Diagnosing Ehlers-Danlos Syndrome: GP Recognition

[kittykat77]

I have finally seen a GP who recognised my symptoms of EDS. Actually Professor Black noted - hypermobility of joints. That's the main way of diagnosing it - I used to be double jointed in nearly every joint. Now I am nearly 50 arthritis has reduced the number of tricks I can do. It is a lack of collagen - inherited. And sadly causes placental insufficiency (one daughter who had marked infarction of placenta then two stillbirths).The blurb says that it can cause cramp and fasciculations - and fibromyalgia, and arthralgia, and asthma .... oh and irritable bowel. Just wondering if someone else has this too and if there is a relationship.I am not bothered by fasciculations - I have attenuated to their existence. It is the SEVERELY painful clonic cramps of the entire leg. Yesterday 3 times while trying to swim. Thankfully in a shallow pool. Really didn't know if I could drive home.Oddly enough the DVLA did revoke my license but the neurologist talked them around to letting me have a full license. hmmmget in touch any EDS out there

 

[paucek.sheldon1]

I used to have really, really bad cramps. Especially when first getting up from somewhere, or if I stretched.After a while I learned to 'feel' when they were starting and if I immediately stopped moving, usually the cramp would not start. It would go away.This lasted for about a year or two or so, but then went away from me.I still have 'cramps', but nothing that is easily ignored. At any rate, not the severse cramps I used to have

 

[christinasgirl123]

I have EDS (or hypermobility syndrome, 8/9 brighton score ), and I unfortunately share the story of your daughter. I have IBS since..ever. I cant't remember not having it, started as a kid.I know that I have it as you could tell very early that there must be something very wrong with my joints. Till today, I only made fun of it. I went to a yoga class with my sister and made the teacher look , as I bent my body likeI was made of rubber,Today, I supper from BFS and jolt pain. I never read that it may cause fasciculation and cramping, and am kind of stunned now. I always cramped easily. I have 10 out of 18 tender points for fibromyalgia. Maybe in my case, the hypermobility is one brickstone for my BFS. Or other way round. Actually I'm just happy it is nothing serious. And for all 3 of them (BFS, Hypermobility and fibromyalgia) it's just a fact that you have to live with it. Hypermobility is fun as long as you're young, but when you get older-----it hurts.