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any EDS or HMS parents out there?

(83 Posts)
tranquilgardens Sun 10-Jul-11 17:52:57

Wondering if anyone out there with similar issues, and wanted to chat?

Flightless Wed 09-Apr-14 18:54:38

I have eds and dysautonomia and 1 baby of my own and 3 step children altho only my little one and stepson live with us full time ATM

BeyondIsBloodOfTheDragon Tue 01-Apr-14 12:17:10

Hi again

Just want to let you all know, I'm finding a group called "hypermobility support group uk" to be very helpful on facebook, lots of parents with eds/hms on there smile

flow4 Fri 17-Jan-14 05:50:12

Hello. smile Just checking in... I got a diagnosis of HMS last August, after a couple of years of serious problems and a lifetime of bendiness. I also have arthritis in multiple joints - incl. certainly knees, hips, hands and jaw, and probably feet and shoulders too - and can't walk without pain ATM. I'm reeling with how fast my mobility and other abilities have been deteriorating, tbh: five years ago I was dancing salsa, climbing hills and playing 5-a-side football; 2 years ago I was still able to walk a mile or so without thinking; now I struggle to cross the landing to the loo. sad

I struggled to get a dx for a couple of years, with GPs telling me it was all depression or anxiety. When I finally got to see a rheumy, they diagnosed me at once, but because the severity of my arthritis wasn't picked up for a few months, I had physio which made me worse, and actually dislocated my kneecap. sad All medical attention so far has been on my joints - and indeed they are bad - but I have other problems including circulation issues, palpitations, occasional chest pain, and bladder and bowel 'irregularities' that I'd like advice on... I'm back to a (second) rheumy next week, and waiting for an apt with an orthopaedic surgeon...

Fun, isn't it? hmm

Hello! I'm already on this board due to my PsA, but just had HMS confirmed too. Where do I go from here, rheum was quite dismissive and more concerned with my arthritis?

jammypuddingmonkey Tue 22-Oct-13 14:40:16

My dh has HMS, he's not well enough to work at the minute due to it and I'm his carer.

Just wanted to ask, how long did other people's appointments with Dr Prof. Graham take to come through? As dh has been waiting two years now- and last April he was told he's still on the list- they said they might want to see our children (who are all bendy and a couple of them have pain from it) at the same time too. We can't afford to pay privately. He had autonomic testing this year, but he wasn't able to do the tests for POTS (too heavy for the tilt table! He's since lost 2 stone)- so apparently that means he doesn't have it- but they said they want to see him when he's a bit better and can do them hmm.

We're having fun at the minute trying to get our house adapted- we were moved into this property because it can be, but it's a fight. OT's have been hard work, to put it mildly. Most recent thing is that dh doesn't need to have the front door accessible when he's using his chair- which if I'm not in, he'd need, because he falls when he walks. Makes such a difference to him when he uses his chair (energy levels, pain etc)- but the house is impossible to get around as it is. So frustrating trying to get it sorted out.

Corrigan92 Tue 17-Sep-13 11:25:18

fazerina there eds will not show in blood tests etc, its diagnosed by symptoms and some thing called the beighton scale, which is where they manipulate your joins to see how flexible they are and you get points for different ones and then depending on the points you can be diagnosed, its often diagnosed by geneticists who look at your family history etc as it is a genetic condition. once diagnosed they take 3 pieces of skin normally from your inner arm and send them to labs which can normally tell what type you are and rule out vascular if needed. hope I helped

Corrigan92 Tue 17-Sep-13 09:55:06

I have.!grin I have eds multi type with crossovers. with me the thing that got me diagnosed was my digestive system I have intestinal failure gastropareses , pseudo obstuction and ago IOC bladder along with lots of other bits like pots etc. my main prob was eating and was commonly told I had a eating disorderer they soon found out noting worked and so I was tube fed. I experienced this from 8 but didn't link everything to get her eds wise until I was 17 ( ow 20) I was also told I'd never have children. believe it or not.! BH how do you guys find parenting, I have a brilliant partner/carer who is amazing with his little girl and I don't know how is cope with out hi , so my hat goes off to any single mum edsers ! intact I have a page on Face book called eds awareness fundraising and hope xx

Fazerina Tue 23-Apr-13 09:50:26

Oh, and I forgot to ask, how exactly is EDS diagnosed? The rheumatologist had several blood tests done on me an an x-ray. Surely something would have shown up..?

Fazerina Tue 23-Apr-13 09:20:46

Hello everyone! Not sure how often this thread gets read, but hopefully someone will be able to help.. I wassl diagnosed with HMS in January this year, but have now been told by a friend I probably have EDS instead. What's the difference?

My symptoms include: chronic joint pain, chronic lower back pain, stiffness all over my body in the morning and after having sat down for a while, flat feet and the associated pains in my feet, ankles and calves, one of my elbows is kind of stiff and painful and won't straighten properly, pains in my neck and fingers, migraines, fatigue and IBS. I also have very receded gums, re-occurring chronic uveitis in both eyes and when I was younger I had a heart murmur.

The rheumatoligist I saw was very (!!) Unhelpful and unfriendly. He told me I was just bendy and to get on with it basically. I am overweight, which obviously is a problem, but he made that into an opportunity to patronise me and make me feel uncomfortable. Anyway, I got a referral to a dietician for the weight issue and physio. I saw the dietician, was given some general guidance and then discharged. I have a lively 2-year-old, work from home as self-employed and no childcare, so have not been able to make an appointment to see the physio.

Anyway, what I wanted to know, is how can I get an appointment with this notorious Doctor Grahame I keep reading about here? We are planning for second pregnancy and this time I would like to avoid the problems I had last time with debilitating SPD and a horrible delivery so I would like to get a proper diagnosis on my condition. Do I have to see him privately, or can I ask the GP to refer me?

CouthySaysEatChoccyEggs Sat 30-Mar-13 10:59:23

I and 3/4 of my DC's have HMS. I have scraped together enough money to take my DS2 to see Prof G in May. It's taken me 3 years to save this up. I'm certain that we all have EDS, due to other issues we have.

We all have HMS. I have arthritis as a result of it. I'm going for Xray's next week, as the Doc thinks there are serious issues with the majority of my joints. I get through the day with painkillers.

I also have IBS. And epilepsy - but tbh I think it might be POTS, as my epilepsy dx is under query right now due to my atypical seizures. I have very low blood pressure too.

I also have a leaky heart valve.

I also have to have orthotic shoe inserts. My back and neck are basically crumbling, and my wrists sublux 15-30 times a day. Lately my left big toe has started to sublux daily, as has my elbows, knees and fingers. I was born with dislocated hips.

When they try to take blood from me, my veins constantly collapse, making it difficult.

I am resistant to local anaesthesia too.

I have cigarette paper scarring from my stretchmarks as they split to raw flesh and bled every time I was pregnant.

I score 8/9 on the Beighton scale.

My DS2 is the worst affected - he didn't walk till 3.7, talk till 3.6, he is now 9yo, and scores 9/9 on the Beighton scale. He's recently been dxd with kyphosis, and now needs orthotic inserts (again) for his posture. He's currently having hydrotherapy in a bid to keep him out of a wheelchair.

My DD and my DS3 are also affected, but not do badly (though bad enough). DD scored 6-7/9when she was younger, and now has frequent knee subluxes. She also has two leaky heart valves.

My mother and my Dbro also have HMS.

There are numerous things that point to EDS for ALL of us, but it is scraping together the money to see Prof G privately that's the issue - my PCT refuses to refer on or test for EDS "as it will not change our treatment plan from that of HMS".

Frustrating as due to being a lone parent with 4 DC's, I can't work, both due to my own disabilities and due to caring for them. All 3 of my DC's with HMS also have 'Autistic traits' (for the older two), and the youngest is being assessed for Autism in may. Plus they all have OTHER medical needs too!!

Trying my best to fit in 4 lots of Physio, 2 lots of Speech Therapy, 2 lots of play therapy, and med rounds PLUS keeping the house slightly liveable, plus all the admin that goes along with 3 DC's with disabilities.

My 4th DC (actually DS1 is the one i haven't spoken about) is just starting to be looked at for Aspergers too. And I believe that he is mildly hypermobile, but hasn't been dxd.

All good fun!

linzi381 Wed 27-Mar-13 12:38:57

Hi i also have eds would love to meet others for a coffee.

Monthlyfestivities Wed 28-Nov-12 21:42:52

wish try the HMSA charity boards. A lot more active.

So I have eds III, finally started ttc after debating it for years, figured if didn't do it now would never be able to do it. Terrified of how being pregnant will effect me, the not knowing about passing it on etc. That's me!

Wishuponastar82 Mon 27-Aug-12 20:24:46

Hi everyone,

Think I'm in the right place to post,

My son was diagnosed with quite severe HMS at 2, he wasn't a bum shuffler but did commando crawl from 1, didn't sit up unaided till 18months and is now almost 2 1/2 and is no where near walking. He's a lovely boy and im swimming him twice a week if I can doing anything to get him to move in to water also has a scuttle bug and he's buzzing around on that. He's see's his paedatrician every few months and his Physio too but after reading all the posts, if we have more children are they likely going to have HMS too?? I'm sure you all know it's just really hard watching everyone else's children doing everything your so desperate for yours to do for you and especially themselves.

There isn't much support out there I guess unless you have a little one who has the condition you don't get it.

I'm scared he's going to go to school crawling!!!!!!

BeachBlue Sun 08-Apr-12 23:53:49

Hi, yep I have type 3. Finally decided to try despite the inheritance etc. Any tips for surviving pregnancy, and actually being able to look after a baby? I use a wheelchair anywhere that isn't the house, and i really don't know how I'll lift a baby out of a cot.

Hi Beachblue - nice to meet you. I hope the fact that no-one replied to your first ever post on mumsnet has put you off.

What type of EDS do you have, if it is type 3 hypermobile type you are like me. I have three beautiful dc. One has inherited eds from me, that is my ds, but the other two, my dd's have not. Ds is quite affected, more than I was told he could be....but he is bright and wonderful and a big blessing in everyone's life. Good luck with trying for a baby.

Double good news about ss, not so good about leaving you bed bound. I do hope you are feeling better now.

BeachBlue Wed 07-Mar-12 21:45:58

Hi, this is my first ever post on mumsnet!! I have EDS and have spent 4 years agonizing over whether to have a baby (pass it on) or if I'll cope with pegnancy and childcare. Any advice? Think finally Decided to start tying next few months

DoubleLifeIsALifeHalved Wed 29-Feb-12 22:09:27

Hello just checking in, hope everyone is ok, it's hard to keep posting when life is so tough isn't it.

To update you, success from ss, after much sternness & legal speak they gave me a lot of hrs direct payments from adult ss & no child ss or risk of neglect concerns - thank goodness. Unfortuneately the effort needed to do this deteriorated my condition so much that for Jan & most of feb was completely bedbound. Trying to get back from that set back is going to be hard, but I have to somehow... If only to employee someone with the direct payments as been too ill to do it.

Anyway, thats me for now

romina Fri 10-Feb-12 15:18:14

Hello,

I'm EDS III too. I go up and down a lot in terms of health. Compared to some I'm very lucky, I don't dislocate, but have chronic back, neck, shoulder and foot pain, plus odds and ends elsewhere. I was diagnosed about 12 years ago, so have been round the block a few times....
I dis a major graded exercise programme which did really help enormously. I now find that if I keep it up Im a lot better - but its very hard when it also hurts so much.
Hope you are all doing OK - awful situation re SS.
big hugs

Gosh I hope that your meeting with ss went ok. I have always avoided ss, out f my own paranoia I am sure.
I think you need to go back to the gp, and discuss options like physio, OT, different medical options too, and see if there is anything extra that can be offered for support. My eds definitely goes in cycles of how manageable it is. was much worse in my 20's than I was in my early 30's. Now in my late 30's (at least for a few more weeks) I have various issues, but as I am not working, just being a mum at home and carer for my ds, I find it easier to manage, and I am better at saying "I'm not doing that today as my pain is too much", and just leaving things, even if that means no bath for the dc, or a dirty house for a few days/weeks blush.

DoubleLifeIsALifeHalved Mon 05-Dec-11 11:52:46

Hello everybody, sorry I deluged posted then decided I'd killed thread & haven't been back since! Won't make that mistake again!

Has anyone actually managed to get their eds in a manageable state... I feel like my whole life is aimed at this, & wonder whether it's a myth?

I have been dealing with social services over the last few months, trying to get help so I can stabilise condition, vs flig my body to death. It's been pretty bloody awful though, how many hoops? Assessments, referrals, reassessments, incorrect notes, incorrect referrals etc...

Finally ss have said they'll try & provide some 'respite' by helping with my 20 mth ds... However they can only get the funding for this if I agree that he is in danger of being neglected!!! So if I dont get help & get iller then ds will be at risk... But I am feeling really upset & panicked about this... They are tryi g to play the system in my favour so I get help, but actually what they are doing is saying because I am disabled I am a bad parent, & calling into question my bond & suitability to be a parent... NOT a tradeoff I can make...

Has anyone else been put in this position? From the internet it seems a common issue for disabled parents, but I'd lke to know how to handle it? I need to first get my health under control & then I will fight this prejudice & awfulness to the highest level I need to, as it makes me so angry that disabled people have to go through this... However how can I get myself better enough to change things unless I access help? Oh it's all pretty awful.

Have ss visit tomorrow & will be rejecting their kind offer of labelling me a neglectful parent & plead with them to find another way, but these particular peoPle are the only ones trying to help so am scared I will alienate them & then where will I be?

I'm here....sparkles waves to grumpykat

No wonder you are grumpy.... wink

I have to say the cynical side of me doesn't believe for a minute that your kidney disease is not related......sorry sad

I hope you are doing ok on the steroids, lesser of two evils I guess.

grumpykat Sat 19-Nov-11 13:24:32

<pokes head round the door>
Hello? I've just found you. EDS type 3 checking in to say hi. Fairly mild, subluxes and indiscriminate pains notwithstanding. Complicated at the moment witha recent diagnosis of kidney disease which no-one is prepared to say whether or not is EDS related. I'm sincerely hoping not, although it is a connective tissue issue (rhyme- ha!) as I'm having to take a high whack of steroids daily, which increases joint instability and bone degeneration, not what I need.
Who's here?

Been knocked flat for past three days with monster migraine, still feel awful. I hate EDS! Hope you are Ok tranquility.

You may be over thinking that, to be honest he probably didn't put that much thought into what he was saying in the first place angry If you think that with our joints, our muscles are already having to work much harder than a normal persons, just to keep everything in place....but the way he said it has left you feeling responsible for a medical physiological truth and that is not on, AT ALL! It is very hard, and reality dictates that it is not possible to do what the consulatnt was alluding to....that is what makes me so angry, they are so stupid sometimes.

tranquilitygardens Mon 10-Oct-11 14:34:44

Sorry you are feeling down in yourself x

Maybe, my ribs are sore too, due to the back spasims on the left hand side so can sympathise there!

Need to go back to the gp and get better combo of meds tomorrow!

I was feeling a bit peeved at that consultant I saw for the children last week, I felt positive there, and now I am feeling like he was using very well thought out language that was basically blaming me and the children for not working double as hard as everyone else exercise wise, for the same results a "normal" person has if they do nothing at all.

I feel I have a bitter taste in my mouth in general from the medical profession in general at the moment.

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