My Chronic Fatigue Recovery Story

[astraea]

Thanks for your story. I certainly believe that the "emotions" and "mind" can (profoundly, actually profoundly is putting it too lightly) effect the "body". Thinking otherwise is silly. Nor, as you say, does acknowledging that mean that CFS is somehow less "real" or more "in your head" that any other illness, no matter how severe. Insisting that the reality of CFS must then also equate with its complete non relation to the mental and emotional is immature and just reinforces a notion of mind/body dualism. Surely we should know better. None of this guarantees a "cure" for anybody, nor does it make the illness and the obstacles any less serious. Nor does it mean, in any way, that someone's illness is "their fault" as if they stand as an isolated individual in this world. All these conclusions would also be completely lacking insight and maturity. Thanks again for sharing your story and your viewpoints. It's a shame that those that are so ill cannot let go of this dichotomy, largely no doubt, because of an understandable defensiveness. We have not been put in a good position, or looked at with the same generosity of those with other serious illnesses.

 

[xks201]

I wish it was all that simple. I'm trying to bite my tongue and say that's not cfs but unfortunately cfs is nothing but symptoms technically.

 

[taniaaust1]

Show us you have some awareness of the criteria to diagnose CFS/ME that have already been mentioned in this thread.

I got five on it that you never had CFS/ME. For you to post that you did have CFS/ME, when all you had was "chronic fatigue" just wastes our time. But good for you that you're feeling better from something that was causing your fatigue.

This comment makes me want to jump to the defense of the poor original poster cause of the referance that its "wasting peoples time" here.

I think we all should all keep in mind that there are many with a CFS diagnoses who in fact do just have what we here would call "chronic fatigue" and not ME and this site does cater for both those who have ME and who do have CFS too even if its under one of the shoddy defintions of it.

Her post even if it is one which wont help most of us, could well have helped one of another who's been diagnosed under a shoddy CFS definition too. Wessely's views wouldnt have lasted as long as they have if their wasnt that chronic fatigue group slammed in with ME people.
...........

To the original poster.. please check out the canadian consensus criteria for ME/CFS and if you dont meet that, it would be best considering yourself to have had "chronic fatigue" and not "chronic fatigue syndrome'.

Most of us here have ME or fit the Canadian Consensus Criteria of ME/CFS .. and hence talk therapies just dont work. Most of us have testable abnormalities in our bodies and a huge range of symptoms.

ME/CFS isnt just about how someone "feels" eg feeling back pain, feeling tired. I agree that some of the feeling stuff may be helped by mind therapies.

For myself thou ME/CFS it about abnormal EEGs, abnormal neurological tests, messed up autonomic system showing testable dysfunctions, increased allergy reactions, messed up endocrine system etc etc. To fix these with the mind would be like trying to fix cancer with the mind.

 

[Vic]

As soon as I see a new thread claiming to have a cure for CFS/ME the first thing I do is look to see if it's a new member. And every time it is. Never once have I seen a long time member claim to have been cured. Maybe something that helped them but no more than that.

That's probably largely because sitting at a computer actually keeps you from getting better.

The intertwining of emotions with the body is very interesting. I too have been able to notice exacerbation of musculoskeletal pain and other symptoms in response to emotional distress, like being betrayed or heartbroken. Particularly the low back pain, or sacroiliac joint pain in my case. Many emotions have a bodily reaction. A kid gets excited they get bouncy and jump up and down, a threatening environment causes shallow breathing, heart rate elevates from all sorts of arousals.

I think the key thing everyone should consider is that everything in our body is connected to everything else. That means that even the slightest change in the little toe will alter the configuration of our brains, however small, and vice versa. I think the biggest thing to take away from the original poster's experience is to FEEL YOUR BODY. Become aware of subtle changes. Try working out exact cause and effects or patterns of experience. Your body is leaving a trail of bread crumbs for you. You just have to look for it.

Also, I see when people come up with cure stories here, there is a knee jerk reaction from many that s/he must not have had ME/CFS. From what I've observed, the effective cause of ALL chronic fatigue syndromes, minor or significant, are in the musculoskeletal system. Feel it.

 

[Valentijn]

Insisting that the reality of CFS must then also equate with its complete non relation to the mental and emotional is immature and just reinforces a notion of mind/body dualism.

I don't think it's "immature" to question the assertion that dealing with emotions can cure a physical illness. Rather it's a skepticism which is rationally based upon the current state of scientific knowledge.

If you're going to attribute diseases and cures to outrageous causes and treatments, I think you're going to need to provide stronger evidence than some hand-waving and references to the mind-body connection. And please stop insulting people who disagree with you. It rather undermines your own arguments and credibility.

 

[Cheshire]

Thanks for your story. I certainly believe that the "emotions" and "mind" can (profoundly, actually profoundly is putting it too lightly) effect the "body". Thinking otherwise is silly. Nor, as you say, does acknowledging that mean that CFS is somehow less "real" or more "in your head" that any other illness, no matter how severe. Insisting that the reality of CFS must then also equate with its complete non relation to the mental and emotional is immature and just reinforces a notion of mind/body dualism. Surely we should know better. None of this guarantees a "cure" for anybody, nor does it make the illness and the obstacles any less serious. Nor does it mean, in any way, that someone's illness is "their fault" as if they stand as an isolated individual in this world. All these conclusions would also be completely lacking insight and maturity. Thanks again for sharing your story and your viewpoints. It's a shame that those that are so ill cannot let go of this dichotomy, largely no doubt, because of an understandable defensiveness. We have not been put in a good position, or looked at with the same generosity of those with other serious illnesses.

I think implying that people who have different opinions than yours are "lacking insight and maturity" is a quite dismissive.

 

[A.B.]

Thanks for your story. I certainly believe that the "emotions" and "mind" can (profoundly, actually profoundly is putting it too lightly) effect the "body". Thinking otherwise is silly. Nor, as you say, does acknowledging that mean that CFS is somehow less "real" or more "in your head" that any other illness, no matter how severe. Insisting that the reality of CFS must then also equate with its complete non relation to the mental and emotional is immature and just reinforces a notion of mind/body dualism. Surely we should know better. None of this guarantees a "cure" for anybody, nor does it make the illness and the obstacles any less serious. Nor does it mean, in any way, that someone's illness is "their fault" as if they stand as an isolated individual in this world. All these conclusions would also be completely lacking insight and maturity. Thanks again for sharing your story and your viewpoints. It's a shame that those that are so ill cannot let go of this dichotomy, largely no doubt, because of an understandable defensiveness. We have not been put in a good position, or looked at with the same generosity of those with other serious illnesses.

Stereotypical psychobabble, completely detached from objective reality, with a good dose of victim blaming.

 

[chipmunk1]

Thanks for your story. I certainly believe that the "emotions" and "mind" can (profoundly, actually profoundly is putting it too lightly) effect the "body". Thinking otherwise is silly. Nor, as you say, does acknowledging that mean that CFS is somehow less "real" or more "in your head" that any other illness, no matter how severe. Insisting that the reality of CFS must then also equate with its complete non relation to the mental and emotional is immature and just reinforces a notion of mind/body dualism. Surely we should know better. None of this guarantees a "cure" for anybody, nor does it make the illness and the obstacles any less serious. Nor does it mean, in any way, that someone's illness is "their fault" as if they stand as an isolated individual in this world. All these conclusions would also be completely lacking insight and maturity. Thanks again for sharing your story and your viewpoints. It's a shame that those that are so ill cannot let go of this dichotomy, largely no doubt, because of an understandable defensiveness. We have not been put in a good position, or looked at with the same generosity of those with other serious illnesses..

mind over body is best understood as in believing being hit by a train is as painful and real as visualizing it.

 

[Snow Leopard]

I think the key thing everyone should consider is that everything in our body is connected to everything else. That means that even the slightest change in the little toe will alter the configuration of our brains, however small, and vice versa. I think the biggest thing to take away from the original poster's experience is to FEEL YOUR BODY. Become aware of subtle changes. Try working out exact cause and effects or patterns of experience..

Many of us do.

Some of us have been ill for many years. We have lived with many ups and downs - infatuation, love, breakups, death in the family (or pets), anxiety about various events (was a regular event for me, eg. exams), depression and personal crises.

I used to believe many years ago that stress and emotional events had an impact on how I feel. (Likewise I tried a number of different alternative treatments, like most people here I was willing to try many different things, regardless of the underlying science).

However it was over time that I discovered that there wasn't an association between my ME symptoms and my mood and emotions. Mood certainly had an effect on my behaviour, sleeping rhythms and the like, but not my underlying symptoms.

Apart from that, I agree that the speculation about whether someone 'really' had ME or not to be damaging. If someone is ill for years and they were diagnosed with this disease, we should generally trust that.

The only question is whether it was a spontaneous recovery, or whether it was due to the treatment. Spontaneous recoveries happen. But they are the exception, not the norm (and some relapse later, as some people on this forum can attest to).

 

[barbc56]

mind over body is best understood as in believing being hit by a train is as painful and real as visualizing it

Barb

 

[CantThink]

That's probably largely because sitting at a computer actually keeps you from getting better.

 

[heapsreal]

That's probably largely because sitting at a computer actually keeps you from getting better.

The intertwining of emotions with the body is very interesting. I too have been able to notice exacerbation of musculoskeletal pain and other symptoms in response to emotional distress, like being betrayed or heartbroken. Particularly the low back pain, or sacroiliac joint pain in my case. Many emotions have a bodily reaction. A kid gets excited they get bouncy and jump up and down, a threatening environment causes shallow breathing, heart rate elevates from all sorts of arousals.

I think the key thing everyone should consider is that everything in our body is connected to everything else. That means that even the slightest change in the little toe will alter the configuration of our brains, however small, and vice versa. I think the biggest thing to take away from the original poster's experience is to FEEL YOUR BODY. Become aware of subtle changes. Try working out exact cause and effects or patterns of experience. Your body is leaving a trail of bread crumbs for you. You just have to look for it.

Also, I see when people come up with cure stories here, there is a knee jerk reaction from many that s/he must not have had ME/CFS. From what I've observed, the effective cause of ALL chronic fatigue syndromes, minor or significant, are in the musculoskeletal system. Feel it.

Wow you sound like a psychobabbler.

is there a test or proof that emotions cause pain.

Maybe sitting down causes low nk function?

 

[minkeygirl]

Musculoskeletal system my ass.

 

[heapsreal]

Musculoskeletal system my ass.

Only from a broken heart??

 

[minkeygirl]

Yes broken heart = musculoskeletal problems = CFS

Why didn't anyone think of this sooner. If we get off the computer and sit up straight we'll all be cured!!

Feel it my ass.

 

[heapsreal]

Yes broken heart = musculoskeletal problems = CFS

Why didn't anyone think of this sooner. If we get off the computer and sit up straight we'll all be cured!!

Feel this!!!

Cancer comes from reading online news about terrorism. Oh and sitting up straight does improve immune function has the psychobabblers association did a double blinded placebo study showing this.

 

[minkeygirl]

Is that the APA? The American Psychobabble Institute?! Fine organization. Legitimate too.

My insurance wants me to see doctors in the APA because they are w fine organization

 

[heapsreal]

Is that the APA? The American Psychobabble Institute?! Fine organization. Legitimate too.

My insurance wants me to see doctors in the APA because they are w fine organization

Oh yes. There's this new therapy where you walk around with a book on your head. This improves posture and helps with poitive energy flow and can treat things like bells palsy.

 

[minkeygirl]

@heapsreal I wonder if my chiropractor will prescribe that to cure my sinus infection and psoriasis?

 

[heapsreal]

@heapsreal I wonder if my chiropractor will prescribe that to cure my sinus infection and psoriasis?

Probably but it would have to be a special book directed at your unique physiology.