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.

sparkle the colour in his feet yes could indicate raynaurds

sparkle downside to the off th emill ones they are not cast mind orthitcs would offer you the pre moulded ones first to

But dont be too dispointed if they dont help .DS first of the one from orthtics ended up ripping his feet to shreds

sparkle lol that could been written by Sue mallard pmsl

ellie yes it can affect some mor emildly than others also as get older you cna stiffen up

me im hypermibile dx of EDs 3 had dislocation scored 7/9 in scale obviusly now my spinal injury means if tested would not score

dd has dx of Eds 6/9 is flexiable and except for problems handwriting is fine
ds1 not dx but yeah he score around 6 to
ds2 ds of type 3 very flexiable but no pain or dislocations but has serious gut problems

ds 3 has dx of EDS type 6 9/9 on beighton scale but if affected everywhere every joint , but they do wonder if theres something else in fact they are certain just can not find

Hi, I had started a thread on hypermobility but didn't get any replies. I've just found out that both my son and I are very hypermobile, what problems (and benefits if any?) could this bring for us?

Hello

Just spotted this thread and hope it's OK to join in? DS (6) has recently been diagnosed with hypermobility in all of his joints (9/9), low muscle tone and dyspraxia. He has shoulder and pelvic instability but he's having daily physio so we're hopeful things will improve as time goes on.

I'm rather new to all of this but hopefully at some stage I'll be able to offer advice to others in the same boat, rather than asking all the questions!

hi join in and ask away

Ihatecbeebies sorry i tend not to look on sn boards any more but in what way do you mena problems

I ahve 4 dc with hypermoblity and for a couple of them it brings no problems just a bit more bendy ( party trick style)

Ok I'll get stuck in and a question! DS has long-term issues with GERD, needing a Nissen's Fundoplication operation when he was 2. Unfortunately whilst the op reduced his symptoms, he still needs to take Lansoprazole daily, although at least he's on half the dose he was on per-op. He gets very painful cramps which are worse when he needs a poo, dreadful smelly wind and headaches.

Is it possible that the cause of his weak stomach muscle/GERD and oesophageal dysmotility is linked to his hyper mobility and low muscle tone? I think I'm looking back at all the problems he's had gut wise and trying to work out if they could all be connected in some way? It's like putting a jigsaw together.

*pre op

Yes hypermobility Eds can cause major gut problems AA it affects the tissues and the bowel etc is tissue/muscle so if can cause problems with the bowel can not see why it can not with the opshegours

People tend to think it's a problem with the joints only bit that means they don't understand that while yes joints are affected ( dislocations /pain etc ) it is because the muscles /ligaments tendons are affected and to week to hold the joint in place so the missing collagen can affect everywhere

Hello hypermobility thread. I posted here a while ago and now our Rheumatology is in a few weeks. Ds's most obvious problems are in pragmatic language and social communication. I'm trying to untangle the causes. In terms of sensory processing he is under responsive and needs a lot of movement to get his brain in gear (bouncing on the bed of a morning is encouraged).

Anyway, back to his hyper mobile joints. 1 how do we know whether he is in pain? He is very stoic and doesn't seem to notice, eg if he's getting too hot.

1. Can we expect any physio from the NHS to help with the hyper mobility?

TIA

answer to number 2 it will depend on are and if he is suffering physicaol problems

Your also going to be crosing the other border of having co dx and that does tend to throw them in a spin not now what is down to which .Thewy do like thier tick boxes

well, I was going to post to have a rant, both about the Brompton and the local paed, neither of whom were in the least bit interested when I asked about EDS/JHS as DD "wasn't bendy enough", but.......

went to the GP on Friday as she'd been throwing up since Tuesday morning, where they gave her anti-sickness tablets (she'd had similar back in November, got same tablets with a diagnosis of gastritis). Carried on over the weekend, with a lot of tummy/gut pain, so we went back this morning, me worrying about appendicitis . Different GP has a chat, he checks what medication she's on, and mention the fainting, he says "has she been checked for EDS"? So I start my little rant about how it had been dismissed by two consultants for lack of bendiness blah blah blah. GP gets DD up on the couch to have a look at her tummy, and notices the (really bad) stretch marks on her hips and tummy (and thighs, although he didn't look at them) and asks when they appeared, and had she put on weight, which she hasn't, at least not to the extent of causing more stretch marks than I have after three pregnancies!

Outcome is, he's going to speak to someone at either St Thomas' or Guys in London (he couldn't remember exactly which one) and see if they'll accept a referral to rule EDS in or out. Any idea the name of who he's thinking of, and what the waiting lists are like (currently at the Brompton the request for a three month follow up by the consultant meant an appointment in 6 months - I suppose we should be grateful she's not really really ill )?

Apologies for the length of this, it's therapeutic writing it all down,knowing that people will understand the rantiness .

Midnight - I saw someone at Guys who was dreadful, and someone at St Thomas' who was wonderful....however I can't remember either of their names. When you get your referral letter tell me the names and I will be able to tell if it is either of them! Sorry to be pretty rubbish in helping otherwise.

Midnight/Flying Fig there is definitely a gastro theme on this page. As THC says eds and gastro problems can go hand in hand. Pain, bad wind, vomiting are all things my ds has been affected by off and on since birth, and he is not really badly affected gastro wise.

Ihatecbeebies - Welcome and jump in!

Ellie - Prof Grahame and others speculate that eds and bjhs are the same thing, just that those dx with eds are more severely affected. I think it is most useful to think of the conditions as one, with varying degrees of severity and a variety of symptoms.....it seems to me that no eds sufferer has the same group of symptoms as any other. As THC says, they do like their boxes, so cross dx does rather confuse the medical professional

The Brighton and Beighton scales are also both critised by Prof Grahame and others, as they are relied on too heavily by less knowledgeable people. They focus on a small number of joints, yet we know that which joints are affected by hypermobility and which are "normal" can vary widely between patients. Both my ds and I have a confirmed dx of eds, a history of dislocations and subluxes, and a variety of other symptoms related to the collagen...mitral valve prolapse, migraines, gastro effects, miscarriage, etc. My ds is profoundly affected in his spine, shoulders and hips....but not so in his fingers, wrists and elbows, so he scores lower than me on the Beighton scale, and he is affected far worse than I. I have also stiffened up, mainly due to damage sustained, so I wouldn't score as highly now either....just 6/9. As with many things, a little bit of knowledge is not necessarily a helpful thing. If a medic relies purely on these scales, they would miss many, if they carried out a full clinical examination, they would be making the dx. I read and interseting article, in the Guardian I think a few years ago which talked about the issues in the rheumie community about missed dx, incorrect dx and weaknesses of the B and B scales.....would anyone like me to try and find it again???? I can try.

THC we got the arch supports in the post, I know I was taking a punt, but they seem to fit really well, and he is trying them out, and seems to be finding them comfortable. The gp ruled out Reynauds, as she said it had gone on too long for it to be that. We will see what happens. He is in a bad way at the mo, lots of shoulder pain, woke up with a sublux in his right shoulder this morning, now crippled with knee pain...and being very, very very grumpy!

Hope everyone is well today. Sorry about the long post.

I just read the recent posts on this thread, in particular midnights posts about her DC, gut problems, fainting, stretch marks, etc, and how she thought it could be linked to EDS. Some of that rang true with me so I looked on Wikipedia researched it and so many of the signs and symptoms relate to me, am I reading too much into it or could I have EDS?

Ihateceebeebies - I've found it very hard getting anyone to consider the possibility for DD2 (until todays GP who was quite cross at other doctors assuming it was just bendiness), so unless you have actual problems being caused by it, you'll probably find it quite hard getting it considered. In our case, the GP surgery are fed up to the back teeth of us turning up with yet another thing wrong, adn yet no-one at consultant/hospital level even considering the wider picture, so perhaps are being a bit more proactive (in a "get them out fo here and be someone else's problem kind of way ).

Most other people here are vastly more experienced than me in symptoms and so on, so will be better placed to help. In our case, I've had to lead doctors by the hand to where I think we need to be going, but have been massively helped by the nurse at St Marys who did the tilt test, who spelled out in her report the different things she considered should be looked at. Shame the paediatrician couldnt be bothered to didn't read it properly.

Sparkle, if when we get a referral letter, I'll come back and ask.

Interesting what you're saying about the B&B scale, as DD is clearly not nearly as bendy as some of you others on here, but has loads of the so-called related symptoms, and if that's used a a strict diagnostic criteria, rather than a starting point, it's not surprising there are loads of people out there who ever get anywhere.

I'm involved with a womens health charity, and we see this all the time - women who have all the other symptoms, but just not the "main" one, struggle to get diagnosed, especially when the starting point is a GP who vaguely knows the area, but hasn't read the most recent guidelines.

ishallwear midnight

ds3 scores highly but like sparkles ds he is affected way more than he should be .on other joints

referal from a Gp means 18 weeks froma consutant there is no maium time hence wht they say ask Gp to write and also if reeral done by Gp means that come sout Gp budget not the hospitals which is also part teh reason they ask

I have given up chasing Gosh any more reckon were get our appointment in June first before the inpatient rehab

Ihatecbeebies - You have to bear in mind that eds (and therefore probably bjhs) is a autosomal dominant gene...in other words you can not just carry the defective gene, you have to have the condition to pass it on, and as it is dominant you only need one parent to have the gene. If you can identify many of the eds symptoms it is a distinct possibility that you have this too. Incidentally there are a few cases of eds apparently being a genetic mutation. I appeared to be one of these, until my sister was dx (because what are the chances of that), neither of my parents was apparently affected, although other things I have discovered since make me think my father was probably affected..but he died quite a few years ago now, so it is impossible to check.

Budgets and passing the buck to others definitely has an affect on the way we are referred. Is there anyone who specialises in connective tissue disorders at your local hospital? You can try going through your hospital's rheumatologists bios to see, and ask to see that person. Just a thought.

You might also need to consider "Overlap disease" and Multiconnective tissue disorders, when other symptoms, not just those of eds are indicated, there is some new research on these. Basically the titles are a catch all for when a person with a dx connective tissue disorder starts developing symptoms of other seemingly unrelated connective tissue disorders. It is something they are considered for me, especially when I started getting blood results indicating vasculitus (sp?), but no other symptoms of vasculitus.

Midnight - positive thinking...."when" you get the referral

THC - I am not surprised, I can not believe how unempathic and short sighted GOSH are being. How is ds doing at the mo? Are you getting sorted for his school place for Sept?

We have his anuual review around May time and then will have more idea.MS is defintley out as is the MLD school

ideally he needs a speech unit with extra support for the physical issues , or the PD school but he is possibiably to physically able for them

so he is back to the net thing .Ds is doing ok his normal happy self though is struggling with tiredness a lot

The speech unit sounds the best option, if they will put in the human resources needed and provide funding for enough staff, or one to one support for his physical needs. Having said that I am very impressed with our local PD school. Yet again, you just need some answers, and some confidence that the LA are being as proactive as the situation deserves. I am glad he is ok, this is a hard season, cold and damp, I think that has a lot to do with my ds's tiredness.

The orthotist yesterday told me something interesting, bones grow faster than soft tissue, so soft tissue is always on catch up. That explains why ds is worse in growth spurts.... she looked at me as if to say it is obvious. Which it clearly is to me now I have been told that, so why when I asked the rheumie why growth spurts made him so much worse, did he look at me like a was an ignorant mother from Mars!

My father died when I was a baby and I am estranged to my mother, no other family except my lovely DS who has low muscle tone and hypermobility (along with dyspraxia, asd & adhd if it makes a difference at all?), without the information from the rest of my family would I struggle to have any kind of dx?

Ihate cbeebies - No not at all, when I was dx there was no evidence of family history, My sister was only dx in the last few months at the age of 40 +, I was dx at 18. My ds has many of the physical symptoms of dyspraxia, but it is just eds with its poor kinesthetic awareness, poor core muscle strength and poor gross motor skills.....I think that is quite common in eds.

Good news that the Lords has thrown out the DLA under 16 low rate care allowance down grade.

HIi am new and typed half my message ,pressed wrog button on (stupid)new computor and lost it! So if half messages come from me you will know why! My DS has h/m and low muscle tone,he complains of pain in his leg,feet,hand wrist ,knee loads,but as it is always going to scool or pick up i have sort of dismissed it as schoolitis but having read comments i think i need to listen to him more! He is also having severe problems at school..he cannot remember words or numbers ,he is a very small skinny (massive long feet,fingers and toes) year 3 but doing rec/yr 1 work. What he learns one day has gone the next.He does have support at school with things but i want to push for something more concrete as there are too many things going on and the missing link has not been found! Ihave got loads more to add but would love to see if this gets read first . thank you

Hi Bizzey - My ds complained for a long time about aches and pains before he started dislocating and subluxing joints. Kids with eds or bjhs also get very tired easily, as their muscles and ligaments are having to work much harder than a "normal" child, just to keep themselves upright. In terms of possible learning difficulties, it is not a symptom of eds or bjhs, or more common if you have hypermobility, so there be not be a missing link between the pains, and his learning issues, however separate learning difficulties could exacerbate the problems and visa versa, in that difficulties with fine and gross motor skills, handwriting etc are eds related, and it could be more difficult for a child with learning difficulties to express and explain their levels of pain. Does that help?

I can sympathise with messages going astray too....happens to me as well, but why is it always the long ones which have taken a while to write?

I hatecbeebies

no it should not as dx is based on what they see as presented .Mine was just obvious as i was there and so was DD and he took the optunity to exam them her and me and has seen ds1 and ds2 now and dx them

And since ds1 and ds2 have a different dad to my younger two the link was very obvious

Though even he admits is struggling to how ds3 has mutated to a different form and suspects a chromosome issue we been put forward for some Gentic studies

Sparkle sorry to be carrier of bad news .Mp have voted to over rulle the house of lords there is still going to be cuts.Thye have used a old rule and will push it through