My ex was in chronic joint pain for years. She was told by leading medical experts that it was arthritis (before she was 30) and prescribed all kinds of arthritis medication and treatment over decades for it before giving up because nothing really worked.
When I started living with her, I spotted lots of problems she had with movement and joints and I had to explain to her that, no, it's not normal to hurt all the time, or to dislocate your shoulder by opening a jar of sweets. We googled around, and put a lot of footwork into avoiding quackery, and ended up discovering about hypermobility syndrome (now call JHS, where J = joint) purely by chance. The doctor had never heard of it and was interested in it up to a point.
Basically, her DNA codes a few dodgy things that make her cartilage weak. Most people have JHS in some form or another but if two people with particular bad cases coincide to make a child, the child is *generally* worse. There's also an even worse form called EDS where sufferers are in a wheelchair from birth.
This gives some sufferers chronic pain from being a baby while others just become good ballet dancers (huge amount of flexibility in the joints, which *can* wear the joints to the point that inflammation of tissue and joint damage results). My ex was a professional black belt karate instructor throughout most of her painful years (because flexing joints made them no worse, and was not a way to induce the pain - a clear sign that it *wasn't* arthritis from the very start.
In the end, we gave up on all the doctors she'd had previously, and researched it ourselves. We hit at random upon a rare condition that had almost zero information on it at the time. Apparently there was one guy in the country doing research on the condition when we discovered it (and other sufferers we met up with describe him as one of the most arrogant and ignorant doctors they'd ever met - telling tiny slips of girls that were not far off transparency that they were obese and he wouldn't treat them, etc.).
We FORCED her current doctor to refer us to a specialist. We were referred to a consultant who dealt with arthritis. However, he was bright enough to look and say instantly "You don't have arthritis, you have hypermobility" and write us off with a confirmed diagnosis that the doctor would at least accept to prescribe more suitable medication for (i.e. not arthritis medication which worsens the problem because the condition is the polar opposite of arthritis).
Beyond that, she never got much help and still has the condition. Variably over the years she's been registered disabled and able to run a karate club (though not simultaneously - the condition is always present but the severity varies greatly with seemingly random triggers and even things like the weather).
Bear in mind that all this happened in a country with free healthcare.
- Doctors can't know everything.
- Even those that are specialised in your area might not help you at all.
- Even those who want to help often can't find out enough to get you to someone that helps.
- Even those with a real interest on the cutting edge of research may be able to do no more than prescribe a painkiller and sign a form for you.
- The human body is more complicated than any one person, or even group, can ever understand.
But, that said, we went to great lengths to avoid quackery. At a residential weekend for sufferers, there was one true doctor who gave a short 10 minute presentation and then tried to escape before he got hounded for everyone's personal problems. 50% of the rest were salesmen trying to flog memory foam pillows and other junk to "help your condition". The other 50% were nothing more than charlatans (I shall never forget being in a Reiki healing class for moral support - against my will - and there being a ten-minute interlude between the instructor and a student where one "saw colours" with her eyes closed and then they discussed how insightful and "in-touch" with Reiki that made her while
Source: http://rss.slashdot.org/~r/Slashdot/slashdotScience/~3/j2xsn1VMb0c/story01.htm
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