Hypermobility syndrome

ecoelle

Just to say that the doctor had heard of EDS, and was great, i have to wait for her to confer with a colleague who is more specialised but it looks as though it's trigger thumb, which looking at this link could be a sign of EDS.

http://www.reumatologia-dr-bravo.cl/whentosuspect/Whentosuspect.htm

I think this is one of the most useful links i have found in helping people to understand what EDS looks like in symptoms.

Might be of help to some of you in helping doctors or work to understand the syndrome.
x

iwannanicerlife

Thank you so much for that link ecoelle. Even though my daughter has had a diagnosis for a long time there was lots of interesting, additional info there

Olokia

Thanks for that link Ecoelle.

I learnt a lot from that link as well.

“The hand of the lax scribe sign”. These patients hold the pencil with marked flexion of the fingers or they used 4 fingers instead of the usual 3. They also frequently turn a little the page when writing.

Wow, I did not know that. My year 4 teacher was frustrated with me because I wouldn't hold the pencil properly. And I thought it was normal to turn the page a little....

You also helped me a lot. I think I may have Dysautonomia... As the link to that described me quite a lot.

Olokia

Argh! Why are doctors so useless!?!

I went on Monday to try to get my tiredness diagnosed. I had noticed on that link that Ecoelle gave the a major part of Dysautonomia was tiredness and I also had a lot of other things on there as well. The doctor told me to bring a copy of that in to have a look at.

I did today but I had a different doctor. She said, "Well I am not him" and didn't look at it. She completely ignored all the symptoms I had that were related to Dysautonomia and jumped on the tiredness part (Which I guess was the main reason for being there). She started talking rubbish about moods and they can cause tiredness and I know that isn't the reason for me.

She has booked me in for a blood test but I had this a couple of years ago and everything was negative. She ignored me when I said that a tilt table test would help diagnose if I have Dysautonomia or not especially as I get dizzy if I stand up too long.

No doctors will listen to me because they think they know best. Even when one of them had to google Ehler's Danlos Syndrome. I've had this fight before with the doctors when trying to diagnose EDS because they all kept telling me I definitely do not have it. (They found out that I do after I forced them to give me a specialist appointment). I really don't want this fight again.

The worst part? She said "Well if it is related to Ehler's Danlos then there is nothing we can do" Erm yes, diagnose me!

Sorry for the rant.

mazza111

Think we might, just might be close to a diagnosis of HMS for my DD.

A little bit of history. During childhood, we always seen her joints stick out at a weird angle, especially after diving, horse riding etc. They always managed to correct themselves before we got to the hospital. When she was about 8 or 9, she had a diving accident, and we think, dislocated both ankles, they went back in again. Doctor at hospital said wheelchair by 30. TBH I was so shocked I probably didn't ask the right questions and was more upset that the doc had said this in front of DD.



Anyhooooo

She's now 21, still has the same problems.

About May/June last year, she dislocated her right knee. It went back in, but was still at a slight strange angle, with a brace it seemed to correct itself.

Oct: Spiral fracture of the distal fibula, trying to run from some oinks with fireworks. She's still in a cast for this yet, 4 months down the line. One small bit just doesn't want to heal.


Today: She wakes up in agony with her left knee. Yep, it's dislocated while she was asleep Off to A&E who confirmed it. Wanted to give her another brace, but because she has the cast on the other foot, decided to heavily strap the dislocation. The doctor who examined her has asked that the next time she's at the fracture clinic that ALL her joints are examined as her knee is "wobbling like a jelly" <--- doctors words. And actually suggested HMS.


Now my question to all you fellow sufferers, is it normal to dislocate whilst being asleep? Have any of you had broken bones that take a long time to heal?

Any suggestions would be welcomed. I'm at my wits end here trying to help her. And think she's at her wits end being stuck in cast/braces/strapping.

Trialia

mazza111 wrote: »

Now my question to all you fellow sufferers, is it normal to dislocate whilst being asleep? Have any of you had broken bones that take a long time to heal?

Any suggestions would be welcomed. I'm at my wits end here trying to help her. And think she's at her wits end being stuck in cast/braces/strapping.

*sighs and nods* Yep. Oh, yes. That's business as usual for most of us! The number of times I've woken up with shoulder, hip, jaw or sacroiliac dislocations - or because of them - I've lost count, seriously.

My main suggestion would be to get her a memory foam mattress topper for her bed - I have one and it has been a brilliant help in reducing my knee dislocations and back pain while sleeping. If she has any trouble with her hips or lower back like this, I'd suggest sleeping on her front and putting a pillow under her pelvis - if you have memory foam with that, it'll stop her knees bending backwards too much as well, as it does for me.

For the other - yes, slow healing is also very common with EDS-3/HMSers. It's unpleasant, but far from unusual. My younger sister had hairline fractures to both her wrists at around that age, and they took quite a while to heal properly.

For what it's worth, I'm five years older than your daughter and have had problems for about the same length of time. I'm sorry to have to tell you, but you're both going to be dealing with casts, strapping and braces for a very long time - there's very little else that doctors can do for us, apart from painkillers and hydrotherapy, and the latter is only a way of slowing it all down. Best get used to it If she uses a computer a lot, I recommend using a dictation program on days when her hands and arms are especially painful - I find it's much easier than trying to type and keep joints in place at the same time (though it's not so good for web-page coding).

If she ever wants to chat to someone about it, or you do, feel free to hit me up by PM - I know it's not an easy thing to deal with at such an age, and I've found it's good to have someone to talk to about it. As I've said, I'm not much older. Good luck.

Anubis_2

One of my conditions is hypomobility syndrome (not hypermobility) and there is a difference between the two. I also have RLS as result of it which is quite severe and I have to take high doses of Robaxin.

It's important to know the difference between hypomobility and hypermobility, especially if the doctor just states the name.

mazza111

Thank you Trialia, a most illuminating post.

She has a memory foam mattress atm. Had this when the dislocation of the 2nd knee occurred. 3 weeks now she's had it.

Interesting what you said about the lower back. She has had rather a lot of lower back pain, but doc diagnosed Sciatica. I'm now wondering if it's connected to HMS.

We've got the fracture clinic tomorrow. I'm going in with her to speak to the doc. A&E should also have sent them a note round about how mobile her knee was when she got examined 2 weeks ago. Got an appointment for her GP on Thursday if we get no joy at fracture clinic and may ask for a referral to the Rheumatologist.

I will mention to her about the pillows. Things are a wee bit awkward for her sleeping at the moment due to having the cast on the other foot.

I just wanted to ask as I've never heard of a fracture taking so long to heal, apart from when surgery was involved.


I've tried to register for HMS forums, unfortunately I need to wait for an admin to activate my account, which hasn't happened as yet.


Thank you a million times over, it's great to know that there's someone there who has willingly offered her some support. I applaud you :T:T:T:T:T

Trialia

mazza111 wrote: »

She has a memory foam mattress atm. Had this when the dislocation of the 2nd knee occurred. 3 weeks now she's had it.

Thank you; and in that case, either a pillow under her knees if sleeping on her back or sleep on her front, would be what I'd suggest. Not on her side - the gravity will make the dislocations easier.

mazza111 wrote: »

Interesting what you said about the lower back. She has had rather a lot of lower back pain, but doc diagnosed Sciatica. I'm now wondering if it's connected to HMS.

Very likely, yes. It might even be that she has minor scoliosis - I have - two mild curvatures in my spine, one thoracic and one lumbar, and it's frequently missed in people with this condition, but often present. It wouldn't be anything to worry about in spite of the traditional image of scoliosis, if by her age it hasn't had more of an effect yet. It'll only be the back pain, from that, and heat helps, too.

I will mention to her about the pillows. Things are a wee bit awkward for her sleeping at the moment due to having the cast on the other foot.

I can imagine, yes. Good luck with the hospital - and the forums.

Thank you a million times over, it's great to know that there's someone there who has willingly offered her some support. I applaud you :T:T:T:T:T

Awww. *blush* Well, you're welcome. I always wish someone had been around to help me when I started getting really sick, so I do my best to help out other people in a similar position.

mazza111

Well, we got good news and bad news at the hospital.

Went to derma first. DD has to be admitted for skin treatment. BLAH!

Good news. She can start to wean herself off the Air Boot. So will be cast free pretty soon :j


Don't know how to take the docs opinion. Yes her joints are very mobile, that doesn't mean she has HMS *Head off Brick wall* Kind of expected it. Expected it more when I seen what doc she was seeing today. You know when you see them call other patients names and you hope they don't call yours :rotfl:

Guess we'll have to wait until she gets back out of hospital for her psoriasis treatment and see her GP about referral to Rheumy.