Yesterday afternoon my daughter rang me, Veronica had dislocated the bone behind her knee and it was refusing to go back in. I was full of useless advice and it was a horrible but brief conversation. Veronica was in a lot of pain and I was unable to help her. There was one small consolation though and that was that Veronica was trapped on her chair in front of her computer.
I suppose if you are going to be in excruciating pain with a bone poking out the side of your leg and unable to move, there are worse places to be than at your desk in front of your computer. I told Vonnie to keep me up to date via twitter.
Here are some of our tweets over a three hour dislocation.
@SleeplessNights will straightening your leg out make it pop back in?
@frogpondsrock Nope, will tear the tendons.
@SleeplessNights Bloody thing! While you are stuck there you could look up quince recipes for me.
@frogpondsrock lmao – I think not.
Relocated. Excruciating.
It wants to pop out again.
All the painkillers in the house wasn’t (isn’t) enough to deal with that. #ehlersdanlos
@SleeplessNights now strap the fucking thing
@SleeplessNights not that strapping it will help but it will make me feel better.
@frogpondsrock It’s braced with tube bandage, lots of it. Best stuff.
@SleeplessNights Good. Now please be careful, I still feel a bit sick for you.xox.
@frogpondsrock I am being very careful. Can’t bend the leg at all. Funny – I didn’t do anything to dislocate it, just bent the knee.
It is that last line written by Veronica that sums up all my fears and frustrations with Ehlers Danlos Syndrome. The fact that you don’t have to do anything at all to suddenly have a dislocation and be faced with excruciating pain is frustrating and terrifying at the same time.
My husband, son and daughter all have Ehlers Danlos but with varying degrees of symptoms.The Spouse has only started to dislocate in the last few years and it is apparently quite common that dislocations will only start to present in middle age. David is in the middle of puberty and isn’t as bendy as his sister but to date he has dislocated his shoulder, elbow, fingers and his ankle subluxes. He can make a horrible clicky popping sound with his jaw and I worry that he will do it one time too many and bam out goes his jaw.
They all share the same symptoms of nausea, headaches, insomnia, low blood pressure, dizziness, achey joints, pain, stretchy fragile skin that tears easily, slow healing and they are also prone to infection. The Spouse and Veronica also have Livedo reticularis and Veronica and David have stretchmarks in strange places. They all have allergies, excema and asthma, poor circulation, weak eye muscles with a slight blue tinge to the whites of their eyes and I would trade them all in on new models if I didn’t love them quite so much.
Doctors in Tasmania know very little about Ehlers Danlos Syndrome and so it is very under diagnosed. Medical students only ever see the very extreme cases in medical text books and Doctors often fail to connect the dots. EDS has a lot of similarities with Lupus and EDS is commonly misdiagnosed as Chronic Fatigue Syndrome or Fibromyalgia.
The Spouse has two sisters who are suitably sympathetic towards our diagnosis of EDS but completely refuse to believe that their children could have EDS. *sigh* It is glaringly obvious to me that some of my nieces and nephews are definitely very EDSy and as much as I worry about them, I have to conserve my energy for my own children and grand children.
There are some very good bendy bloggers out there and I would recommend that you click over to Bendy Girl at Benefit Scrounging Scum or Achelois at The Tensile Times as well as my daughter Veronica at sleepless nights.
If you have any questions about EDS or if you think you have EDS leave a comment and I will get back to you and help you as much as I can.
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I saw a tweet that Veronica was having pain but didn’t realize it was that bad. I’m so sorry. I know how hard it is to both be in pain and watch helplessly as someone you love is in pain. Wish there was something I could do beyond send lots of xoxoxo.
This is weird. I have EDS but have the same scenarios as you with my daughter with EDS. Knowing how you both feel is a bit surreal. xoxo
Sending good bendy leg thoughts and prayers your way!
I had never heard of EDS, but looked it up after seeing Veronica’s tweets, I’ll be sending lots of psoitive thoughts her way.
Poor Veronica. At least the knee eventually went back in. I don’t see how it would stop her looking up quince recipes though. Ha Ha.
Maybe she thought you’d find them yourself and be better able to choose the ones you want……
I scanned a patient with EDS just a few weeks ago for some vascular issues. It seems to be a really rotten disorder. Stabilising thoughts to Veronica’s overly flexible joints. X
And now I know only too well that helpless feeling! My 6 ft Meccano Man is struggling mightily to pretend all is well when it’s patently obvious that it isn’t.
Hope Veronica’s knee behaves itself for a while now, ditto the rest of her wonky joints 😉
I’ve missed those tweets. Poor Vonnie. Sending loads of healthy vibes to her.xoxoxo
I haven’t commented for a while but now must .. and send my thoughts and well wishes to you all. I cannot imagine the pain and frustration – what can I say but wish you all well and send hugs
Interesting previous post .. very interesting! Well done for standing tall! Donating your art is a good idea .. do it !
I didn’t realise it was that bone when we were tweeting, I thought it was the kneecap for some reason, having done the same thing myself, it’s all kinds of worse ouchies than the kneecap. I usually put mine back by holding the knee joint/area of dislocation with my hands and gently mobilising the leg back and forwards. My tendons are probably all shredded though!
I’m just starting on a new physio programme which is incredibly promising. It’ll take me a while to start blogging about it but I’m hoping to describe the exercises so that others can follow the programme too. Fingers crossed for us all! Lots of love to you all, BG Xx
My bendy boy doesn’t have EDS but he’s ultra flexible (as that photo I sent you shows!) with probably Hypermobility Syndrome and gets the aching joints and quickly tires when playing sports.
(((hugs))) to you and Veronica both, it must be so difficult, frustrating and frightening with this condition.
Sigh. From what I understand, I simply can’t imagine how frustrating life can be at times-for you, not being able to help your daughter. And, for your daughter with the agonizing pain she experiences. What sucks most of all is the fact there is little you can do. I’m sending lots of love and gentle hugs your way.
I’m an EDSer, too. Right now I’m sitting in my computer desk chair after subluxating my left ankle. Fortunately I’m not at the point where I have full dislocations yet – well except one bone in my foot (both left and right) that dislocates a lot. My ankle is back in now but it still hurts like heck. I’m sorry to hear that Veronica is in such pain. I hope her pain levels decrease soon. I’m behind on reading her blogs, I need to catch up. It’s a small world, isn’t it? 🙂
Oh goodness. It must be so hard for all of you. I don’t know what to say, other than that I am thinking of you and really wish I could be a bit more constructive.
I hadn’t heard of EDS before reading yours and Veronica’s blogs – is it any consolation that at least more people know about it now?
Terrific work! This is the type of information that should be shared around the web. Shame on the search engines for not positioning this post higher!
my name is debbie I’m from tasmania I have ehlers dasn l o s ave never meet anyone in tassie with it . Doctors know very little. I wish I had someone to talk to. No one else in my whole family has it. Wish the was someone in tassie to chat to.. I don’t seem to have problems with dislocation s at all yet I’m 43 .