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EDS/Hypermobility syndrome

(7 Posts)
chocoraisin Tue 16-May-17 10:56:05

Does anyone else have EDS or hypermobility causing them problems? I'm feeling a bit emotional today. I am 15 weeks pregnant. The PGP started at 9 weeks, now I'm on sticks/crutches to walk and have a serola belt. I thought I might hold it at bay... but my knees, ankles and wrists are all hurting like buggery today. Even on crutches/dual sticks walking is painful. My back is painful. I can't bend or lift or walk far, or drive. I have a 4yo and 6yo DS. We live on our own (DP works away) so I'm feeling a bit overwhelmed and scared tbh of the next 25+ weeks, and then the recovery with a newborn too.

I am looking for a bit of solidarity and perhaps some sensible advice too? Have been referred to pain clinic just waiting for the appointment.

MoonlightMojitos Tue 16-May-17 12:04:32

Sorry you're in pain sad. I do actually have hypermobility syndrome but I've been really lucky as it doesn't seem to have caused me any extra problems (I'm now 38 weeks) so that probably doesn't help you but I didn't want to read and run. I mostly suffer with it in my hips and was do worried but they haven't been any worse than pre pregnancy luckily. Hope you get some help at your appointment and maybe someone else can come along with more useful advice.

RobberBride Tue 16-May-17 12:58:32

I'm really sorry to hear that. Like Moonlight I'm also 38 weeks and by some miracle my hypermobility hasn't been seriously affected. Can you afford the time/money to see a private women's health physio? I did that really early on (about 9 weeks) and she gave me a routine I could do in the office or at home. As soon as the sickness abated I started a pg pilates class, again led by a women's health physio. Both of those things really helped me, but I'm aware that I'm not running round after other DC and that there's a certain element of luck to whether or not you get pgp. Also aware that I'm still working full time and so could afford physio and pilates.

I presume you're doing all of the other obvious things - using a body pillow to help support you in bed, sitting on a decent chair, switching position regularly, wearing supportive shoes, using a plastic bag to help you spin in and out of the car?

flowers for you.

scaredofthecity Tue 16-May-17 13:12:30

I suffered with this as and as rubbish as it sounds, you just have to try and do as little as possible. Definately no bending, unloading the dishwasher is the worst. I did find walking in water at the swimming pool helped a little.
It is horrendous but there is an end date in sight. I was offered an early induction due to my pain.
I wouldn't worry too much about the recovery as it'll probably be a lot better than your expecting. (I hobbled in to hospital on crutches and hobbled out without them)
Try not to be afraid of taking pain killers if you need them. There are exercises that can help when your muscles go into spasm . Baths are your friend!
Is there anybody who can come to stay every now and again to help and for company? Try and stay on top of your MH and don't be afraid to ask for help.
thinking of you flowers

NotMyPenguin Tue 16-May-17 13:39:20

I have hypermobility syndrome but have just been very very lucky in my pregnancies and it hasn't got bad until later (and then I developed bad SPD, but then so do people without hypermobility).

I did find that swimming was very good exercise and also being in the water was a good form of pain relief, both while pregnant and while giving birth.

AnUtterIdiot Tue 16-May-17 13:40:31

I don't have much advice, but my best friend has EDS and also ended up needing sticks during her pregnancy so you really aren't alone. I think it was when all the ligaments started softening. I know she spent a lot of time at the pain clinic! I hope they'll be able to do something for you flowers

chocoraisin Tue 16-May-17 15:05:45

thank you for all the replies, I really appreciate knowing I'm not on my own. I called work to ask my manager to let people I'm working with know I'm using walking sticks now and please not to make a big deal out of it, as I'm feeling really emotional.

I find it really, really intense every time I'm pregnant - the change is shocking. But my doctor is trying to link me with pain clinic, rheumatology etc and I do have a private physio. I just have to hang in there and try not to let it affect me too badly. saredofthecity yes baths are my new best friend!!

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