#ehlers danlons

[virtuallyinsane]

Hi all.

Decided to share lil bit of my story. Dedicated to those who suffer chronic illness. You are NOT alone. It's fucked up everywhere in the world. There is many of us and our stories are important.

I started my "let's really find out what the fuck is wrong with me" journey a long ago after my body slowly refused to work as it should. There was a lot that went on in my life at that point, but let's focus on the physical health. I suffered a collapse and a burn out.

During the past few years, I was misdiagnosed several times, I was given wrong medication because of it that made things worse to this day.

I suffered a lot of trauma by people around me saying I am just lazy and sensitive and by literal doctors saying the same thing, making me seem like a typical archetype of hysterical woman. They told me to just have kids, it will be better... They told me let them lock me up to psych clinic to help me... they tortured my mind and my body for a long time while whatever was wrong with me, just kept getting worse and my body was hardly able to function in day to day life anymore.

Until recently. I got help from an organization focusing on these kind of situations and after some more doctors appointments, I was told I have Ehlers Danlos syndrom with a few other diagnosis that my body developed because of that. I have one of its hypermobile forms that fuck up joints, connective tissue in my body, including some internal organs that don't function properly anymore and cause more pain and discomfort.

Well, at least I know what's wrong and I can adjust. Somehow tho, the doctors still refuse to help more than the bare minimum and give me advice such as "don't do sports" while me considering having a wheelchair because I can't walk much anymore, bitch what?!

Anyways, there's a long journey ahead of me still. I need to go to the private medical sector, because even tho I have an insurance, there's no real help in the system. Life is lifing.

To all of you that made it here, thank you for reading and remember if you suffer, you are not alone, please continue fighting because you are worth it.

[wanderingzebrasalvage-blog]

Found a recent study that showed some seriously strong evidence that hyperalgesia is a common neurological issue with Ehlers-Danlos HT, which explains so much about so many things.

In the study, they tested 23 zerbras and 23 age & sex matched non-zebras. The zebras felt more pain from less stimuli than those without EDS. All of them. Across the board. By a factor of almost double. On average, people with EDS felt pain from a little over half of the pressure required to elicit the same pain response in the brains of people without EDS. That’s not to say that people with EDS have a lower pain TOLERANCE, by the way- it means that we are literally feeling MORE PAIN from pressure than other folks.

This explains a lot. Like how it is that other people can walk in high heels for more than ten minutes. Or why most people don’t cry after wearing a bra for 6 hours. Or why nobody else seems as angry at car manufacturers for making torture devices and calling them “seat belts.”