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Ehlers-Danlos Syndrome Online Support Group

Need help coping!


#1

I have been in pain for years having head aches chronic back and neck pain and really bad pains in my legs from wearing a brace that I most likely should not have even tried because now my legs are killing me all the time! The rain is especially hard for me and I don’t know how to cope with something like this. I tried to tell my mother that I was having pains ECT when I was younger and she did not believe me so I never went to the doctor to help find out about what was going on. Now I’m 24 and figuring out I’ve had this my entire life and she could have helped me to have a better quality of life if only this would have been caught sooner. I’ve been told by my doctor some people don’t have pain with this type of EDS while other people have chronic pain. I sit with the heating pad on most days and I never want to do anything it hard for me to even find a job because I dread being on my feet for to long because I know the next few days I will feel a thousand time worse than I normally do. I have subluxations in my neck scoliosis my disc are dessenigrating and on top of that I also have fibromyalgia my muscles in my shoulders are constantly on knots and my legs hurt so bad I only sleep about 2-4 hours a day a lot of the times I’ll go 3 days and have only slept 8 hours. I find myself always being angry at the love of my life and lashing out and constantly crying no one understands what I’m going though and I don’t know what to do. It hard to accept I’m only 24 I feel like I’m 80 and it’s only going to get worse. Is there anyone who has some advice for me or feels like I do I know things could always be worse but it’s pretty bad now and it will get worse I didn’t feel anything like I do now 2 years ago. Please help, thank you!