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Joint hypermobility syndrome and prgnancy

(10 Posts)
Rosey135 Wed 06-Jul-16 10:01:24

Hi, I've just found out I'm pregnant and have joint hypermobility syndrome, I have done some reading up on the posibble problems this can cause but would love to hear people's experiences and get some support or support each other.

I was diagnosed 5 years ago and am yet to find someone in the medival profession who knows what it is or knows how best to deal with it, I have had to.do most of my own research online.

sparkleshine83 Wed 06-Jul-16 11:30:41

Hi Rosey,

Congratulations! I have hypermotility and am 29wks. I can't comment on labour as I haven't experienced this yet (!); my main advice to you is to watch in the second trimester for signs of SPD (pelvic pain) www.nhs.uk/conditions/pregnancy-and-baby/pages/pelvic-pain-pregnant-spd.aspx as this is caused by ligaments and joints relaxing too far due to hormones and if you already have joint hypermotility it increases the chances you will get this. I have been lucky it's only been mild for me but I did myself an injury running and you may want to talk to a GP or your midwife about physio or at least recommended exercises to strengthen your pelvis.

Good luck! smile

DesignedForLife Wed 06-Jul-16 14:32:31

I have hypermobility syndrome, it didn't affect my first pregnancy much, but I am suffering really badly with SPD this pregnancysad

scaredofthecity Wed 06-Jul-16 14:37:40

I do. I'm at work but I'll come back later

Kidneybean2016 Wed 06-Jul-16 17:55:05

Me too. I'm 28 weeks. Was referred to consultant early on and discharged but since had to see the physio. Had exercises and a support band. Really helping so pleased. Hope all is ok with you. Just take it easy if you can x

Jjspoon Wed 06-Jul-16 20:26:27

I'll be keeping an eye out on here as I have hypermobility too! I'm only 5 weeks though so no problems yet but I've always had really bad problems with it in my hips mainly, needing physio and in agony and unable to walk when it is really bad so I'm really hoping it doesn't make this pregnancy a nightmare. There seems to be mixed experiences online when I Googled it the other day but fx for a quick labour and none of the bad bits lol

mineofuselessinformation Wed 06-Jul-16 20:42:08

I'm hypermobile, but didn't know when I was pregnant. In my first pregnancy, I suffered badly with sciatica. In my second pregnancy, I had bad SPD (the midwife cheerfully told me I could well end up on crutches!), but I managed with the help of a belt which held the pelvis firm (not comfortable on a long car journey though.)
As you've got a diagnosis, make sure your midwife knows and it's recorded on your notes. I think people are much more aware now, and can help you avoid any problems (I couldn't climb into a car without swinging both legs together for years after the birth of my dcs).
As you get nearer the end of your pregnancy, your midwife might do a trial to see how far apart your legs can go (to ensure you don't do any further damage, and to avoid pain), to see if it might have any effect on the birth.
Good luck, and congratulations on your pregnancy. smile

barabasiAlbert Wed 06-Jul-16 21:40:52

Hi Rosey, i've got hypermobility and have, at 20 weeks, only recently given up running and cycling because of sudden onset of PGP (=SPD) a couple of weeks ago. I took up swimming instead. It still hurts and my pelvis is still all creaky/unstable but it's not as bad as it was a couple of weeks ago!
Saw a physio yesterday who gave me exercises and told me to get a support belt - and as perople have said above, do anything that will avoid putting shear forces on pelvic ligaments - so avoid anything that involves straddling (getting in and out of a car, riding a horse...) or alternating-side weightbearing with lots of force (running, and particularly cycling standing up...).

As for finding people in the medical profession who know what it is, they've all probably heard of extracellular matrix diseases, i.e. things like Ehlers-Danlos syndrome, Marfan Syndrome etc. JHS is probably one or several of those, but it's a nonspecific descriptive term (as opposed to a precise diagnosis) so it could be something reasonably mild that responds well to muscle strengthening & proprioceptive exercises; or it could be really, really debilitating and have all sorts of other consequences beyond just the joints.

If you do get PGP/SPD (SPD is the old name for the same problem) people may tell you to visit an osteopath or a chiropractor. As what they do involves manipulating the joints, that may do more damage in your case - I'd say go to a good physio first. Hospital physios will have seen PGP (and JHS) many many many times before, and evidence suggests that what they can offer is actually useful!

Rosey135 Thu 07-Jul-16 09:50:46

Wow thanks for the response guys, I will tell my GP and midwife at my first appointment so they can keep it in mind and hopefully refer me to physio.

Have any of you done pregnancy pilates? Pilates helped me a lot before but I want to make sure the excersise are safe during pregnancy.

Jjspoon I'm in the March group with you so we can keep an eye on each other and any tips we find.

I've not heard of SPD before going to look it up now.

Thanks for the advice! I have a very physical job where I am on my feet up to 9hrs a day so I really hope I manage to keep it in check.

Good luck everyone, would be great to hear how labour goes for you all.

barabasiAlbert Thu 07-Jul-16 11:40:05

Physio yesterday cautioned me against doing full-on pilates. I'd probably talk both to a physio and to a pregnancy pilates instructor to work out what makes sense - a worthwhile pregnancy pilates instructor should know about PGP/SPD (and if they don't then that's a clue that they're not going to be watching out for your safety). I think the name "symphysis pubis dysfunction" was only changed to "pregnancy girdle pain" in the last 5-10 years, so a lot of people still know of it as SPD rather than PGP.

Physical job 9hrs a day on feet sounds really good in terms of fitness, which you definitely want to maintain, but it also sounds like you should talk to your GP about a physio referral, as at 20 weeks I have great difficulty walking after being on my feet for only about 4 hours. Am hoping that the belt and exercises will help!

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