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The Downside of Connected Healthcare: Cyberchondria
MollsEisley writes: Like hypochondria, cyberchondria is simply a more elegant way of saying "it's all in your head" — only in this case the people self-diagnosing are using tenuous data gleaned from the Internet and our ever-connected gadgets to support their hypotheses. Virtually everyone who has put the Microsoft Band through its paces has come away with the claim that its heart rate monitor is simply bad. ... The Moto 360’s heart rate monitor doesn’t fare much better, and in only the most perfect, motionless conditions will it provide anything close to an accurate reading. These are horribly inaccurate health tools, yet they are used as bullet points for would-be buyers to cling to. ... Even WebMD—the service that has given so many cyberchondriacs the fuel to continue guessing—has a note on every single one of its countless pages that states the site “does not provide medical advice, diagnosis or treatment.” And yet, that’s the one and only thing most people use WebMD for.
My ex-wife had a serious, debilitating condition that saw her in chronic pain and sometimes housebound.
It was only when I met her and realised that there was something wrong that I asked her about it and she realised it WASN'T normal to be in constant pain, unable to walk. But there was more than that. The doctors had put her on painkillers, antidepressants, sleeping tablets, etc. to try to ease the symptoms but nobody had actually bothered to diagnose it.
And there were odd things. Her joints were in constant pain but, when she wasn't hurting, she was able to do karate moves that Jean Claude Van Damme would be jealous of. She had an extreme range of movement. And when she was in pain, things like her knees and elbows would GO BACKWARDS, making it even more painful to do anything and making her unable to walk.
We looked up the symptoms. The first batch of hits was Hypermobility Syndrome (now called Joint Hypermobility Syndrome). The list of things is gave as common side-effects and symptoms fit perfectly, as well as a number of things that until we read them we didn't think were related at all. It's a genetic defect in the way collagen is made, which gives so many odd and unrelated symptoms that it stands out by a mile.
We printed everything off, went to the doctor. He was astounded. He'd never heard of it. He'd never realised she had the range of symptoms available to match it even if he had. He sent her immediately to a consultant specialist. In two minutes, and a simple joint-range test, he said "Yes, you have hypermobility". Within a month, she was able to claim disability. Within a couple of years, she was managing the condition and had enough support to return back to work and live a pretty normal life (even teaches karate). Because now she KNOWS what she has, she knows what to do and what not to do, and has constant, background medication of the right kind to combat the pain. At one point, she was going to be put on morphine to stop the pain because they just didn't know what it was.
It was that easy. And it wouldn't have happened without a bit of Internet research. She'd suffered for nearly 30 years with it without any diagnosis (once she was told she might have arthritis - which is an extremely common misdiagnosis of hypermobility symptoms - but they excluded it because, well, she could move her joints more than anyone else!). And she'd had suffered at least several more if we hadn't bothered to check symptoms.
Doctors aren't perfect. Don't just assume they are stupid, though. But only you know your symptoms, only you have the time and effort and impetus to find out what you have (especially if you live in a country where doctors get paid by the test, fucking disgusting), and only you are the one who will benefit if you find out what you have.
The doctor was great, once he knew we were right. He was supportive and immediately helpful. He just didn't know about every condition on the planet. And although she has a diagnosis, there is no real prognosis - the condition never gets better, but at least you can manage it. The consultant basically diagnosed her and then that was it - there's nothing you can really do, medically, to "fix" it.
So don't be a hyperchondriac and think you have everything. But if you're certain something's wrong, and you find something that matches, see what the differentials are and see if you can't get it eliminated. At the very least, if your doctors note that you asked about it and they said it "couldn't be" that thing, then you have something to go and push in their face when they turn out to be wrong. But more likely, they will try to appease you that it's NOT that thing, run a few tests, and therefore get you closer to a real diagnosis.
Internet research isn't useless, if you have half a brain.
Physicians don't do diagnoses like they used to. They look at you, consider your condition for all of 5 seconds, and prescribe whatever will get you out of their hair. They don't diagnose, they don't think, they don't care. When I had my condition a couple of years ago, one of the doctors actually asked me what tests I wanted to run. I was like, what the fuck, how the fuck should I know? But that's how it is. So what is there to do? Do your own research on the internet and become your own pathologist. :( And unfortunately there are tons of spammer optimized-for-google pages out there for every medical condition in the world. They all have a few paragraphs of useless copy and tons of ads inline. Go to a forum? It's all the same, pages of questions and few answers. So you have to spend tons of time learning about your symptoms from the ground up, and then try to guess what you might have, and then go ask a doctor for those tests. Good luck diagnosing yourself, because doctors don't do that shit any more.
Shutting down free speech with violence isn't fighting fascism. It IS fascism!
TFA is a naked propaganda from the medical profession
They made up a new term by attaching "cyber" to one of their existing term to denote the 'foolishness' of their patients
But on the other hand, the medical profession themselves never - and dare not to - tell the world how many patients they have killed, either due to mis-diagnose, or wrongly prescribe medicine to their patients
I won't mention any other case other than one that happened to my dear old dad --- he has high blood pressure and every single day he has to take medicine to put his blood pressure back into the 'normal' range
One time a doctor (not the same doctor, but another doctor) prescribed him another medicine (for what I forgot) and when he took that new medicine with his high blood pressure pills his blood pressure shot way up, to 200 over 160, or so
Alarmed at that all the other members my family were about to rush him to the hospital, I gathered up all his medicine and ran a check online
Long and behold, the new medication, as indicated by many online sites, can *NOT* be taken with the type of high blood pressure medicine that my dad was taking
I asked him to stop taking that new medication, and within 8 hours his blood pressure dropped back to his 'normal' range (by only taking his usual high blood pressure medicine)
Yet, the medical profession tried to imply that people like me who checked information online are 'cyber' whatever
I rather be 'cyber' whatever than put my blind trust on anyone, especially those who could - intentionally or not, - prescribe me medication that can burst my arteries and veins
You didn't mention the actual condition (apart from the joint hypermobility syndrome) but the fact that you said it is genetic defect affecting collagen makes me think the condition is Ehlers Danlos Syndrome.
As someone who has been in a similar situation for all of my 26 years of life, and also managed to self diagnose after a lot of research, I can completely understand this. I too did not know that it wasn't normal to be in chronic pain all the time until a few years ago... the search for a reason began. It wasn't until my own research led me to joint hypermobility syndrome, and then onto Ehlers Danlos, that anyone even bothered to pay attention. Almost all of my joints bend backwards, my skin is super stretchy and I have many other related symptoms (that in and of themselves do not seem to point to something larger... until you connect the dots)
I have sat in countless Drs offices and explained my symptoms, and been told it was all normal. It wasn't until about a year ago that I actually told a GP to google Ehlers Danlos and check off my symptoms against the lists described on various websites. Sure enough... he sent me to a specialist straight away, and, just like your wife, it turns out there actually was something wrong.... Ehlers Danlos Syndrome.
Since then I have started exploring treatment options, some of which are helpful, others not so much. I also will probably be in the situation where I have to apply for disability while I try to stabilise my condition and get myself back on my feet and figure out my long term plan, but like your wife, atleast now I know what to do and what not to do.
It is reassuring to know I am not the only one in this situation, and I am glad to hear of the positive outcome you have had when dealing with such horrible problems. I feel for your wife and the pain and suffering she has endured over the years but I am filled with hope that she is now coping with her condition and leading a much better life.
Thank you for your post. After a day filled with specialist appointments (a few of which I had to explain my condition to) it is good to know that there is light at the end of the tunnel, and that you, like me, found self diagnosis to be useful in what is a very rare and obscure condition (that many Drs have not even heard of).
All the best and thank you to you both, from another 'bendy' individual