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EDS Hypermobility 3

825 replies

elliejjtiny · 11/06/2012 23:12

Not sure how to start this off so I'll just copy and paste sparkle's opening post from the last thread and hope I've spelt hypermobility right in my thread title Grin.

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.

OP posts:
TheHumancatapult · 30/08/2012 17:57

Dyspraxia and pots no not eligible there's several categories of levels and tbh I don't even think Eds is eligible as physical stuff is based on limb or body movement eg spine injury level or amputee and where

Or brain injury , or Ld

elliejjtiny · 30/08/2012 19:01

I found this on the paralympic website:

The Paralympic Movement offers sport opportunities for athletes that have a primary impairment that belongs to one of the following 10 ?eligible? impairment types:

? Impaired muscle power

Impairments in this category have in common that there is reduced force generated by the contraction of a muscle or muscle groups (e.g. muscles of one limb, one side of the body, the lower half of the body). Examples of condtions included in this category are para and quadriplegia, muscular dystrophy, post poliomyelitis, spina bifida.

? Impaired passive range of movement

Range of movement in one or more joint is reduced in systematical way. Note that hypermobility of joints, joint instability (e.g. shoulder dislocation), and acute conditions of reduced range of movement (e.g. arthritis types of impairment) typically will be excluded as ?eligible impairment?.

? Limb deficiency

There is a total or partial absence of the bones or joints as a consequence of trauma (e.g. traumatic amputation), illness (e.g. bone cancer) or congenital limb deficiency (e.g. dysmelia)

? Leg length difference

Due to congenital deficiency or trauma, bone shortening occurs in one leg.

? Short stature

Standing height is reduced due to aberrant dimensions of bones of upper and lower limbs or trunk (e.g. achondoplasia)

? Hypertonia

A condition marked by an abnormal increase in muscle tension and a reduced ability of a muscle to stretch. Hypertonia may result from injury, disease, or conditions that involve damage to the central nervous system. When the injury occurs in children under the age of 2, the term cerebral palsy is often used, but it also can be due to brain injury (e.g. stroke, trauma) or multiple sclerosis.

? Ataxia

Ataxia is a neurological sign and symptom that consists of a lack of co-ordination of muscle movements. When the injury occurs in children under the age of 2, the term cerebral palsy is often used, but it also can be due to brain injury (e.g. stroke, trauma) or multiple sclerosis.

? Athetosis

Athetosis can vary from mild to severe motor dysfunction. It is generally characterized by unbalanced, involuntary movements of muscle tone and a difficulty maintaining a symmetrical posture. When the injury occurs in children under the age of 2, the term cerebral palsy is often used, but it also can be due to brain injury (e.g. stroke, trauma).

? Vision impairment

Vision is impacted by either an impairment of the eye structure, optical nerves or optical pathways, or visual cortex of the central brain.

? Intellectual Impairment

The Paralympic Movement identifies intellectual impairment as ?a disability characterized by significant limitation both in intellectual functioning and in adaptive behavior as expressed in conceptual, social and practical adaptive skills. This disability originates before the age of 18? (American Association on Intellectual and Development Disability, 2010). The diagnostics of intellectual functioning and adaptive behavior must be made using internationally recognized and professionally administered measures as recognized by INAS (International Federation for sport for para-athletes with an intellectual disability).

It says that hypermobility isn't included in one of them. Maybe the ataxia category would work for the dyspraxia.

OP posts:
TheHumancatapult · 31/08/2012 09:06

yup i suspect it would not even cover ataxia as thats seen as something that can detoratiate often has a brain cause

even with musce hyptonia ds be ruled out as they can not pinpoint the cuase

and though short stature yet again as far as we know it is not one of the recognised condtions for being hort stature he is just short reason unknown

TheHumancatapult · 31/08/2012 09:07

good job he does not want to be paraoumpic then

sparkle

did you get hold of EDs from when poke yesterdya they are hoping paperwork but have list of rooms and people attending

SparkleRainbow · 03/09/2012 14:48

THC - just spoke to Lara Bloom, the conference info is going out today or tomorrow apparently. Totally unreasonably excited to be seeing you. Shall raise the question about fudgy dx and certain drs not recognising established links with eds, like pots and ibs, and how parents are supposed to navigate such a system. Got lots of questions about ds, neck and feet in particular....not sure will get a chance to ask anyone but will try.

auntevil · 03/09/2012 15:05

Even more unreasonable to be excited that you're both meeting - and are going to bring back tons of info for the rest of us Grin
Particularly interested in establishing links - and why there seems to be no clear advice

TheHumancatapult · 03/09/2012 15:09

Yeah other day she said 5 on Friday check in but hotel told me can get in room from 5pm so give me chance check in and have a rest

Can't wait to meet you been a long time coming Grin

SparkleRainbow · 03/09/2012 18:31

THC - Is you mum taking care of the kids?

Aunt - you will be with us in spirit!

TheHumancatapult · 03/09/2012 21:02

Sparkle yep and my older two will help . I'm even going to enjoy the train journey in peace with no mummmmm . It has been a long 6 weeks think I had maybe hour or do to myself in total >

Not taking dc as ds3 needs 1-1 due to other needs which would defeat object of me being able to listen

TheHumancatapult · 03/09/2012 21:04

I'm worried as think he has gastro issues we know he struggles weight wise and eating is hard work due to eds and the verbal /oral dyspraxia .

But the delayed emptying has come up feeling we may be heading for some tests

auntevil · 04/09/2012 17:29

Interesting about delayed emptying. DS2 has incomplete emptying, and very little muscle control as to when. He's due to go for anorectal bio feedback in November (I think- or September, I lose the plot a bit with the 3 of them all having appts . I know the dates, just forget who has what with who. ) He eats like a horse though, but is underweight for height and always has been. He's a boney boy.
Are you going to be asking questions about the links?
In fact I'd be interested in the connections with 'food processing' from top (swallowing/chewing) to bottom (enough said Grin )

TheHumancatapult · 04/09/2012 19:11

Aunt ds2 has similar issues

SparkleRainbow · 05/09/2012 17:59

Weight gain is definitely an issue for my ds too, he eats quite well, but sometimes pain levels do rather confuse matters and make it difficult to unpick exactly what is happening....

I am not taking dc either....actually want to be able to talk uninhibited by dc, particularly ds listening to critical issues around his care.

Grin about Dr N feeling nervous when you think about it....most drs put that kind of pressure on us at every appt.

Nothing in post today...hopefully timetable will come tomorrow and then we can sort out how I can find you on Sunday....your self description not withstanding Wink I shall be the once now ex blonde, with the stiff neck (damn subluxing vertebrae) scanning the place for a red head in a wheelchair.

TheHumancatapult · 05/09/2012 20:03

Mine arrived today ) will post details about Sunday in the morning

Yup ds2 eats like mad can't put in weight has ibs

Ds3 not q lot as never really hungry constipation issues but the physical chewing act hard so I gave the two extremes

roundabout1 · 06/09/2012 10:24

Hi everyone - a newbie here sparkle told me all about you guys on here. A short history I have a dd2 (2) who for the last 6 months has been experiencing pain in her legs & feet always at night but sometimes clutches her knuckles on both hands in the day time. She's a poor sleeper anyway but since the cramp we have had nights & evenings of little sleep on average 2/3 times a week. We saw a Paed last week who diagnosed it as growing pains but she is hypermobile particularly in her wrists , she can bend them all the way so her fingers are touching her wrists. I didn't know anything about this. The growing pains diagnosis was reached after doing blood tests but was based on the fact that she likes her feet to be held tight when they are hurting or her calfs rubbed if its her legs. Sometimes it looks like proper cramps when you can feel sort of knotted muscle in her calf ^ other times her toes split apart when they are hurting. That was more in the beginning, now it is just pain. Maybe unrelated but when she was 6-9 months she used to scream & go into a spasm with her hips & legs, we saw orthopaedics & they just said she would grow out of it & her hips were a bit delayed in forming. Sorry thats an awful description of what he said but I can't think how to describe it, lack of sleep has led to brain fog today! Indeed that did stop by about 10-11 months old. I have had knee problems since a teen & now have bursistis in one hip too, but wasn't awre of any hypermobility although have found I am on my knees. Will read up on some of the posts later - am off to change a stinky nappy!

SparkleRainbow · 06/09/2012 13:15

THC - my conference details came today....tells me everything expect where it is! The website says Burleigh Court conference Centre 7, is this where you are heading? I will aim to get there for 9 on Sunday morning, so I have time to find you before the first speaker at 9.45, then I can sit with you!

roundabout1 - welcome, I am so glad you came across. Others will be around later I am sure, but just a little back story for you, but don't be alarmed by anybody's back story as hypermobility can be so varied. I was dx with benign joint hypermobility by a rheumatologist when I was 18, after years of dislocating and subluxing joints and having pain most of my early life. I significantly worsened over the next few years, and when I was early 20's my dx was changed to Ehlers Danlos Syndrome Hypermobile type. I had had years on NSAIDs by this point and collapsed with an anaphylatic reaction to NSAIDs. I have wide ranging hypermobility, but in some joints it is not as extreme as others have, for instance I can not bend my thumb back to my wrist. I have a hypermobile spine, and have lost a disc as a result, my hips and knees are severely affected, my shoulders increasingly so. I have significant degeneration of the joints in the sternum causing severe chest pain. I also have inflammation affecting the collagen around my heart and lungs. I have no affects in my digestive system, but I do have a mild mitral value prolapse (a leaky heart valve) neurally mediated hypotension (fast heart rate, low blood pressure) migraines. I live a normal life and have carried three dc to nearly full term. Of my 3 dc, only my eldest ds appears to be affected. It was clear to me when birth that he had eds, he was actually dx by Professor Grahame (the most eminent specialist in this country) when he was about 20 months. He is more severely affected than me, although the hypermobility dx scale often used (Brighton scale, or Beighton Scale) gives him a fairly low score, as it does not measure his most hypermobile joints. He frequently dislocates and subluxes the following joints, cervical spine, shoulders, hips, knees, ankles, toes. He is mildly affected with food intolerances, he has neurally mediated hypotension. He spends most of his days in pain, and takes regular pain medication. He does physio daily which has really helped. His proprioception is very poor, gross motor skills are poor, but apart from handwriting which is dreadful, his fine motor skills are good. He is regularly hospitalised as the nature of his cervical instability is life threatening. The veins and arteries in his feet regularly collapse along with the bones and joints, which causes severe pain, but no dr can currently tell me why.
He used to get the cramps exactly as you described, and his joint pain could easily be described as "growing pains". My ds is quite severely affected, most children and adults with hypermobility are not severely affected, and make great ballet dancers, high hurdlers, pole vaulters etc.

The mums on here have great experiences to share, have navigated the often rubbish medical profession who unfortunately often know significantly less than we do (and I am not being arrogant there...it really is true isn't it ladies)I learn something new every day about eds and hypermobility, which are now considered to be the same thing thanks to the wonderful people on here.

TheHumancatapult · 06/09/2012 14:07

lol Im not even sure where in the centre confenece is but will if can get a signal tomorrow post on here

Ho roundabout

I have 4 dc with eds ds1 e temred dyspraxic but no other issues.Ds endy but has the gastro side but otherwise ok
dd copes pretty well .All of them have problems with handwriting and even dd is now moving to laptop in school

then have ds3 who is more seriously affected but has a rarer form and has suspected chromome issues.
sadly for ages was told he was lazy then delayed and then a bit bendy but as gpt older far from it and now the proffesionals are waking up to it

TheHumancatapult · 06/09/2012 14:07

there hi not Ho blush

TheHumancatapult · 06/09/2012 14:08

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Message withdrawn at poster's request.

SparkleRainbow · 06/09/2012 14:21

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roundabout1 · 06/09/2012 15:10

Thanks for the welcome, I'll have a look through those links later. Everything seems such a minefield doesn't it. I spent months trawling the internet earlier this year as dd1 (6) had possible glandular fever although never tested positive & now is diagnosed with post viral syndrome. And I myself have a balance/vestibular problem. Never mind at least all this research would turn us into fab doctors!

TheHumancatapult · 06/09/2012 15:14

Argh that should been as a pm !!

auntevil · 06/09/2012 17:44

Grin at 'Ho' THC - nice to see you down with the kidz Grin

Welcome roundabout
I'm still searching for someone to take up our hypermobility issues Sad . I have 3 DS - all hypermobile, like me (DH can be blamed for everything else)
DS1, hypermobile, dyspraxic, SPD, IBS (makes him sound really brainy with all those letters after his name). He keep falling and his ankles are so weak, but I think with the dx of dyspraxia, they just wave it away.
DS2 is the physically sporty type of hypermobile. He has IBS and severe bowel problems.
DS3 has been referred to see OT for fine motor issues, but thankfully doesn't have his brothers knack of ankles going. He has IBS and swallowing, bowel issues.
Sparkle is right when she says that there is some serious knowledge on here. I have found out sooooo much.

bizzey · 06/09/2012 20:53

HELLO ALL....sorry went a bit AWOL during the holidays ....where did they go !? We have had busy summer and I have not caught up with everyones posts yet but hoping everthing is alright/ok or bearable!

I wanted to come on tonight as I knew THC and sparkle were going to the conference this weekend and wanted to wish you both a "good" time if that sounds right .

Cant wait for your updates !!!...and I dont mean the standard of the wine !!GrinGrin

We went to Spain for holiday and ds3(dx) had a fab time in the pool ......with a ring ..armbands and goggles ! but it meant he could keep up and play with his big brothers in the deep end ....he just kicked and floated ...unable to drown !!! and gave him a real confidence boost .

He LOOOOVED the jacuzi though the best ...the bubble pool !!

Conected or not connected I dont know.....but he did not tan ?

All boys were covered in fac 30 and after 2/3 days ds1&2 had short marks (and little white bums !!) but ds3 did not have any "join" where his shorts were on his waist.

Remember now he is a skinny boney underweight one lacking in Vit D...???

By the time we got home he looked more yellowy/dirty than "brown"..??

Legs are still hurting..and he thinks he can swim ! But he has gained confidence in the water ...with his aides !!

I have Genetics next week and comm pead the week after.

ROUNDABOUT ...Welcome I will update my story later ...sorry... ds1 started secondary school on Tues and is calling me about something ...we are both shattered ..the novelty of new school is wearing off !!

Got to go ...take care everyone !