16d
2
Hi POTS peoples! How many of you also have been diagnosed with EDS? And if you were, how did you get that diagnosed? I’m currently seeking a diagnosis, and I’ve found it’s very common to have both
56d
0
Hi everyone. My doctor thinks I may have hyper mobile EDS on top of everything else. I was wondering if anyone with this condition experiences pelvic pain and kind of pins and needles pain down there? That is why my doctor thinks I may have this as well but I wanted to get some info from the source! Thanks!
63d
1
I've been having heart problems that my doctors think could be connected to my EDS. I have a normal resting heart rate, but when it raises due to excersice, standing, sneezing, stress etc it goes way too high causing nausea, dizzyness and pre-syncope and has been in the 170s when I'm just walking from one room to the other. I've had my heart rate and blood pressure taken when sitting and standing and they don't think it's postural, so have booked me for a 24hr HR and BP trace. what else could be causing this and what can I do to help calm it down?
63d
2
I just got my diagnosis of ehlers danlos syndrome yesterday after 5 years of being passed around between doctors. any tips for moving forward with this?
108d
1
i find myself thinking a lot about how much easier my life would be with a mobility aid (besides the usual tape/braces), how did y'all know it was time for one?
127d
1
I finally have an appointment with a rheumatology consultant afterwaiting 5 years to be take seriously. hopefully I'll get the genetic testing I need for an EDS diagnosis. any tips on what to expect (uk)?
142d
0
I keep feeling like I’m going to fall asleep during the day to the point I can’t handle it anymore. It’s especially bad when I’m in the car, I can hardly keep my eyes open. (I don’t like to drive for long distances because of this) It’s almost like I’m awake but my body isn’t. Sometimes mom eyes are closed and I feel asleep but I hear the things around me- so I’m still conscious? What is this (is it normal?) and should I see a doctor of some sort?
164d
3
couple of questions : when my wounds are healing and begin to scab over they get really itchy, is this a symptom of slow healing in EDS? I get unexplained bruises that range from pale to quite dark and have very visible blood vessels, including capillaries, but so far only have a provisional diagnosis of hEDS, which this isn't a symptom of. is it possible I could have multiple types of EDS. (my doctor said its a good idea to be tested for all types of EDS just in case)
177d
3
Every time I eat I get severe nausea and some stomach pain. Am I alone here or is this something that happens with Eds? It almost feels like my food doesn’t settle and is trying to come back up.
494d
3
Has anyone found any useful treatments of any kind to help with peripheral neuropathy? I had an EMG that came back normal. They're still thinking it could be small fiber neuropathy. I have an MRI scheduled, and there'll be a biopsy sometime after that. But I am in constant pain, which spikes to severe with pretty much any movement. Full legs, buttocks. Feet have been spared so far. But it's been spreading and getting worse for the last year. Gabapentin and ibuprofen are useless. I react badly to most new meds I try. Nortriptyline, starting with a super low dose is next to try. I don't have high hopes.
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What is it?
Ehlers-Danlos Syndrome (EDS) is a group of rare genetic disorders characterized by defects in the connective tissue that supports the body's structures, including the skin, joints, blood vessels, and organs.
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