EDS Hypermobility No. 2

[SparkleRainbow]

We reached 1001 threads, so here we go with a new thread. This thread was originally started so we could get together and share experiences and expertise in Ehlers Danlos Syndrome, Marfans, Benign Joint Hypermobility, and any other medical conditions including connective tissue disorders which cause joint hypermobility, pain and all the associated symptoms.

Bath has a specialist rheumatology hospital, so that's maybe another option for you?

Don't know what they're like, but they're sorting out an appointment for DD1 (her GP referred her to the adolescent clinic, but the appointments people were a bit as she's 18 already, so they need to speak to the consultants/GP and decide which clinic to send her to. I'll do a review of there as well as DD1 wants me to go along and hold her hand.

That is interesting ....Bath, will go and have a little google around then, just to see who is there and what they say they can do!

here Sparkle

Sparkle, you were not a million miles away from us then. Same PCT, so you never know.

I've done a bit of googling and there's not even a Paed Rheumy listed for Heart of England PCT.

My Mum is considering going privately to Prof Grahame, as reading one of his articles she felt as if practically her whole life's worth of medical mysteries had been answered. Unfortunately my SDad isn't being very supportive and she won't do it without him being on board. She has a long history of joint problems, new hip and knee that haven't been very successful due to poor soft tissue healing, needs the other hip and knee done, but can't go through it all again. Her consultant said he suspected fibromyalgia, as in a long career of ortho surgery he had never seen soft tissue react so strangely to surgery and didn't know what else to suggest. She has osteoarthritis in hips, knees, hands and wrists with signs of it also developing in her feet, neck and shoulders. She was in traction for a year as a child due to problems with her left leg and then had another year in a full-leg caliper. She is now in constant/chronic pain pretty much all over her body and having had two joint replacements and an ortho op on her foot, she is still in terrible pain, but now it's soft tissue, as opposed to the joints/bones. She's at a really low point at the moment, really restricted mobility and too scared to go to the doctors for fear of not being taken seriously.

I hope she does go, for her own sake, but also as it might make sure that things are followed through properly with ds2. It would be covered by her insurance until early next year when SDad retires.

moosemama, my mum is waiting for double knee replacement surgery and is only 58. She has to wear special shoes because of the pain in her feet and the fat pads have gone. She recently had surgery for a bowel and bladder prolapse. I've suggested that she may be hypermobile (was bendy as a child and very clumsy). If she has the surgery and she is hypermobile could it make things worse?

At which stage do you request further testing? My DS 5 and dd13 have hypermobile joints. My sister does, my neice 14 and I suspect my other sister may well be (had major surgery at 15 to turn legs out as they had rotated too far in and also had to wear double nappies as a baby due to dodgy hips). My DS also has the blue sclera and my nan had skin that felt like peach skin!

My DS hypermobility in his hands is so extreme in his hands that he is struggling to learn to write and if he uses the tripod grip it pops his thumb in and out (the OT said) he's seeing the orthopaedic OT next week to see what they suggest as the OT we saw was unsure what to do! My dd13 is not as extreme as my DS but she gets pain where as he doesn't. The physio has identified it in her ankles and knees and she has sever flat feet with pronated ankles but I'm really worried about her spine as she is developing a boney hump at the base of her neck. I'm going to request a private referral for them both but not sure where to. We live next to Sheffield.

Thanks for reading

I'm not really sure to be honest sazale. We seem to have the very soft skin, although not excessively stretchy and historically none of us have responded well to local anaesthetic or healed well after surgery. Not sure if it's the same for everyone though.

Mum says that obviously the bone/joint pain is gone, but she is left with chronic soft tissue pain that just won't seem to go. She had her knee done early 2009, her hip early 2010 and a claw toe fixed in Feb this year. The hip has been the best out of the three, but she still has soft-tissue pain from that.

I just went along to see what they would say about ds2 in the first instance. Then when we started reviewing the family history we realised there could well be more to it and I contacted his paed to ask if they wanted more background and historical info. I am hoping the next stage would be to be referred on, but who knows. I guess it depends who you see first, how much they know and how keen they are to refer on.

Moose - why should your mum have to go private? Get her Gp to refer her down to University College Hospital London, straight to the hypermobility clinic, they can do that now through choose and book service, I read it yesterday on the UCHL website. She will definietly be seen as she would be a new dx.

Sazale - my somewhat befuddled brain tells me that there is a specialist hypermobility clinic in Sheffield, which is NHS. You don't need to go private, you just need a referral from your gp. I have a good friend who is an OT, and she always says she has nothing to offer ds, and no experience of OT, in her opinion OTs should not be dx, but supporting patients pre and post dx. You need either a rheumatologist or a paediatrician, possibly via a geneticist.

Off to the hospital with ds this afternoon to see the rheumatologist.....not looking forward to it at all.

Midnight - RNHRD looks fab, I do hope they are as good as their website.

She won't go to her GP Sparkle, after years of being told she is a malingerer and fobbed off she won't even go when she is really acutely ill. I've told her to change to my practice but she won't do that either.

I read on one of the sites that Sheffield only take complex and crossover patients. So the ones that are hard to diagnose because it's not clear which type of EDS they have. Unless that's a specialist clinic within their main hypermobility clinic.

Good luck with the rheumatologist this afternoon, hope it's better than you are expecting.

Thanks guys I'll look into it. The more I read, the more I'm gob smacked by it all!

Moose, my mum's like that. She went to her GP for years constantly being fobbed off because she's overweight (but eats really healthy). She moved house, changed GP and they picked up under active thyroid straight away and said that her prolapse were because of low collagen levels.

Very similar here sazale.

Mum has hypothyroidism and of course very limited mobility, so consequently is overweight. Of course the GP keeps telling her she needs to lose weight, but not offering her any help or support to do so.

Moose it could stillbe Gosh as they take regerals from all over the country rehab course included people from Birmingham , Manchester ,Wales

Sheffield is more of a dx centre it's where Proffesor Pope is based .

I'm tired of fighting and chasing people ATM . Will see GOSH on 12 th June not sure who am hoping this time we will get the consultant .

But right now wish there leave us alone to just get on with things our way

Thanks THC.

You must be so sick of medical 'professionals'. I totally understand why you just want to be left alone. I was the same after all my MS tests at Christmas.

Quick question. I know all younger children are pretty bendy - but can all three year olds bend their knees backwards? Ds2 pointed out to me yesterday that dd was standing there with her knees bent significantly backwards and since then I've noticed she locks them back every time she stands still for anything more than a couple of seconds. It's actually pretty pronounced, can't believe I hadn't noticed it before. Of course I'd noticed she's very flexible and her hands are really bendy, but just thought it was because she's still so young.

Moose - I don't think that is entirely normal no. A certain degree of flexibility is in all children, but if it is that pronounced without anyone manipulating her knees then I would suggested hypermobility. Sorry.

The consult was all right. Ds and I handled him quite well. I presented him with different theories and he agreed with all of them!!!! Wow a major break through. He has admitted ds is subluxing under normal conditions, and subluxing more when pain is greater. He properly explained why confusion over the incontinence, and but admitted that is was a sign of spinal pressure in ds. He concurred with Paed that admitted ds that NO2 helped relax his muscles and this was a useful bit of info to have in the arsenal. He discussed how improved ds' muslces are in his neck and explained how this will continue to help and we discussed the pros and cons of a pain clinic. Couldn't have had a more positive outcome. Plus ds talked to him and explained his pain properly which meant rheumie was able to properly dx sublux damage in his ankle. The basic message is still the same, as much physio as poss, as much activity as poss, long term pain killer use, but now add NO2 to pain meds (although can not be used in the community, only given by medics, but even so) Ds came out and gave me a thumbs up, and said the best appt we have ever had with him. Don't think we can hope for more.

I was afraid of that. Looks like we have another one to add to our list then. Ds1 showed me last night that he can bend his knees backwards, but it's nowhere near as pronounced as with the other two and dd's are definitely the most pronounced of the three.

Glad the consult went OK. Is he going to refer to pain clinic then?

Glad DS's appointment was positive sparkle.

moosemama it might not be as bad as you think. All my DS's are hypermobile and you wouldn't notice DS1 has it. We only know because the neurologist was wondering if he was as me, DH and DS2 were.

I got a phone call today from wheelchair services today. The lady wanted to know why we hadn't been to DS2's appointment. It was today but we hadn't been told. I was going to phone up earlier in the week to ask how much longer we will have to wait but I didn't get round to it. Really wish I'd phoned now. We have to wait about another month for another appointment, grr.

Thanks ellie, that's reassuring.

So for you about the wheelchair appointment. That used to happen to us all the time with ds2's eye clinic appointments. The letter would arrive, almost without fail, the day after the appointment should have taken place.

HI ALL Not been on but have been following ! Nothing to say but sending you all for your probs...We are awaiting O/T "advisment appointment" on Wed 16 may..so might have some more news then....

Cant we invent a HUG sign ...thats what i meant..!!!!

I only have ((((hug)))) to offer!

Ellie - that is soooo blinking frustrating!

Moosemama - Ellie is right, it doesn't mean she will have pain or pronounced problems. Fingers crossed for her

Can I just say though to you all, THE WEEKEND! Have a with me. xxx

I will have a glass with you Sparkle, thank you.

I don't usually, but having already eaten my own body weight in chocolate comfort food this week my diet is already blown.

I'm joining you with the . Thanks for understanding. My dad had the misfortune to be on the end of the phone just after I found out and he didn't really get it.

DS3 had his physio appointment this week and he is doing well. The physio wants him to wear piedro boots but his feet are so tiny they don't make them in his size.