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.

Oh boy here we go again. Last night ds lost total bowle control and didn't know he had....this being ontop of complaining he had cold numb feet, and now he is home from school after spending much of the morning in so much pain with his neck, on maximum pain killers, warm compress and seemly no relief from either! Sop I am guessing that he cold numb feet and bowel control is related....what do I do now, there seems little piint in taking him up to the hospital, they do nothing anyway...... bugger (cuse my french)

sparkle have replie don yahho sorry missed you

does ds have constiaption now an d then as part of eds the bowel can be very stretch and not work and has problems with the tone so he might not have felt it

thankyou,hopefully he will now be my current rather than ex sparkle but we are going down the counselling route as have had many problems and although this wasnt planned i really want it to all work out. he is a bit reluctant but ive said its counselling and trying our best as i really dont want to be on my own anymore.

hope you are ok really sorry to hear about dh job sparkle that must be such a worry and i hope it all gets sorted out soon.

hope everybody else is doing ok too.

ds got his dla renewed it took them AGES they had to get to get reprts from all 3 of his consultants and they kept writing saying it was taking a bit longer etc etc but they have kept it at the same level for the next 3 years which is a relief.

also, sparkle ds has problems with bowel he will literally go a week not going then is screaming and when he does finally go its not nice and he has to go there and then at that minute or itll be an accident, he has lots of wetting accidents too they asked a lot about it when he had mri of back at gosh so it may be related to back/neck problem something to do with nerves i think and not just the eds bowel thing but im not sure

Ds actually is very regular so to speak and has not had constipation, this was just he needed to go, and went without knowing he had done it. He has had urinary incontinence over the weekend, tingly feet and losts ofneck pain. We measured him today, and guess what he has grown over a cm in the last 6 weeks.....I am sure growth spurts make it all worse, the drx just look at me like I am mad when I say that to them. .

He is back in school today, but in his collar, which he wore to sleep last night, losts of pain, but no phonecalls yet so that is good. I saw our gp on saturday and he said take him in to them and they will do an emergency admit to the children's ward if the symptoms continue much into this week, or get worse. At least that way we don't have the whole a & e nonsense. I am still sure ds's issues are spinal and not just eds....proving it is proving hard though.

am floating on yahoo

I will find you

I hope you don't mind me posting here. I had a thread in Children's Health and the lady who answered suggested I ask here.
My DD(3) has been diagnosed with Hypermobility. She isn't showing any signs of pain with it so far. However, she very easily feels the cold and once she is cold it takes a very long time to get her warm again. Her face is pale, her lips are blue and her hands and feet are absolutely freezing. Yesterday morning I had to bundle her in a duvet, heating on, warm drink but it still took ages.
I have heard that this could be connected to her Hypermobility with it being a connective tissue disorder and just wondered if it was something anybody else had experienced and if you had any advice about it.
Really sorry if you feel I'm intruding on your support thread. I have been scaring myself on Google and wasn't sure where else to ask and yesterday morning frightened me a bit.

DD2 is of to see orthopeadic surgeon next week. We know she has hypermobility and we have spent so much time in A&E with this or that subluxed that they know her name. What concerns me though, is she doesn't feel pain to the extent that most of us do, however she often complains that things hurt 'inside', but if she massages her abdomen or stomach she can make it better. Does anyone know if this is part of it?

Hi

No jump right in , new people always welcome

Have you googled ranaurds both ds1 and ds2 have it alongside eds . Bowel problems are common to as the intestine are tissue so can be affected

Ds2 prime example has crohns currently in hospital after having done if his intestine removed

Will pop back later answe more in deapth

Arians hope your feeling better

Sparkle huge hugs hope your ok and Ds and your Dh

Dawn we have been told that it is typical not to feel the amount of pain, as when you are born with it, you have a higher threshold. It would seem that pain registers when it is unbearable rather than just 'there'. Doesn't make it any easier to deal with, or live with though!

No, it doesn't and it's not easy when you go to A&E and they say, she's not in significant pain. As I said, they know us now, but it's taken a good few years to get them to realise that there is still damage, even if she's saying it's a bit of an ache!

Hi guys, and welcome Scrotey and Dawn. The fantastic thing about this thread is you can ask questions about the conditions without having to scare yourself with google, because most of the mums on here have some experience of most of intricacies of the conditions.

Pain is an interesting one, as some of the reports written by doctors talk about a low pain threshold being associated with eds and hypermobility. But I would strongly disagree with that, as I think most would on here. For me and my ds (we both have eds hypermobile type (formally known as type3)) some of our problems stem from not getting the right pain signals, and going too far and hurting our joints as a result, therefore a high pain threshold which does not give adequate feedback about pain levels.

My ds is typically very warm, but he has neurally mediated hypotension, as do I, so our hearts are working very hard, which has an impact I think. However when he gets very cold, it can take a while to warm him back up. As THC suggested I would think about investigating raynaulds for symptoms that severe, and it is a know link with EDS.

Also as THC says, bowel problems, food intolerances, and other intestinal" conditions are related to eds and hypermobility, so it is quite possible that your dd2 is experienceing that Dawndonna.

Ds has had a dreadful 2 weeks, loss of sensation in feet, lost bladder and bowl control, vomitting with severe neck pain, dislocated fingers, lower back pain. He seems better today (even the dislocated fingers which he only did yesterday) so fingers crossed....obviously not his as the repercussions could be painful Dh is very conflicted about what to do, and is considering attempting to set up on his own. I am trying to be positive and supportive, ut also not push him into things he is not yet ready to discuss.....

hello , i have finally been able to get back on the computer after more horrible migraines but feel loads better now-hopefully i have seen the end of them.

all 3 dcs and myself feel the cold easily and i usually have purple/blue finger and toe nails and dd1 gets blue lips. I cant take the dcs swimming as within a couple of mins they are blue and shivering so it ends up being a waste of money.I dont know if it is the eds or just a family thing as my mum and sister are the same and we are all quite tall and thin so dont have any reserves to keep us warm, especially ds who is so skinny and doesnt eat well due to allergies so he is always cold.

hope your ds is feeling better sparkle it sounds like you have all had a tough time the last few weeks, hope the fingers are ok my ds is always in horrendous pain when his fingers dislocate its really horrible.

some good news- i had a scan last week as have been having horrible cramping/stretching pains and was literally doubled up but the baby is fine and the sonographer was able to tell me that iam having a boy ! ds was so pleased he was desperate for a brother when i had dd2 so it made his week. I am still getting the pains but they have said they cant find a reason for it so have told me not to worry. The school run is becoming a massive struggle for me though but im leaving 15 mins early so i can walk very slowly and it seems to help!

Ariane sounds like your ligaments are already relaxing, and causing the pain. Take care of yourself, and put your feet up as much as possible.

I think that circulation issue you are describing sounds very familiar....

Im hoping thats all it is as uncomfortable as ive been i have been worrying myself that its something worse, i had problems in all my previous pgs with pain/difficulty walking but this has been agony and i keep expecting the worst to happen.

Have also oddly had terrible problems with my ankles they keep clicking and popping but not the usual painless clicking it actually really hurts and when i did it the other day whatever had clicked burst a vein on the top of my foot which within seconds was hugely swollen bright blue and purple and excrutiating i put ice on it and its now a bruise that covers my whole ankle and foot so im feeling a bit sorry for myself.

ds is off today because of the strike so im getting a bit of a rest my lovely mum had dd for me last night and took her to school today (they only shut the first school not juniors) and my sister did my shopping for me and just dropped it round so iam being looked after by them- unfortunately somebody else is not pulling his weight and seems to be reverting back to how he has always been but iam determined to persevere as i do want to be a proper family. counselling was a no no as he wouldnt go but im trying so hard to get him to see how good things could be> I think he has a real committment problem and its very difficult to understand.

Iam ordering dd a new bed today as her back and shoulders have been sore and her bed was my old one i got when i was 9 so she is very overdue one! the mattress just feels like springs so it will be lovely for her to have a new one.

I am sure a new bed will help her.

I have just got a letter giving ds an appt as Birmingham children's Hospital cardiac unit on Friday! Short notice..now to train and walk or drive and park.....either way will be a nightmare.

wow that is short notice ! i would drive and walk as when ds had appt at gosh for mri and we had to get train home he was exhausted by the end of day and didnt like being on the train /waiting around.
good luck i hope it goes ok

I think I have decided to drive, althoughb as I seem to be incapable of making decisions at the mo, who knows what I will think in an hour.

Got a nondelivery of post notice today, for a letter for ds, probably from hospital, and have to wait 5 days and pay fee to get it from post office....! Don't know who I am more cross with Post office or NHS. I am going to ring hospital later, and find out if it is an appointment letter at least, just so we don't miss the appointment.

hope the appt goes ok sparkle and that you got there ok.

ah found it . sorry been made here then was away last week
Nothing from Gosh and i can not be arsed to chase them any more .

hope appoinment went well sparkle

Hi ariane

outch on the ankle hope your resting up

dawndonna

We did the same went to a&e no his knee can not be out he be screaming .ok its looks bit swollen but to be sure we will xray < read to keep mum happy > cue opps ds knee cap is out bnut we cna not understand when he is not screaming

Ahh the "it can't possibly be dislocated, oh look it is dislocated" conversation.... so familiar.

The appt went well, so we wait to see.

My daughter got the hypermobile diagnosis about a year ago and we realised that I am too! Luckily I t doesn't affect our daily lives too much. I've got her swimming a lot and had arguements at school about her wearing trainers not plimsolls.
Reading the symptoms for eds I have everyone on the list so I suspect I might have it.(explains a huge amount, including the excellent complexion!).

So just signing in really and reading with interest.

If I think I have eds do I need to get my heart checked out and/or get a definitive diagnosis?

hello all,

not sure if I should add this here or start a new thread? would be glad of any advice.

I expect I am about to explain this quite badly. I have posted a few times about DD who has hypotonia. She coming on reasonably well with physio and OT help and seems to be getting on fine at school, though I worry a bit about handwriting etc due to motor skills delay (she was a late walker). Her coordination is improving and dressing etc is ok, if a bit laboured.

Anyway, I know that low tone can also be a symptom of/associated with other conditions. However, I think she is a bit too young for a dyspraxia diagnosis, for example.

She did a lot of flapping when she was younger though this has abated (still does a bit of tapping when playing on her own). She is almost 6, reasonably sociable if a bit shy and seems to have formed particular friendships at school.

Could she just have low tone or are there inevitably other issues? Is anyone out there who is just a bit badly coordinated and bendy?

thanks, sorry, I meant this to be short!