Ehlers-Danlos Syndrome Support Group

Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.

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/ Ehlers-Danlos Syndrome Support Group

New and discouraged

missingfiber759
missingfiber759

Hi, 


I am new to the EDS community and was just diagnosed back in April after having symptoms all of my life.. my health has been getting progressively worse as I have had a job in the medical field and it takes a big toll on my body. I have been having such a hard time accepting this condition and am feeling very discouraged on what to do as my new medications have barely given me any relief. I feel like I need to leave my job to get relief but I have no clue what to do.. I have been looking into support groups in my area, but it doesn’t seem like any exist anymore. Anyone have any suggestions on how to cope with this condition and any job suggestions that aren’t harmful to the body? 

GenuineMystery
GenuineMystery
Hi. That's an unhappy but hardly unique story. I've even talked with some people with EDS who have worked in healthcare. It's hard to give recommendations because only you know what your particular skills are, but I do know that telemedicine is increasingly popular.

I don't mean to be glib about "how to cope with this condition," but for many people a long period of physical and sometimes occupational therapy and maintenance exercises (usually resistance or weight-bearing), plus some changes to self-care (mostly sleep and diet) can make a big difference. Don't overdo it like me and permanently damage your body.
missingfiber759
missingfiber759
Thank you for your honesty and wisdom.. Your last comment is exactly what I am worried about especially with the constant slipping ribs and joints I will end up permantly damaging myself having a physical job. I am trying to figure out what exercises are safe still. I do agree though the changes I’ve made in my diet and self care habits have definitely given me more relief and a more positive outlook... just still trying to figure this new reality little by little each day.