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Bedridden for 11 years, he discovered a surgery for his adrenal condition

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Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#101

Post by cpncrunch »

wavepruner wrote: post #60
PragmaticPulp wrote: post #44

Earlier quoted context omitted.

> I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary? “Adrenal fatigue” is an alternative medicine diagnosis. It’s a seductively simple narrative for people seeking answers to unexplained medical issues, but the theory is very much pseudoscience instead of actual science. The biggest red flag for the adrenal fatigue theory is the claim t…

I've spent the last 15 years convincing my doctors, friends, and family that my physical symptoms are not just a manifestation from mental illness. It took me pushing myself to the point where I could no longer stand up. My legs felt like they were being ripped to pieces when I put weight on them. I had attempted all the psychiatric treatments recommended to me. None of them ameliorated the physical symptoms. Then I…

You should look at functional movement disorder, and catatonic depression. I'm not making any comment on your own situation, only on your comment that pushing yourself to the point where you couldn't stand up proves it wasn't psychiatric.

Typically people with ME/CFS/FMD get worse if they push themselves. The key to recovery is rest first and foremost. The symptoms of FMD seem to be a protection mechanism by the brain, and pushing through the symptoms just make it worse.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#102

Post by cpncrunch »

PragmaticPulp wrote: post #44
rubyfan wrote: post #32

Earlier quoted context omitted.

I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary? About 5 years ago I was fairly healthy, eating great and CrossFit 6 days a week. Then my body started to become tired all the time. I had pretty high work stress at the time along with what might be considered frequent physically stressful workouts. I suddenly found myself sleeping most…

> I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary? “Adrenal fatigue” is an alternative medicine diagnosis. It’s a seductively simple narrative for people seeking answers to unexplained medical issues, but the theory is very much pseudoscience instead of actual science. The biggest red flag for the adrenal fatigue theory is the claim t…

Just to add to the above: the reason that "adrenal fatigue" was coined is because stress does affect the adrenal glands: initially it causes increased release of cortisol and an increase in size in the glands, but chronic stress can result in hypofunction of the HPA axis, resulting in lower cortisol and sometimes shrinking of the adrenal glands. Whether chronic stress results in fatigue and low cortisol depends on the nature of the stressor, the time since onset, personality factors, etc.

http://dx.doi.org/10.1037/0033-2909.133.1.25

Unfortunately the "adrenal fatigue" crowd have taken this little bit of science and completely mangled it, blaming the adrenal glands themselves and pushing dubious supplements that have no scientific basis.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#103

Post by rubyfan »

PragmaticPulp wrote: post #44
rubyfan wrote: post #32

Earlier quoted context omitted.

I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary? About 5 years ago I was fairly healthy, eating great and CrossFit 6 days a week. Then my body started to become tired all the time. I had pretty high work stress at the time along with what might be considered frequent physically stressful workouts. I suddenly found myself sleeping most…

> I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary? “Adrenal fatigue” is an alternative medicine diagnosis. It’s a seductively simple narrative for people seeking answers to unexplained medical issues, but the theory is very much pseudoscience instead of actual science. The biggest red flag for the adrenal fatigue theory is the claim t…

Thanks for the perspective. As you said, it’s very tough in the moment to hear from the doctor that it’s in your head. When you’re physically ill and looking for real answers it really feels like a non-answer. To me as a patient that answer feels more like pseudoscience. It might be right or it might not be in my specific case, but when a doctor quickly gives up trying to diagnose a problem and suggests it’s in your head it’s an extremely invalidating experience.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#104

Post by vimy »

sjg007 wrote: post #99
vimy wrote: post #80

Earlier quoted context omitted.

They are wrong and are severely mismanaging Lyme. For example, the blood test endorsed by the CDC shows a 53 % sensitivity yet they claim testing is adequate. In reality, it's not much better than flipping a coin. They also claim there is no persisent Lyme. Here are two recent studies that contradict what they are saying. And that's just the tip of the iceberg. The Emerging Role of Microbial Biofilm in Lyme Neuroborr…

I don’t think your citations are sufficient evidence to discredit the CDC and NIH at this time.

The National Guideline Clearinghouse (NGC) is a federal agency of the United States Department of Health and Human Services responsible for providing the most up-to-date clinical guidelines to physicians. The NGC also removes clinical guidelines that are no longer relevant, that do not meet the Institute of Medicine’s standards for clinical practice guidelines, including a systematic review of the evidence, or that have not been revised in the past five years.

In January 2016, the NGC removed the Infectious Diseases Society of America (IDSA) guidelines on Lyme disease for these reasons. In a scathing report on the standard of clinical guidelines in North America, the Institute of Medicine specifically referenced the IDSA guidelines on Lyme disease as a prime example of what not to do. Now, the only evidence-based, peer-reviewed guidelines on Lyme disease that conform to (and exceed) the Institute of Medicine’s clinical guideline standards and are available on the NGC website, are the International Lyme and Associated Diseases Society guidelines for Lyme disease (ILADS). ILADS guidelines recognize persistent Lyme and have cured thousands of patients.

Meanwhile, the CDC is still promoting the ISDA guidelines that deny the evidence of persistent Lyme Disease. The CDC claims that these 2006 guidelines represent the "best science" and "the best synthesis of the available evidence". They do not provide the reference or criteria to substantiate this claim. And they are ignoring over 700 peer-reviewed articles that support the persistent Lyme theory.[1]

[1]https://www.ilads.org/wp-content/uploads/2018/07/CLDList-ILA...

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#105

Post by wavepruner »

cpncrunch wrote: post #101
wavepruner wrote: post #60

Earlier quoted context omitted.

I've spent the last 15 years convincing my doctors, friends, and family that my physical symptoms are not just a manifestation from mental illness. It took me pushing myself to the point where I could no longer stand up. My legs felt like they were being ripped to pieces when I put weight on them. I had attempted all the psychiatric treatments recommended to me. None of them ameliorated the physical symptoms. Then I…

You should look at functional movement disorder, and catatonic depression. I'm not making any comment on your own situation, only on your comment that pushing yourself to the point where you couldn't stand up proves it wasn't psychiatric. Typically people with ME/CFS/FMD get worse if they push themselves. The key to recovery is rest first and foremost. The symptoms of FMD seem to be a protection mechanism by the brai…

I won't. You don't know what you're talking about unless you have this illness and have a minimum of PhD level of understanding of biochemistry and enzymology.

I've cured myself. Who have you cured? No one I'm sure.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#106

Post by tnzn »

busyant wrote: post #87
barkingcat wrote: post #31

Earlier quoted context omitted.

Because doctors in the western medicine tradition don't always accept a patient's symptoms at face value. The person in the story got referred to psychiatry because medicine didn't believe him. Similarily, many legit medical disorders are discounted as not real symptoms by western medicine until decades later, for example, lyme disease, which is caused by a real organism with a real transmission pathway (ticks), with…

Why are you using the word "western" here? Are non-"western" healthcare practitioners exempt from biases and prejudicial opinions? I think it's fair to say that, like all humans, healthcare practitioners may have prejudicial opinions on healthcare matters that can lead to erroneous diagnoses. The western ones don't have a monopoly on this behavior.

Because this has to do with western medicine as a discipline and practice, in which we over-objectivized health care and the doctor/patient relationship is heavily asymetric. This leads to the fact that in most cases, doctors do not really listen to their patients, let alone believe them when they don't manage to find objective cues of a illness.

They easily discard patients' subjective experience. Recent research is calling for a change in that aspect, and change is slowly happening.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#107

Post by wavepruner »

cpncrunch wrote: post #101
wavepruner wrote: post #60

Earlier quoted context omitted.

I've spent the last 15 years convincing my doctors, friends, and family that my physical symptoms are not just a manifestation from mental illness. It took me pushing myself to the point where I could no longer stand up. My legs felt like they were being ripped to pieces when I put weight on them. I had attempted all the psychiatric treatments recommended to me. None of them ameliorated the physical symptoms. Then I…

You should look at functional movement disorder, and catatonic depression. I'm not making any comment on your own situation, only on your comment that pushing yourself to the point where you couldn't stand up proves it wasn't psychiatric. Typically people with ME/CFS/FMD get worse if they push themselves. The key to recovery is rest first and foremost. The symptoms of FMD seem to be a protection mechanism by the brai…

But yes, pain is how your brain protects your body. Pain means you need to rest before your tissues literally rip to pieces from a structural failure.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#109

Post by cpncrunch »

wavepruner wrote: post #105
cpncrunch wrote: post #101

Earlier quoted context omitted.

You should look at functional movement disorder, and catatonic depression. I'm not making any comment on your own situation, only on your comment that pushing yourself to the point where you couldn't stand up proves it wasn't psychiatric. Typically people with ME/CFS/FMD get worse if they push themselves. The key to recovery is rest first and foremost. The symptoms of FMD seem to be a protection mechanism by the brai…

I won't. You don't know what you're talking about unless you have this illness and have a minimum of PhD level of understanding of biochemistry and enzymology. I've cured myself. Who have you cured? No one I'm sure.

Yes I have had it, and am fully recovered now thanks.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#110

Post by cpncrunch »

wavepruner wrote: post #107
cpncrunch wrote: post #101

Earlier quoted context omitted.

You should look at functional movement disorder, and catatonic depression. I'm not making any comment on your own situation, only on your comment that pushing yourself to the point where you couldn't stand up proves it wasn't psychiatric. Typically people with ME/CFS/FMD get worse if they push themselves. The key to recovery is rest first and foremost. The symptoms of FMD seem to be a protection mechanism by the brai…

But yes, pain is how your brain protects your body. Pain means you need to rest before your tissues literally rip to pieces from a structural failure.

No, pain isnt always due to structural or physical damage. That is what functional pain is. In many ways it is much worse than physical pain.
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