Millions have the same 'bendy body' disease as my daughter. Why isn't the medical profession paying more attention?

submitted by Musky from (cnn.com)

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[–]iamonlyoneman 4 insightful - 5 fun4 insightful - 4 fun5 insightful - 5 fun -  (5 children)

Because a large part of the reasons EDS kinda is a fake white womans disease

[–][deleted] 4 insightful - 2 fun4 insightful - 1 fun5 insightful - 2 fun -  (2 children)

Its not fake, its a genetic defect in connective tissue from a faulty protein. I have this condition and I am not a woman. The hyperflexibility just helps identify it, people almost always have related complications such as serious heart issues because the heart has a ton of connective tissue. I personally have a condition called POTS that makes it difficult for me to maintain a high enough blood pressure, though other people have more serious complications

[–]iamonlyoneman 2 insightful - 2 fun2 insightful - 1 fun3 insightful - 2 fun -  (1 child)

EDS is like Life Threatening Nut Allergies: Some people have it, but not as many people have it as claim to have it for various reasons, by a factor of 100.

[–][deleted] 4 insightful - 2 fun4 insightful - 1 fun5 insightful - 2 fun -  (0 children)

Thats probably true, I have heard of people faking these kinds of illnesses. A shitty thing to do, as it makes it harder for real patients to get diagnosed and treated when doctors don't take these complaints seriously

[–]jet199 3 insightful - 2 fun3 insightful - 1 fun4 insightful - 2 fun -  (0 children)

So is long covid but that's in the news every day

[–]Musky[S] 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (0 children)

That's what doctors think, which makes it incredibly difficult to get treatment, such as it is. It's frustrating. There's three guys on Saidit with it, and you can't fake being hyper mobile. Additionally, there seems to be something with EDS and CYP2D6 metabolism, which means a lot of drugs don't work right. Can't fake that either.

Also, notably, there isn't really a treatment for EDS besides some not particularly fun meds than can help, and opiates are contra-indicated. It's a weird one to want to fake. I think we need to reevaluate the idea this is a commonly faked issue, and maybe not just more common than previously realized.

[–]tyranicaloverlord 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (1 child)

Sounds like the case of lack of muscle. Every thing they mention that is a problem can be remedied with activity and exercise. However, once to far gone the recovery period will be trying and seemingly impossible.

[–]Musky[S] 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 1 fun -  (0 children)

That's still the prevailing medical opinion, and that's part of the problem, because while it's sound advice typically, it doesn't work with EDS. EDS is a condition where connective tissue doesn't form right, so when that tissue is damaged, such as from exercise, it doesn't heal right, and that damage accumulates. I never felt as good as when I stopped exercising, the pain I used to experience would drive me half mad when the weather was bad. The loss of muscle isn't great, but it's the less awful alternative.

I might try to see if extended TENs use can help with the muscles without stressing the joints at all. There's a few other things I've been doing that have had good results, gua sha massage, dry needling, DMSO/MSM. Mainstream medicine hasn't been successful at EDS treatments so far, so all that's left is the alternative stuff, and veterinary medicine.