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Hypermobilty or Ehlers Danlos syndrome.

(19 Posts)
stretchyandbendy Sun 20-Oct-13 10:47:01

My skin only stretches a couple of centimetres on my forearm, but I don't know what a normal amount of stretchiness is really. I know my son's orthotist couldn't pull any skin away from his neck though.

stretchyandbendy Sun 20-Oct-13 10:30:23

Both children are currently being assessed for ADD, so that's interesting

ouryve Sun 20-Oct-13 10:08:07

I needed transfusions after having both of the boys, btw. 7 units, in total shock

ouryve Sun 20-Oct-13 10:06:14

The stretchy skin test is usually done on the inside of your forearm.

Hypermobility and certain developmental delays quite commonly go along together. I don't know if there is any proven link or known common cause, though.

My boys both have ASD. DS2 was very late reaching most motor milestones because of hypermobility and low tone. He didn't walk until 20 months and he wore piedro boots with inserts for several years. He's much stronger now, at 7, and holds his back lovely and straight, so long as he's not tired or unwell. He's still quite squidgy, though (and very cuddly, with it)

DS1 is less severely affected, but it does cause him problems with coordination and his core tone has been really poor lately, as he's been going through a massive growth spurt. He has a lot of pains in his knees, feet and neck, which are often precursors to him being unwell. Almost an early warning sign.

I was only diagnosed a couple of years ago. As a child, I was very much like DS1, but just branded lazy by PE teachers. I've suffered from joint pains all my adult life and been fobbed off due to lack of inflammation, but i reached the point where I was losing mobility quite severely in my hands and showing signs of arthritis in so many joints that a GP who wasn't happy tp simply keep handing out tablets agreed with me that it wasn't right.

I don't have problems with scarring - apart from a few weird ones from ingrowing hairs, mine tend to be nice and neat, but my body is a mass of stretchmarks and has been since I started puberty.

I've found the hypermobility.org website very helpful. There's supposed to be a few good books out, too, but I've not been able to read them because they're paper books and I can't hold one of them for very long.hmm

Meanderer Sun 20-Oct-13 09:46:31

Stretchy, I've pm'd you.

Meanderer Sun 20-Oct-13 09:34:14

This is a good checklist of eds related issues. You probably won't have all of these between you but it gives you an idea what to expect specialists to look out for. http://www.ednf.org/documents/EDSinPracticeS.pdf

yellowsnownoteatwillyou Sun 20-Oct-13 00:55:28

I'm trying to see if I have either of these things just now as have had widespread pain since I was 5 months pregnant and now baby is 3 months it's still the same. Shoulders feel like they are dislocated, hips and knees are in agony. So marking my place to see if anything interesting comes up. Hope you don't mind. smile
I've got stretchy soft skin and bruise easily, and are /was more bendy before I was pregnant. I am very clumsy and take ages to heal. Local anesthetic does nothing, ive always had on off pain, and rsi in my wrists, but after the pregnancy its a ehile new level, i have been sent for blood tests and X-rays recently and am waiting on results as the pain is killing me and ruining my time with my new baby. So hopefully will know something soon, because I can't keep taking this amount of pain killers everyday just to be able to pick my baby up it get out of bed.

stretchyandbendy Sun 20-Oct-13 00:33:23

Also what is classed as stretchy skin exactly, my skin on my neck stretches easily to 5 centimetres and further on my upper arms, a bit les on hands and feet though.

stretchyandbendy Sun 20-Oct-13 00:24:43

My sister had a transfusion after giving birth not in pregnancy, she ad a transfusion she lost too much blood in labour and passed out.

stretchyandbendy Sun 20-Oct-13 00:23:35

Sorry about typos, fourth should read fourty, egg is ecg, IT is OT.

stretchyandbendy Sun 20-Oct-13 00:12:31

HI, sorry only just come back to this thread, the developmental delays are speech and communication, and also physical for example my seven year old is very clumsy, falls a lot and is under the 10th percentile on a movement test done by an IT, she commented on his very flexible fingers, my youngest cant get up and downstairs and he is 2 and a half, he can't jump, falls over constantly and won't walk very far, he also walks on his heels a lit of the time and sometimes on his toes.

Yes we all have soft skin which feels powdery on our face and slightly moist everywhere else. I am worried as my 6 year old has very prominent veins all over his body but feel better knowing that hypermobility is less common in vascular type. My 7 year old has never had a hard stool, has history of severe reflux, milk intolerance and benign heart murder. I have tachycardia but an egg was fine. Youngest also had reflux. My sister has irritable bowel syndrome.

In Labour with my children I labourers extremely fast, fourth minutes from start to finish and lost a lot of blood with the 7 year old because they think the cord had started to come away from the uterus. My other sister had to have a transfusion in pregnancy.

After reading about a lot of signs I am almost sure we have it, we all have bluish grey bits in our eyes in the corners and we skin coloured lumps on feet and ankles when pressure is applied. I have quite large lumps at the outsider of my ankle joints that feel as though they are filled with liquid maybe.

We are all slim and Tall my children are on the 92nd centile for height and 75th percentile for weight, my seven year old looks out of proportion, his arms and legs look too long for his body if that makes sense, although that may be because he is skinny. My Dad had scars on his knees which were abnormal and also rounding scars on his arms, my seven year old has some skin coloured scars on his forehead and scars on knees and spine but they are not very severe. I also always have tiny cuts on my hands and have lots of bruises that take ages to go.

I have a peadiatrician appointment on Monday so will mention it to her. I hope she takes it seriously and refers us.

Meanderer Sat 19-Oct-13 09:27:53

Ps as Arizona says there's a school of thought that you shouldn't do yoga as you might overextend joints. My experience of yoga has been overwhelmingly beneficial but you need to really know which joints to be careful with and that you are strengthening surrounding muscles rather than stretching joints, at least until you get experienced at it. As a beginner in yoga avoid 'yin' poses which do this...longer term I think they may also help in certain joints but not in others. Don't discount yoga altogether though, find a good teacher for you, they vary massively. Mine is a physio as well so that's perfect. Pilates is definately useful though, was recommended by my rheumatologist.

Meanderer Sat 19-Oct-13 09:21:46

Yes, what others have said. Get a rheumatology referral for all of you. You might also have digestive symptoms? And when you say developmental delay, are they all physical? If there are any learning or communication delays these can also be linked. It's rare so don't worry if it's not there, but if it is early intervention is helpful.

If there are digestive difficulties consider gluten free and maybe casein free diet but get some advice from a BANT registered nutritional therapist, especially with the latter.

Eat plenty of sulphur containing foods like onions, cabbage, broccoli, and leafy greens too. Sulphur is important in building connective tissue. Also vit C rich foods and zinc. You might consider for you, a glucosamine supplement to protect your joints before you get older, and do 'isometric' excercise where muscles get worked against themselves, Pilates, yoga, swimming and cycling good too.

I wish I'd known all this earlier. In my 40s and quite a bit of trouble with joints... Good luck.

copycat Fri 18-Oct-13 22:13:48

You definitely have EDS symptoms and, yes, I think you should ask your GP for an appointment with a rheumatologist with a view to getting a diagnosis ... stretchy skin, bendy hypermobile joints, hernias, resistance to local anaesthetic, scoliosis, haemorrhaging, ankle, feet and knee pain, flat feet, poor skin healing, keloid scars, heart valve problems, long arms and fingers ... Can you put your hands flat on the floor when you bend over without bending your legs ... all EDS symptoms. I hope your GP is sympathetic and interested. Good luck.

RaisingthedeadArizona Thu 17-Oct-13 22:14:05

Oh and my DD, late Mum and my brothers all have/had very long arms, legs, spines and longish faces, in proportion to their height. They all give/gave the appearance of being taller then they actually are/were. All very thin too. Whereas I'm small and dumpy but still have lots of other EDS signs.

RaisingthedeadArizona Thu 17-Oct-13 22:10:47

There does sound to be a fair few EDS symptoms there both for yourself, your relatives and DC.

I agree that a rheumatology referral is the best bet.

My DD has ulcerative colitis along with pronounced hypermobility and back and hip pain. It was her consultant who spotted a possible link between the two and questionned whether all her various health issues are caused by EDS. My late mum, her sister, my brothers and I all have joint/back problems, hypermobility and gut problems but DD is the most severe. Do you all have very velvety, soft skin on face and body? We all do. I'm in my 50's and have baby smooth, soft skin which I don't think is 'normal' for someone my age.

There's no cure for EDS as far as I'm aware but physio, occupational therapy can be helpful as humancatapult says. It's as important to know what not to do - ie exercise that overextends the joints such as yoga, as well as what to do.

Sorry about spelling there is long thread in sn children to <can't link on phone sorry>

Hi
You often can not get a diagnosis of eds to least 5 as young children can be flexible so a lit of proffesional will not see

Therr are several types of Eds most common being type 3 unfortunately there is no test fir this tuoe it is pure clincal diagnosis

A lot of debate going on about that and hypermobilty syndrome and the differance beywern them

Your best bet is referal to rheumatologist but I woild ask your son paed to refer him to OT and physio as they can help with exercise.

Eds 3 is quite a spectrum on whole 2 of my chikdren have no major day to day issues with it one other has gut issues (my youngest has another type )

Ask paed for physio and Ot to help strengtyen joints and prevent damage

stretchyandbendy Wed 16-Oct-13 23:48:41

HI, I am a bit confused about the difference between hypermobility and eds. I have just found out that my children are hyper flexible and am wondering if we actually have eds.

My 2 year old has been prescribed insoles due to flat feet and the orthotics noticed that his knees are extremely flexible, so I checked his other joints and they all are, he also has developmental delays.My seven year old is even more bendy and can't ride a bike or trike, has trouble with cutlery, buttons Tec and has problems with proprioception. I have bendy joints everywhere and can move joints in my hands in and out of joints.

We all have very stretchy skin, especially at the neck, hands, feet and under our upper arm and forearm, my children also have stretchy skin on stomach and back, and kind of dimply skin on the stomach although they are slim.

I have blood spots a bit like petichia all over my arms and thighs and also varicose veins and spider veins. I have scars on my knees. My youngest is prone to petechia when he bangs into something. I bruise easily and the bruises take a while to heal.

I can see we have a lot of symptoms but could it be eds, I have never dislocated any joint and only have pain in my ankle, knee and toes, I don't have widespread debilitating pain. My sister has lots of pain in her back, shoulder and ankles with no known cause. My aunties both had early onset arthritis which started in their twenties and my dad had joint pain also.

If it could be ehlers danlos is it important to get diagnosed and if so how do I go about that, can I ask my children's peadiatricians to refer us somewhere or will I need to go to our GP?

Thankyou for reading if you got this far smile

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