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How to seek diagnosis/help for possible Ehlers Danlos Syndrome

Nana1318

Hi everyone,

I am writing this post to seek some advice please? 

I have been diagnosed with Autism at the age of 30. It was two years ago. Through all my childhood I have been a frequent patient in A&E  hospital departments in my home country due to constant sprains and other injuries. I still get these types of injuries often, I just don't go to the doctors anymore. 11 years ago I had an operation to reconstruct torn ligaments in my right ankle. Since then that ankle has been sprain endless amounts of time. Last time it happened yesterday and it's very painful, causing issues with walking etc.

I suspect I have Ehlers Danlos Syndrome. I have soft, stretchy skin that bruises easily. I sprain my joints all the time, especially ankles but it happened to my knee, wrist and fingers as well. Even my jaw 'blocks itself' sometimes for a moment and then goes back to normal, so do my fingers. When I was a child after one of my sprains, the doctor did the tests ( Brighton scale? )  to see if I have a joint hyper mobility. She said I do and she wrote it on my A&E note. Nothing was done about it because noone heard about Ehlers Danlos at that time, similarly like about Autism in girls/women. I get constant pains, especially in that right leg, but other joints too. After work ( I am a housekeeper at the hotel ) I often suffer from really bad backache ( sciatica?), to the point I dread moving my legs as the pain is excruciating and goes from my lower back through the bum to my legs( mainly right one). I also suffer from digestive problems and start getting varicose veins around my legs. My muscles are generally weak and it seems like I have decreased muscle tone. My right leg is visible thinner. 

I would like to ask for any advice how to get a diagnosis and possibly help/ treatment, please? 

Does anyone have similar symptoms? Does anyone have Ehlers Danlos diagnosis and how did you receive the diagnosis please? 

Last time I have approached GP to ask for help with my leg I have just received printed exercises which didn't help and it keeps getting worse.

Any help and advice or support from people who have similar issues is very much appreciated. 

Many thanks,

Ania

Parents

  • I hope your GP will take your concerns seriously as it sounds like you need support of some sort, be that physiotherapy or something else, whether or not you have Ehlers-Danlos. 

    I have experienced some of the things you talk about including the recurrent ankle sprains, ankle ligament reconstruction, joint dislocations and tendency to bruise easily. I have joint hyper mobility which has been noted by physiotherapists and my GP, but I don’t have soft, stretchy skin or any of the other things that would fulfil the criteria for a diagnosis. 

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  • I hope your GP will take your concerns seriously as it sounds like you need support of some sort, be that physiotherapy or something else, whether or not you have Ehlers-Danlos. 

    I have experienced some of the things you talk about including the recurrent ankle sprains, ankle ligament reconstruction, joint dislocations and tendency to bruise easily. I have joint hyper mobility which has been noted by physiotherapists and my GP, but I don’t have soft, stretchy skin or any of the other things that would fulfil the criteria for a diagnosis. 

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