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Yeah, I'm sick. Read all about it

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Re: Yeah, I'm sick. Read all about it

#61

Did you take flouroquinolone or other bacteriocidal antibiotics, or take statins/steroids? These things are known to cause mitochondrial disorder which can manifest in lots of ways but the predominant similarities are pain, fatigue, and improper response to exercise (it taking a toll on you as opposed to making you stronger). Edit: They're also pretty much ignored/under-represented by the medical community. I suppose…

I took 4/10 doses of levofloxacin 4 years ago, and it was just horrible. The symptoms were very similar to what OP described. Mine cleared up 90% after about a year, but continue to persist in small ways. I had an excellent rheumatologist who helped immensely through the situation (he had seen a lot of joint and tendon issues in his long career), but most doctors that I went to see dismissed the suggestion outright (including the GP that prescribed it).

Re: Yeah, I'm sick. Read all about it

#62

Earlier quoted context omitted.

Pseudoscience is a non-scientific practice which people ~generally assume~ to be scientific. There are many areas of philosophy which people believe are done via science. I'd say metaphysics is a pseudoscience because people assume it's akin to physics. Most modern psychology (not all of it, and not psychiatry) is based on Freud and Lacan's psychoanalytic practice. This practice people generally assume to be scientif…

I like that you're debunking Psychology for what it is, but if you still think Economics is a science, you're not quite there yet. For something to be a science it needs to make falsifiable claims. Nothing in Keynesian economics is falsifiable, and in fact following the news and watching them pulling excuses out of their hats is an endless source of entertainment to me.

I agree with you that the hallmark of what is "scientific" is "falsifiable claims through inductive reasoning."

But if this is the case, then economics and sociology are both pseudosciences; they're wrongly called "social sciences" though they are not falsifiable!

Re: Yeah, I'm sick. Read all about it

#63

What's the best way to deal with something like this as a friend of someone with something remarkably similar? I have a close friend who's always going to see specialists with some ailment or another. One of the things he has is low magnesium and zinc just like this author. He's also suffered from bouts of unexplained amnesia (is that where the author got the name for his blog from? If so maybe they actually have the…

So, I'm going to assume we're talking about a real condition here. This is because that's the first thing you can do: believe your friend when he tells you he's sick. He probably has doctors, family members, and peers constantly not believing him. Just having someone not question it can help a lot.

Second, you can't force him to change his life around. If someone honestly believes something beyond their capacity (physical or mental), you're not going to be able to coax, reason, berate, intimidate, or threaten them into doing it. What you can do is inspire them. Give them a reason to wake up just a little sooner, like a shared activity that you both enjoy. "Let's have a match of before I go to bed tomorrow", or maybe "I'm making X for dinner, I'll make extra for you if you're up". Try something like that.

Small steps are best to start with. Trying to force someone in a big step will probably cause a panic reaction. A confrontational approach will probably do the same thing. A panic reaction is not what you want.

Re: Yeah, I'm sick. Read all about it

#64

Did you take flouroquinolone or other bacteriocidal antibiotics, or take statins/steroids? These things are known to cause mitochondrial disorder which can manifest in lots of ways but the predominant similarities are pain, fatigue, and improper response to exercise (it taking a toll on you as opposed to making you stronger). Edit: They're also pretty much ignored/under-represented by the medical community. I suppose…

I took 4/10 doses of levofloxacin 4 years ago, and it was just horrible. The symptoms were very similar to what OP described. Mine cleared up 90% after about a year, but continue to persist in small ways. I had an excellent rheumatologist who helped immensely through the situation (he had seen a lot of joint and tendon issues in his long career), but most doctors that I went to see dismissed the suggestion outright (…

90% gone after a year? Are you capable of exercising at mostly regular capacity or computer-ing all day now? I need some sources of hope :o

I had 5/10 doses of ciprofloxacin and I seem to be having mad difficulties (3 months in).

Re: Yeah, I'm sick. Read all about it

#65
Ok, guess this is share and tell day...

When I read this article I just think of someone that seems to be keeping themselves down.

But the truth of the matter is that many people that are very sick and in a shit load of pain or even dying are still out busting their asses on a daily basis doing their work come hell or high water.

I'm not saying this from the perspective of some outsider, I am one of those people; I'm one medically screwed up piece of work.

Here is a list of all of the various diseases/syndromes I have been actually medically diagnosed with.

Type 1 Diabetes

Stiff person syndrome

Abnormal antibody syndrome

Benign fasciculation cramp syndrome

(This one is really a load of fun. Basically this means I have severe muscle spasms all over my body; sometimes so bad that I will fall or injure myself and flop around looking like someone with epilepsy. Unlike epilepsy though, this is not a seizure, so when it happens I'm awake for the whole damn thing. Is a god damn riot. Seriously wish I could whip this shit out on demand I'd be the life of the party. The "benign" part just means "this one's not fatal".)

Alopecia

Hashimoto's disease

Asthma

Autoimmune arthritis

Autoimmune polyglandular syndrome, Type 1

My kitchen cabinet looks like a pharmacy because I'm on so many damn drugs, between the muscle relaxants, pain killers, insulin, and more. I'm on the top shelf stuff, the kinds of prescriptions where the doctor still fills out the prescription on real paper because it's required by law since this shit is so powerful and so addictive.

Add to this I have health problems that can't be accounted for by the things the doctors have been able to pin down. Like the fact that I can't stand up to fast or I'll pass out; they know it's because my blood pressure drops way too low, but they still can't figure out why. Or the fact that I sometimes suffer temporary paralysis. Imagine waking up and not being able to get up; I'm not talking about where your arm fell asleep because laid on it and cut off the circulation. I'm talking about waking up and laying there for an hour unable to move or even speak; trying to moan or make some kind of noise until my wife finally wakes up so she can lift me out of bed and move my limbs around until they start working again.

I've had doctors visits where the doctor told me it was a miracle I hadn't been brought in on a stretcher, and visits where they've told me that (and I'm going to have to paraphrase here), as bad as I am they just don't know how much longer I have.

On my good days I'm on muscle relaxants and pain killers and I still am in horrible pain throughout my whole body. There is the pain that is always there and then there are the shootings pains that double me over, or my muscles locking up to where I can't move. And those are the good days; where I get my ass out of bed and go to work anyway. Every 3 months like clockwork I go back in to the doctor and they look me over and run tests and occasionally they will bring in some young new doctor and tell them how "interesting" of a patient I am; and just in case you are somehow unsure you don't ever want to be an "interesting" patient.

On my really bad days I call in sick to work and then I take enough pain killers and muscle relaxants to knock myself unconscious and I just pray for the pain to get a little better.

Everyday I wake up, I breathe a little sigh of relief that I lived another day. Then I get off my ass and get back in the game, because today really might just be my last.

Re: Yeah, I'm sick. Read all about it

#66
I also have pretty significant health issues, not anywhere near as bad as this person, but life-impacting. People do have a tendency to just think you are lazy, even after you have explained your condition to them. For example, sometimes I have a lot of trouble getting up early or even at a normal time. People would tell me I need to get to bed earlier when I actually went to bed at the exact same time as them and woke up feeling exhausted and had to go back to sleep.

There are lots of things that cause fatigue and other issues that can be practically or actually debilitating but either don't have a diagnosis or don't have a diagnosis that sounds bad enough, and people decide to blame the victim.

Part of that might be giving too much credit to doctors.

Re: Yeah, I'm sick. Read all about it

#67

This is a very unfortunate story, and it's also very unfortunate that the author hasn't been helped by medical science. The author's subjective suffering should not be up for debate. Idiopathic pain and fatigue disorders are impossibly frustrating to diagnose and treat, and have a tremendous negative impact in a person's quality of life. That said, this post has many hallmarks of pseudoscience, and I'm afraid that th…

I am skeptical that his explanations are completely pseudo-scientific and have no basis is fact. If these explanations sound unscientific, I think it is more likely that it from the author simplifying the explanation of his problem, and perhaps he is confused about or is miss-communicating what his doctors have told him.

  One person, who I was living with to shorten my commute to the hospital, which I was visiting three days a week for treatment ...
Getting treatment at a hospital implies that doctors identified some known medical condition they could treat.

  My body retains toxins—and not, like, generic “toxins” that health nuts talk about, I mean real toxins, like benzene and mercury.
If there are tests for benzene and mercury, this could indicate a medically detectable problem. He also seems to dismiss the pseudo-scientific explanation of toxins.

  My body rejects things it should keep, like magnesium. Especially magnesium. Also zinc.
Again, if there are tests for this, there might be some truth to this.

It is unclear how much of his description of his medical problems is known for certain, or how much of this is speculation. He admits that he "barely understand"s it. I would like to hear a medical explanation for why his explanation is impossible or problematic before concluding that it is simply pseudo-scientific gobbledygook.

Re: Yeah, I'm sick. Read all about it

#68

This is a very unfortunate story, and it's also very unfortunate that the author hasn't been helped by medical science. The author's subjective suffering should not be up for debate. Idiopathic pain and fatigue disorders are impossibly frustrating to diagnose and treat, and have a tremendous negative impact in a person's quality of life. That said, this post has many hallmarks of pseudoscience, and I'm afraid that th…

[deleted]

Re: Yeah, I'm sick. Read all about it

#69

This is a very unfortunate story, and it's also very unfortunate that the author hasn't been helped by medical science. The author's subjective suffering should not be up for debate. Idiopathic pain and fatigue disorders are impossibly frustrating to diagnose and treat, and have a tremendous negative impact in a person's quality of life. That said, this post has many hallmarks of pseudoscience, and I'm afraid that th…

As someone who also suffers chronic health issues with no full relief (yet) from the mainstream/alternative/mental health fields, I would like to just toss out this out for the original poster.

You should really look deeply into your diet and do a lot of research. This site: http://selfhacked.com/ is the first I've come across that has begun to enable progress for me. For example, I found out about longvida curcumin from it, and it's been the single most helpful thing I've ever taken (pharmaceutical or natural) to help with my inflammation issues.

Everyone is different; some people's issues may be psychosomatic (for me, my issues begin in the GI tract and cause issues throughout my body), but as someone who's run through the system, it really illuminates just how little modern medicine really knows about the body.

Re: Yeah, I'm sick. Read all about it

#70
post #57

Earlier quoted context omitted.

>Try to take in that message first, and when you think you have the slightest idea what it's like to live like that, maybe you are then qualified to add a response. How ridiculous. Just because a person isn't suffering or doesnt have a true understanding of the same agony as the blogger, doesn't mean they are not allowed to offer help. Whats so wrong with people trying to help? Should we just say - "Thanks for the in…

> "Whats so wrong with people trying to help?" Because most of the 'help' is in the form of unsolicited advice, well-intended as it might be, and tends to be naive, unhelpful, disheartening, demotivating or downright insulting. OP outlines what that feels like: "These people are, in most aspects of their lives, good people. Honestly, couldn’t recommend them enough. But where my illness is concerned, they felt they ha…

As someone with numerous debilitating diseases myself; the whole thing just doesn't ring very true with me. It was a 6 year process of being moved from specialist to specialist and every test you can imagine being run to understand what was wrong with me.

During that whole time almost everyone I encountered was very sympathetic and understanding.

It is also difficult as a patient not to be jaded. There are "patients" out there trying to scam the system that just want some doctor to sign a disability claim so they can collect a check without getting a job. I've met numerous individuals where this is the case. Then I see the doctors and they keep telling me that I should consider going on disability or find a less stressful line of work, because of my health. They tell me that it is only a matter of time before things get so bad I will no longer be able to make a choice.

I have a friend that has terminal cancer who plans to work until he dies. There are plenty of desk jobs; if this guy can sit up playing video games and such; he can likely hold down a job.

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