Ehlers-Danlos Support UK
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Does anyone else feel like they're going crazy waiting for diagnosis?

I'm curious. I have been having major issues for years and I am certain now that I have EDS. I suffered with joint dislocations and hyper mobility syndrome. Now since this started when I was 12 years old I have had the term EDS thrown round ALOT!

It wasn't until earlier this year when I researched for myself that I became certain. I have GI issues, horrific acid re flux, joints that simply won't stay in place, chronic pain. Plus several other symptoms that are consistent with EDS. So I decided to start trying to get help.

This is where it gets hard. I struggle with painkillers, my doctors have put me on two strong ones that I had a horrific reactions to. I tell this to my GP's and they act like I'm a junkie trying to get a stronger fix. That or I get a condescending doctor who gives me pills to use 'when needed' - after I tell them specifically that I have CHRONIC pain.

I am starting to feel so disheartened and unsupported by medical professionals that it's led to me honestly thinking I'm mental. That I'm some how imagining all these symptoms or I'm blowing them all out of proportion to be dramatic. I feel stupid amounts of relief when I get a bad dislocation or a stong physical symptom other than pain, because I have started doubting myself so much. Did anyone else experience this? I had one doctor give me a very patronizing look when I told them I had started using a cane, so they clearly didn't believe me when I said the pain was horrible.

2 Replies

You're not going mad I promise you and many doctors are as you explain. I spent many years being told the pain was in my head and wasn't real. Pain meds don't work either which didn't help. Things got really bad 16 years ago during pregnancy but symptoms were clear during childhood. I have gastric, bladder, and womb issues and every joint apart from my elbows are affected.

I was finally diagnosed 3 years ago, aged 40, and it was a relief to be believed. They finally started to take the internal issues seriously and I'm now awaiting bladder surgery and have Gastro and gynae involvement too. Unfortunately rheumatology is a lot more difficult to get in front of and I'm still waiting for a further appointment as they tend to refer you back to the GP rather keeping you on their books.

I found out recently that I had been diagnosed with fibro at the same time. That explains a lot more.

You may have to fight for recognition but if you're really struggling then try to see a different doctor. I use JHS and EDS as much as each other as some know one and not the other.

I hope you get some support soon. X



Most of my symptoms started at about 12 that is when I started painkillers.

Please read my other posts as I am sure they will help.

I eventually got diagnosed at 35, I listened to my doctors and ended up nearly dead!!!!

I was on the strongest pain relief available oramorph plus patches then numerous other meds were added I ended up house bound, unable to walk and 6 stone (3 stone under weight)

I became qualified as a holistic therapist and after some very horrific withdrawals I now use Fresh homemade juices, supplements NO medication. My pain is under control, I can now walk with a stick and I now teach swimming once a week. All my children also have EDS/JHS and all of them are treated by me with the same.

Take care :)


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