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Ehlers Danlos syndrome?

Jul 02, 2017 4:02 AM

I've complaining for years about fatigue, low blood pressure (tunnel vision, needing to lay down if I stand too fast), and hyper sensitive skin. I was diagnosed with first depression and then bipolar without psychotic features. Medications for that never helped, and I've always needed double the dose of anesthetic for most procedures. I also had a fun party trick of bending in all kinds of weird ways, fitting into seemingly impossibly small spots. I sprained my ankle almost a year ago now, and using crutches caused my shoulder to chronically sublux and I spiraled down into worsening pain. I finally had an RNP I knew on social media tell me to get tested for Ehlers Danlos Syndrome. My old GP told me "joints just don't do that" and wouldn't do any more tests, telling me to just live with it. The rheumatologist didn't think I had it, and diagnosed me with fibromyalgia and an old name for type 3 EDS. He gave me a steroid pack for the pain. I went to the ER for pain the next week. They gave me morphine and a steroid, and I was back again when the morphine wore off, this time refusing steroids. Apparently steroids are terrible for people with EDS. I now have an appointment with an expert in September to finally settle if that is what is happening with my body.

Does anyone else here have EDS or stories about finding a diagnosis? Are you still trying to get one? How do you deal with clueless doctors?

Jul 02, 2017 5:11 AM

I have EDS. I have received my diagnosis from a geneticist already so I am no longer in search of a doctor who will listen and believe me regarding my symptoms. But I remember going through the diagnostic odessey and needing to "fire" several doctors who thought they knew my body better than me. One hint in your search is to be on a mission for relief of your symptoms and a reason as to why they exist. Communicate that while you may suspect EDS, you understand it could be something else and you are open to that potential and simply are seeking relief from your symptoms. If you maintain this approach you will find a couple good doctors who will listen and join your team. Don't waste your time with egocentric doctors who don't want to listen to you during a consultation. They are a waste of time and money.

Jul 02, 2017 7:18 PM

I just looked up EDS and it seems like it fits my symptoms way more than fibro. Is there any easy tell tell signs easy for us layman to understand. The reading was pretty clinical and scientific. Hard to understand. The pain , extreme flexibility,easy bruising, fragile skin, anxiety, stomach and intestinal issues all fit anything else that gives it away? I'm going to see a new doctor tomorrow, my second visit, and I'd like to bring this up ( little afraid to) but I'd like to be alittle better informed. Thanks

Jul 03, 2017 12:33 PM

RedOrchard: yeah, I am frustrated with Medications doing little to nothing and not having a good explanation for my seemingly strange symptoms. I have been told fibromyalgia a few times, but it's the joints and ligaments and tendons that hurt first. I can point to which one usually. Muscles hurt only after joints do for me. And right now it's mostly my right side as my weak ankle makes my knee twist and the shoulder that got bad from using crutches messes with my spine and elbow as muscles desperately try to compensate for how badly my shoulder wants to get away from my clavicle.
BrokenBlossems: It doesn't hurt to bring it up. Tell them how you found out about it. Many types can be tested for by a geneticist, except the Hypermobility type, from my understanding. That is tested clinically in office. It could be a good way to see if your doctor is willing to listen and engage, which is extremely important in pain treatment and pain management since they can't just measure pain.

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