Even thought my GP had doubts about it helping, I went and saw a new physiotherapist the other day. My other physio, if you remember, set me adrift, slightly overwhelmed with how extensive my EDS is. She was nice about it, but it was a letting go and I was left floating along, not really sure where to turn.
The new physio, she’s had training in dealing with hypermobility. She knows what Ehlers Danlos is and while I don’t think she’s treated a case before, she knows how to.
My point is, she’s experienced.
Which incidentally, is exactly what I needed.
She pointed out that my proprioception is pretty awful [apparently I’ve got feet and if I don’t think about them, they bend really strangely without me noticing] and that I’ve learnt how to cheat in order to stand up without falling over [trick: constantly focus my eyes on only one thing].The proprioception thing explains why I can’t sleep in the dark and why trying to walk in the dark is like trying to walk across a pitching ship deck.
She had me stand on one foot and close my eyes. At which point I promptly fell over. It wasn’t a big deal, I was standing supported by bars at the time, so it was more of a wobble, eyes springing open and both feet on the ground than an actual fall.
I walk … strangely. Like a ballet dancer, all toes and along the outside of my feet. Funnily enough, I’d never noticed. See above re: proprioception.
I’ve been referred off to a podatrist in order to get orthotics fitted. She seems to think that straightening up my feet should help with my hip and knee problems. I agree. Which um, why did no one else think to mention that maybe my hip problems are caused by my feet?
I’ve been given two minor exercises to practise as often as I can. And before you start thinking that 2 isn’t much, by the time I’ve stood on each foot for 20 seconds and looked around [to try and help my proprioception, the looking is to stop me cheating], I’m exhausted. I have to sit down and recup.
Which you know, mostly sucks. But in the long run it will help, so I’m standing on one foot and looking around lots. I sort of look like a carnival clown.
I mentioned the children and she thought that physio for them was going to be the best thing I could do. She has a hypermobile son, so she understood where I was coming from when I spoke about how worried I am about Isaac [coming up in a later blog post: listen to me worry about my son. lots].
I left the appointment feeling supported. Like she knew exactly what she was doing and that everything she was doing was going to be in my best interests.
She understood me and where I was coming from.
It’s been a long time since a medical professional gave me that.
Glad you have finally found a good physio Veronica. I have hyperflexible knees and flat feet so wear orthotics to help correct that. (And unlike my other girlfriends my selection of hot shoes is seriously limited).
Can’t imagine how hard it must be for you to deal with EDS. You’re a brave mama.
Wow, finally, so glad to hear that someone understands where you are coming from. And often its not even that someone understands, it’s more that someone is really listening to you and trying to understand.
I hope that the 2 exercises that she has given you gradually get easier for you 🙂
Oh I’m so relieved for you honey! Finally someone who knows what the hell they’re doing. 🙂
I’m glad you found someone who understands and is experienced. I hope the exercies help.
Awesome that someone has finally given you some answers & hope. Good luck with the exercises.
It’s amazing how hard it is to find a professional who knows what they’re talking about. And it’s amazing how much better life can be when you find the right person.
I’m so glad for you that you’ve found someone that is great after just one visit!
Orthotics are wonderful – they fix problems in all sorts of places that you wouldn’t imagine floppy ankles affecting. You may have to mortgage the kids to pay for them though! I find I spend a fortune on shoes that are practical but rarely fashionable. And don’t get me started on summer footwear options …
Yay!
i was so thrilled to see this title pop up from you in my reader, even morme thrilled after reading the post. wonderful, wonderful news.
Finally, someone who sounds like they don’t have their head shoved up their ass.
May I gently suggest that you get a doctor’s note in case you are ever pulled over at a stop by an officer? I would hate for you to go through court system etc. because you wobble when you walk and some of those symptoms may appear to the untrained eye to be drugs/alcohol (walk in a straight line, etc.). Just a thought and many cyber (hugs).
You are such a lucky girl. I’m half-tempted to send LM (Love Muffin – I am not allowed to refer to her as SWMBO any longer) over there to meet with your new physio person. Because we’ve NEVER met with anyone who made that much sense of what is going on with her and what she can and should do about it.
Wow…I can almost feel the relief in your post. I know what it feels like to finally find a doctor that can help you.
Also…you’re kind of scaring the crap out of me! LOL. Sorry…I just clicked over to flickr because the picture you had in your sidebar caught my attention. I bend in pretty much all the same ways as you. So does my sister, and some of my cousins, my grandma did, etc. I’ve just been told my whole life that it’s “double jointed” and to consider myself lucky. I’ve never thought to ask a doctor about it though. The only time I notice joint pain is when I’m dehydrated…or on occasion, my hip seems to pop out of joint upon standing and that’s painful. It just happened yesterday…but is rare now. It was really bad when I was pregnant.
That’s enough blabbering for me! LOL
Thank goodness for that – about bloody time you saw someone who knew what they were up to. I’m really pleased for you – you need and deserve this break.
Good luck with the standing on one foot. It’s not as easy as it looks. I had to go to the physio for dodgy knees a while back and exactly the same thing happened – lift one foot, close eyes, fall over. I wasn’t standing in between bars so it wasn’t pretty!!
I have to go with badness jones on this one – YAY!
okay…this is too weird… you visited my blog and mentioned that you thought I was a Veronica…which I am. BUT….I also have Ehlers Danlos…how strange is that?
The rheumatologist here that diagnosed me has a special interest in the syndrome… and says it is not all that rare…but, to be diagnosed IS rare. Both my sisters and my brother and two nephews and a great nephew also have it as far as I am concerned…..one even has an elbow that pops out regularly…but, have not been diagnosed nor do their physicians care to discuss the issue.
My knees are pretty wobbly in the mobility department…and I sit with my feet turned in at the most precarious twisted angles… two years ago I broke my foot in 5 places doing some strange things while tiling a bathroom floor. Osteoporosis added to the mix isn’t helping.. and there are, of course, other “internal anomalies” as they refer to them….
my sports medicine doctor at the physio clinic says EDS patients are… “a surgeon’s nightmare and a physician’s goldmine”.
I really hope the physio works for you, and I’m so glad you’re being supported now
Wow!
That is great news to find someone who knows what the heck they’re talking about, knows what you’re going through but can offer you constructive help!
Finally you have got the response I was hoping for when I told what my friend the physio told me 😉 Keep plugging away at the exercises – and any others you get – because they will help, even if only in small ways. And as we know every little thing helps!
excellent. some good news.
What great news, a physio who knows what she’s doing. Had to laugh at “apparently I’ve got feet..”, and now I’m wondering about all of your younger years, if the problem might have been helped by wearing boots that supported your ankles and kept the feet straight. Of course with no-one knowing the problem then, such a solution wouldn’t have occured to anybody. So she’ll be recommending exercises for Amy and Isaac too? That’s wonderful. I’m really glad for you. Now stand on the other foot….look around….do things look different when you stand on different feet? Like your eyes are focused on a different starting point then you notice diferent details?
oh it must be so nice to finally find someone who know only ‘gets you’ but also has some ideas on ways to help! Yay for support!
so glad you found someone who knows what is going on.I was diagnosed with a nerve disorder called CMT 4 years ago, and have never met anyone who knows anything about it.
I walk funny too, and it makes it hard to get around – i am exhausted just walking a few blocks because all my muscles are working overtime to get me where i’m going.
apparently, i walk like a chimp – not from the hips like a bipedal human-type person, so like a chimp, i use too much energy while walking to make it worthwhile.
my friends all think that’s hilarious! who knew i was the missing link?!
Every doctor I talk to says that I have EDS but they will not actually dignose me. How did you get dignosed with EDS? I have extreme hypermobility and was in the Air Force and had a couple of ankle injuries that of course did not heal right and have caused more trouble than before. My father is a doctor but he hasn’t ever dealt with EDS. He has given me lots of information but no one near me knows anything about and doctors look at me like I am crazy and don’t understand the problems it has caused. How did you deal with? Any information would be helpful cause I am so sick of doctors acting like EDS is nothing serious because it can be painful to fall when not expecting to (even though it has lead to pretty funny stories).
fantastic news..
hugs..
finally a good physio
I am SO SO glad your words were HEARD. It makes all the difference, doesn’t it? Here’s hoping the exercises begin to work!!
I also walk on the outsides of my feet and the toes. Except that I’ve got an ankle brace on my left foot, and it’s making me walk “heel-toe” which really hurts.
Doctors told me that my balance issues were from low blood pressure, and it never occured to any of them that low blood pressure doesn’t get lower when a person closes their eyes…
I’m glad you’ve found a good PT, and I hope you show some positve results.
I know I haven’t been around and I missed this post!! Hooray for mini exercises. On testing daughter’s proprioception the physio asked her to close her eyes and walk to the end of the physio gym imagining she was walking in a straight line. We followed her with her eyes shut walk a wobbly line and straight out of the doors and I promise she was not peeking. Physio said it was the worst and classic case of poor prociepecetion (sp) he had ever seen. (Just a word of caution do not attempt to do this alone). If 20 seconds is too long I would suggest 10 seconds!
Comments on this entry are closed.