I know I've shared simple explanations of EDS and how to get diagnosed, but for those of you that have a diagnosis or just want to learn more, here are 2 videos that are a must to listen to. Even with all the information I've found out and research I've done, I still learned a ton of things I didn't know when I listened back in May.
For my friends in other countries, unfortunately they don't have the
above videos in other languages, but the Ehlers-Danlos Society translated their 2020 Summer Virtual Conference
and there's a ton of great speakers about EDS & comorbidities. If you'd like
to read any of the paper and articles below, you
can enter the link into this page -> https://www.ehlers-danlos.com/2020-virtual-summer-conference/relive-our-2020-virtual-summer-conference/ (and then just pick your language to translate).
Best paper to read:
This
one hit it on the head when they talk about the Pain Toolbox. People
don't realize when EDSers are just trying to get pain at a reasonable and
functional level and understand it will never be a 0%, but would like
it to be under 85-95% even with all the other
things they are usually doing - Epsom salt baths every night, heating pad when at home,
yoga and breathing, pilates and strength, visceral manipulation, physical therapy, pain
medication, supplements, diet, prayer and inspiration, writing, and of
course just mental willpower: (make sure you scroll to bottom of page after clicking link 👇)
Last article is about pain management and I finally learned last year that my normal
just tough it out actually causes more pain. Even after I realized this, I was still guilty of letting
my pain get out of control because I hoped that maybe it would just all of a
sudden be gone so I'd try to go without any medicine:
“At this point in time, I put EDS in the category of being in the top three or four most severe pain problems. A lot of people for example think that cancer pain is the worst of pain, but let me assure you that many EDS patients have pain far beyond any cancer patient I’ve ever seen. And so it’s one of the pain problems that is severe, has been very troublesome, many physicians are afraid of the disease and of the kind of the pain that EDS patients have.”
Dr. Forest Tennant presents “Managing Intractable Pain in Ehlers-Danlos” Published on Apr 8, 2015 https://www.youtube.com/watch?v=pLw29ndmLcA
(He started out primarily treating cancer patients, as a specialist in intractable pain.)
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