Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice. I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
Just a short event worth mentioning when not only battling EDS but also the medical part. It illustrates how doctors sometimes get stuck in their own knowledge and actions by not wanting to listen to a patient.
One day, when I was 37 or 38, I stepped out of the shower and suddenly a flash of pain struck my hip. I couldn’t walk anymore and I panicked. The next day i went to my GP and he referred me to an internist. He just said: ” Oh yes I see, can you tell me where exactly it hurts? ” I said yes: Inside my hip it hurts. ” No, he said, I mean more on the left front, back or right side? ” But I couldn’t tell him, what can you say when you feel pain on the inside? There is no front or back, no matter how hard I try. But he was very persistent, wanted to know where, and got even mad at me when I couldn’t answer. My nature is that I started doubting myself. Of course when you are in pain, pain spreads, and it is not exactly to be pinpointed at one spot. So out of despair I just pointed out a spot on my hip and the doctor was very pleased. He said it was probably just this or that muscle and that it will get better by itself.
Back home I got mad though. He got me to point out something that wasn’t about the pain I felt. He didn’t want to listen and I wasn’t capable of fighting his persistence. The diagnosis: ” Oh, it will be better ” I could have done it myself. I didn’t go there because I thought I was dying, sure it would get better eventually. Now I know it was my hip that was dislocated out of itself for a moment. Therefore the pain within.
After that one time it didn’t happen to that extent anymore. But often, especially after sitting still i have loose joints, putting pressure when for instance standing up often hurts.
Living with Ehlers Danlos Syndrome 