flashes, etc. when I got CFS at 49. I certainly would love to go back to how I felt prior to menopause, my God. I had no idea how different I'd feel after never getting my period again . It might be called "the curse," but those hormones coursing through my body I really miss.

Which is 6 of 1, half a dozen of the other. Nothing I can do about the passage of time & how I wish I felt the way I did 7 years prior. When I first started feeling better from the CFS, I'd try & figure out, okay, but how much better did I feel BEFORE I got sick compared to now? When I was on the upslope, I really did feel like I could gauge it in degrees! Like, 15% better, on up to 100% better. Every few months I'd get more degrees higher. Started really feeling cocky around 60%

Hell, most here would settle for 1% better on any given day. Anything that's an improvement. At this point and age in my life, I'm just getting old, & any tiredness out of the ordinary I attribute to age. I definitely do not have the ability to use a heavy lawnmower on my yard in the heat & get it done in one shot anymore. Things like that. Or even sit out in the sun. No way.

Thanks for your post and I hope you're better soon.

 

[Zahr82]

It's hard for me to gauge the before & after stamina, because I went through early menopause at 45 & was still having hot flashes, etc. when I got CFS at 49. I certainly would love to go back to how I felt prior to menopause, my God. I had no idea how different I'd feel after never getting my period again . It might be called "the curse," but those hormones coursing through my body I really miss.

Which is 6 of 1, half a dozen of the other. Nothing I can do about the passage of time & how I wish I felt the way I did 7 years prior. When I first started feeling better from the CFS, I'd try & figure out, okay, but how much better did I feel BEFORE I got sick compared to now? When I was on the upslope, I really did feel like I could gauge it in degrees! Like, 15% better, on up to 100% better. Every few months I'd get more degrees higher. Started really feeling cocky around 60%

Hell, most here would settle for 1% better on any given day. Anything that's an improvement. At this point and age in my life, I'm just getting old, & any tiredness out of the ordinary I attribute to age. I definitely do not have the ability to use a heavy lawnmower on my yard in the heat & get it done in one shot anymore. Things like that. Or even sit out in the sun. No way.

Thanks for your post and I hope you're better soon.

Thankyou, I get that. I can't remember how fit I was pre 2008 really, but there was definitely a difference. This long covid is quite different though

 

[Booble]

Definitely. I had post viral fatigue, in 2008, Before getting long covid last year. I recovered in under a year. But when I look at it, I never had quite the same stamina, plus I still had cold extremities regularly, which I forgot I still even had

I was thinking the same thing yesterday. I've always been saying that at about 6 months post viral I was about 85% back and 12 months to get back to "normal." (Normal in quotes because my normal has always been kind of crappy.) But as I thought about it yesterday, it was more like 6 months to get to 75% and 12 months to get....I don't know what....87%? 92%? I don't know but I don't really feel the same. Could because the pandemic threw everything into a tailspin and I'm not even attempting a normal life.

 

[Zahr82]

I was thinking the same thing yesterday. I've always been saying that at about 6 months post viral I was about 85% back and 12 months to get back to "normal." (Normal in quotes because my normal has always been kind of crappy.) But as I thought about it yesterday, it was more like 6 months to get to 75% and 12 months to get....I don't know what....87%? 92%? I don't know but I don't really feel the same. Could because the pandemic through everything into a tailspin and I'm not even attempting a normal life.

Hold on, are you talking about post viral covid you had?.
Yeah, I was like on about 85 percent, for about 5 years after it. Then 90 until 2021 when I got LC.

 

[Booble]

Hold on, are you talking about post viral covid you had?.
Yeah, I was like on about 85 percent, for about 5 years after it. Then 90 until 2021 when I got LC.

No, I mean I don't know. I have not had COVID. Unless it was.
I got sick the beginning of December 2019 when COVID was primarily in China.
Although I was staying at the time in Honolulu next to Chinatown.
But I don't like to be those people who got a virus end of 2019 beginning of 2020 who say unequivocally that they had COVID. I don't think I did. I think I had a precursor to COVID virus. But who knows. It was bad.

 

[Zahr82]

I was thinking the same thing yesterday. I've always been saying that at about 6 months post viral I was about 85% back and 12 months to get back to "normal." (Normal in quotes because my normal has always been kind of crappy.) But as I thought about it yesterday, it was more like 6 months to get to 75% and 12 months to get....I don't know what....87%? 92%? I don't know but I don't really feel the same. Could because the pandemic through everything into a tailspin and I'm not even attempting a normal life.

I'm 8 months into LC, and I'd say

No, I mean I don't know. I have not had COVID. Unless it was.
I got sick the beginning of December 2019 when COVID was primarily in China.
Although I was staying at the time in Honolulu next to Chinatown.
But I don't like to be those people who got a virus end of 2019 beginning of 2020 who say unequivocally that they had COVID. I don't think I did. I think I had a precursor to COVID virus. But who knows. It was bad.

Well sorry to say, but its very possible. I know a few people who say they had it then

 

[Rufous McKinney]

But I don't like to be those people who got a virus end of 2019 beginning of 2020 who say unequivocally that they had COVID. I don't think I did. I think I had a precursor to COVID virus. But who knows. It was bad.

my friend got "something" early Jan 2020 the met the description of COVID, while abroad traveling in Turkey....she ended up with Long haul. So she got nailed at the get go. (I need to check in and see how she is doing).

 

[Zahr82]

my friend got "something" early Jan 2020 the met the description of COVID, while abroad traveling in Turkey....she ended up with Long haul. So she got nailed at the get go. (I need to check in and see how she is doing).

Yeah, these SARS viruses are terrible for post viral syndromes. She got nailed? Lol

 

[Rufous McKinney]

She got nailed? Lol

yes. I think I have decided to stay on my local continent and not go traipsing off to any other continents.

I always wanted to visit Turkey, it seems to be an amazing place. But I can watch a travel video, instead!

 

[overtrain]

No, I mean I don't know. I have not had COVID. Unless it was.
I got sick the beginning of December 2019 when COVID was primarily in China.
Although I was staying at the time in Honolulu next to Chinatown.
But I don't like to be those people who got a virus end of 2019 beginning of 2020 who say unequivocally that they had COVID. I don't think I did. I think I had a precursor to COVID virus. But who knows. It was bad.

Ok, this is just my uninformed opinion, but I've read numerous accounts of Fall 2019 ppl having had a mystery illness, bad lungs, showing up in U.S. emergency rooms & told by doctors it was some never-before-seen type of pneumonia. And I have a friend who got terribly ill with lung congestion in Dec. that hung on for months. She's young, early 30s, & had never been so sick.

What I'm trying to convey is a definite anomaly was happening with lungs in fall into winter, 2019. Very well could have been Covid. JMHO

 

[overtrain]

I'm 8 months into LC, and I'd say

Well sorry to say, but its very possible. I know a few people who say they had it then

Yep. I just posted another post here I believe it was already here Fall into Winter, 2019; mystery lung issues doctors hadn't seen before, some odd new type of pneumonia was all they could say.

 

[Zahr82]

Ok, this is just my uninformed opinion, but I've read numerous accounts of Fall 2019 ppl having had a mystery illness, bad lungs, showing up in U.S. emergency rooms & told by doctors it was some never-before-seen type of pneumonia. And I have a friend who got terribly ill with lung congestion in Dec. that hung on for months. She's young, early 30s, & had never been so sick.

What I'm trying to convey is a definite anomaly was happening with lungs in fall into winter, 2019. Very well could have been Covid. JMHO

Yep. I had a friend who died of pneumonia around that time. I can't say if it was covid. And I know a few others with strange upper respiritory ilnesses then too. I'm sure it was around.

 

[CSMLSM]

Thanks so much. All people like me can do is try to live well but I gotta tell ya, I look over my shoulder A LOT, & not a day passes that I ever forget where I was a decade back. And I speak up every opportunity when I read or hear anyone downgrading LC or ME people's experiences. If only these people, especially *doctors*, could take 5 minutes in our shoes. Good God.

I DO NOT bother looking over MY shoulder at all, I look forward and anything that gets in my way I go through it

 

[overtrain]

I DO NOT bother looking over MY shoulder at all, I look forward and anything that gets in my way I go through it

Yeah, I lived life like that & all it did was ruin it. Grateful to be more introspective, listen to my body, know my limits, let go of some control issues like my moronic perfectionism. I have no interest in forcing nor pushing myself through anything anymore. Those who lived like that often hit a wall when enough years go by & they get deeply humbled. An event comes along like an accident, an injury, an illness, a divorce, or death. They reevaluate who they've been trying to prove their toughness or worth to all those years. I was trying to prove something to myself by being a typical Type A. Wasting my time hurting myself is no way to live.

I say this as someone who just finished a four year project on the Civil War, a topic I had absolutely zero interest in but felt obligated to do for reasons I won't go into. I'm glad I did it, but once again, I went WAY overboard on research & writing. 75% that made it to my pages didn't need to be there.

Time & again I do this to myself, both psychologically & physically. I have PERMANENT injuries from my 20s because I pushed through pain. I pushed through pain because I bought into the American Rugged Man myth. The independent Make My Day b.s. As a woman, I needed to prove I wasn't like all the others. If you know, you know.

Learning from my mistakes by looking over my shoulder is a strength & a sound response if I want to maintain the health I tried to crawl my way back to when I thought my life was over those two horrific years. It can't even be called an illness, really, because it's indescribably bad & soul-destroying. Like it has for others, it can return at any time, & I stay walking through the years *in reality* with that knowledge. So between now & the grave, still learning late in life, I'll do what's in the interests of my health & well-being.

This is a long way around saying I didn't find your post on my thread helpful. And I don't see the reason for it being here. And I hope you do not, in your future, learn the hard way to REST like so many of us have been forced to, down on hands & knees, crawling to the bathroom. Not to mention the bed-bound, who would pay for the opportunity to do so. Best of luck.

 

[CSMLSM]

Yeah, I lived life like that & all it did was ruin it. Grateful to be more introspective, listen to my body, know my limits, let go of some control issues like my moronic perfectionism. I have no interest in forcing nor pushing myself through anything anymore. Those who lived like that often hit a wall when enough years go by & they get deeply humbled. An event comes along like an accident, an injury, an illness, a divorce, or death. They reevaluate who they've been trying to prove their toughness or worth to all those years. I was trying to prove something to myself by being a typical Type A. Wasting my time hurting myself is no way to live.

I say this as someone who just finished a four year project on the Civil War, a topic I had absolutely zero interest in but felt obligated to do for reasons I won't go into. I'm glad I did it, but once again, I went WAY overboard on research & writing. 75% that made it to my pages didn't need to be there.

Time & again I do this to myself, both psychologically & physically. I have PERMANENT injuries from my 20s because I pushed through pain. I pushed through pain because I bought into the American Rugged Man myth. The independent Make My Day b.s. As a woman, I needed to prove I wasn't like all the others. If you know, you know.

Learning from my mistakes by looking over my shoulder is a strength & a sound response if I want to maintain the health I tried to crawl my way back to when I thought my life was over those two horrific years. It can't even be called an illness, really, because it's indescribably bad & soul-destroying. Like it has for others, it can return at any time, & I stay walking through the years *in reality* with that knowledge. So between now & the grave, still learning late in life, I'll do what's in the interests of my health & well-being.

This is a long way around saying I didn't find your post on my thread helpful. And I don't see the reason for it being here. And I hope you do not, in your future, learn the hard way to REST like so many of us have been forced to, down on hands & knees, crawling to the bathroom. Not to mention the bed-bound, who would pay for the opportunity to do so. Best of luck.

I have been the worst you can be with this condition and you misunderstand my post. I do not look over my shoulder to my past experiences in the sense I do not focus on the negative and I strive to get better and figure it all out, which I have now. I know what I am doing to my body to be well and I did not give up until I did. Thats what I ment I am sorry you took it the wrong way. I meant to inspire resilience. I will admit that my stance, because thats who I am almost killed me countless times in many ways. I had no life pushing myself and it paid off. I was willing to die to find an answer. I am sorry you feel your level of health is the limit, I tell you it is not and what I take may change your life.

I have way longer duration of illness compared to you so I have had longer to get stronger about all this. I can help you to be as well as me if you like. I am only on this site to try to help others to be as well as me after nearly forty years dealing with it. I charge nothing and want to give you the world.

Believe me or not! that is the issue here! I can show why what I do works with science and research. It is not fluff its real.

Sincerely all the best!

 

[overtrain]

Had anyone found, over the past half-century, anything whatsoever that could be "taken" besides rest & breathing one moment to the next, this website wouldn't even exist.

Careful of snakeoil, & snakeoil salespeople purporting to tell you how you feel, how your health isn't as good as theirs, that only if you "took" what they have on offer, you, too, could be as shiny & new as them, a real-life Phoenix out of the ashes. Free or not, entirely unsolicited.

I posted this originally almost a decade back to see if anyone else had, for the most part, overcome CFS/ME because when I searched the site I found nothing. Probably there were threads back then I just never saw. I never imagined this would get 11k & counting hits over the years.

I feel a responsibility to any newcomer desperate for help who may read this to say hang in there. Do what's right for you. Keep doing what you finally figure out may help rather than hinder your health. You're in your body, no one else is. Through it all, the worst despair you've ever felt, just put one foot in front of the other each day & night & next day when you wake up worse than the night before. I never thought I'd get out of it. Fire any doctor who won't help or believe you.

The *constructive* responses to my post, the ones that helped & continue to, are the ones from people like me who "recovered," then many years later fell right back in. They act like searchlights of reminder where things can go if I lack mindfulness long enough. By that I mean if I push myself. If I run my body ragged like I did in 2010-2011, then catch another respiratory bug. EBV flares up. All that.

And the precipitator may not even be a bug. It might be too much stress. Who knows. But I appreciate the members who said I was where you are so BE CAREFUL. I'll post back here in a year, but meanwhile, anyone else who recovered or mainly recovered, or those who did so then fell down the abyss again, please let us know your experience. I really appreciate it & take your words to heart. Be well.

 

[CSMLSM]

Had anyone found, over the past half-century, anything whatsoever that could be "taken" besides rest & breathing one moment to the next, this website wouldn't even exist.

Careful of snakeoil, & snakeoil salespeople purporting to tell you how you feel, how your health isn't as good as theirs, that only if you "took" what they have on offer, you, too, could be as shiny & new as them, a real-life Phoenix out of the ashes. Free or not, entirely unsolicited.

I posted this originally almost a decade back to see if anyone else had, for the most part, overcome CFS/ME because when I searched the site I found nothing. Probably there were threads back then I just never saw. I never imagined this would get 11k & counting hits over the years.

I feel a responsibility to any newcomer desperate for help who may read this to say hang in there. Do what's right for you. Keep doing what you finally figure out may help rather than hinder your health. You're in your body, no one else is. Through it all, the worst despair you've ever felt, just put one foot in front of the other each day & night & next day when you wake up worse than the night before. I never thought I'd get out of it. Fire any doctor who won't help or believe you.

The *constructive* responses to my post, the ones that helped & continue to, are the ones from people like me who "recovered," then many years later fell right back in. They act like searchlights of reminder where things can go if I lack mindfulness long enough. By that I mean if I push myself. If I run my body ragged like I did in 2010-2011, then catch another respiratory bug. EBV flares up. All that.

And the precipitator may not even be a bug. It might be too much stress. Who knows. But I appreciate the members who said I was where you are so BE CAREFUL. I'll post back here in a year, but meanwhile, anyone else who recovered or mainly recovered, or those who did so then fell down the abyss again, please let us know your experience. I really appreciate it & take your words to heart. Be well.

I agree with everything you say and I am not a snake oil salesman. I was you for many years/decades getting better, crashing and all that goes with that. But I have found an answer, someone has to and it is me. If you do not want to believe I cannot change that and feel sad you will not benefit from this.

LDN is considered something that helps and my treatment does the same things and more and better. I have a thread comparing the two here-

(1) I just wanted to show briefly the comparison of Caryophyllene and LDN. | Phoenix Rising ME/CFS Forums

I have just realised I had thought I had not liked your post and must have unliked it by mistake. Is this why you are being this way it was an accident I will go like again sorry.