by Veronica on December 10, 2008

in Ehlers Danlos Syndrome, My body is broken., Pregnant. Finally.

Right, so Monday I had an appointment first with my midwife and then later that afternoon, with a physiotherapist specialising in pregnancy.

The baby is fine, still measuring quite small, but the midwife is confident that he is healthy, just a little below average. Honestly, as the person who is intending on pushing this baby out through my vagina, smaller than average suits me fine. Amy was ‘smaller than average’ and yet she was a completely healthy weight. I have been told not to expect a baby any bigger than Amy and really, I can deal with that. Healthy is all I care about.

Plus, I have enough clothes in the teeny sizes to not really want a huge baby.

The physio was … interesting. It was meant to be a class, only the other girl booked didn’t show up.

According to the physio, all my pelvic and hip pain stems from the fact that the right side of my pelvis has twisted anterior, while the left side of my pelvis is normal. She realigned my pelvis and then gave me a sex-ay pelvic brace to wear to keep everything in position.


We talked a little about my CFS and the condition of my muscles and joints which are in her words ‘the worst muscles and joints I have ever felt’. Apparently all my joints and the muscles/ligaments holding them together are very weak and not in great condition.

Even better? She doesn’t think that any of this is related to my pregnancy at all, she feels that it is all related to my “CFS” and has been aggravated by my pregnancy.

My CFS was never ‘formally’ diagnosed. It was what my GP told me I had after 2 years of tests and bloods showed nothing conclusive. It was what everything boiled down to when I was still sick and nothing could be found.

I got put in the ‘too hard’ basket.

Chronic Fatigue Syndrome though, generally has disappeared between 2-5 years after the onset. This February I will have been sick for 7 years without any change.

A while ago when Mum blogged about everything, Bendy Girl emailed Mum to ask if I had ever been tested for Ehlers Danlos Syndrome [I hadn’t] because my symptoms sounded very similar to EDS. We never thought that much about it because my joint pain and other issues were always talked about as secondary to my fatigue and nausea.

However, with the Physio having said what she did, it brought EDS back into something that may be a possibility.

I went and did some research into the symptoms of EDS and wouldn’t you believe it, I agree with just about every symptom.

  • skin that bruises or tears easily? Check [I permananently look like Nathan is beating me in my sleep]
  • wounds take a long time to heal? Check – [We won’t talk about the fact that it took me 12 months to heal from the episiotomy I got when Amy was born or that I have to take lots of Vitamin C in order to get anything to heal properly at all]
  • stretchy rubber band like skin? Check [You should see the skin on the back of my hands and elbows stretch. I just thought I was weird!]
  • loose unstable joints causing frequent dislocations [My knees both have dislocated, my left knee spends all it’s time threatening to and my elbows always want to pop out as well]
  • joint problems and pain [Aleve anti-inflammatories used to be my friend, until I got pregnant and couldn’t take them any more.]
  • double jointedness [my wrists, ankles, fingers, shoulders and hips all bend in ways other peoples don’t]

I can do this with my wrist

And this is my foot when I sit on the floor with my legs extended and foot relaxed.

Yes, I curled my toes up, it’s cold here today and I had to take my socks off to photograph. Heh.

I can also do this, but I can’t photograph while I do it, so I stole this photo from Bendy’s site.

At this stage, I’m still speculating and worrying, but coupled with everything else, it seems like it could be a possibility, especially as almost every photo I have seen of EDS causes me to say ‘but I can do that too’.

So, I’m off to my GP Friday to see what he has to say and to get a referral to a specialist who knows about these kind of disorders.

And frankly? The whole thing scares me.

Bobbi December 10, 2008 at 12:34 pm

ICK!! Don’t EVER show photos like that again!

Glad to hear all is well with the baby though!

Bobbis last blog post..A Little Cyber Spying Never Hurt Anyone

Dina December 10, 2008 at 12:42 pm

Interesting… And yeah. Scary. It seems from what I read–the prognosis for most types isn’t too bad. Hopefully, if you have it, you’ll have one of the less scary versions.

I have weird symptoms. I search the web looking for answers and never find anything. I think in some ways, I might feel relieved if I found someone who had the same symptoms. Maybe I’d feel less weird. Or maybe I’d feel more weird–having a name for it. Labels can be reassuring sometimes, but they can also be depressing and terrifying.

Dinas last blog post..Kim Beazley

Bettina December 10, 2008 at 12:45 pm

I know that pain all too well. The left side of my pelvis twists out of alignment and locks up. Makes walking very painful. The brace is gorgeous isn’t it? lol

Take it easy darl. Especially the next couple of days. It’s really easy to throw back out of alignment that couple of days after having it put back into alignment.

Glad everything with bub is ok.

I really hope you get some answers on the other ESD/CF stuff soon.

Bettinas last blog post..O Holy Night of Jingle Bombs

Megan December 10, 2008 at 1:25 pm

glad to hear everything with the baby is good, and hope you find the answers about yourself soon.

Megans last blog post..It got Cold

Mrs. C December 10, 2008 at 1:29 pm

I’ve never heard of this problem before!! I sure hope you find the answers you need and the rest of the pregnancy goes VERY smoothly!!!

Mrs. Cs last blog post..Opinion?

Cri December 10, 2008 at 1:47 pm

i know a woman with EDS and i think something about it is genetic, because she had her children tested for it and her daughter has it as well. now, i am totally 100 percent NOT knowledgable about this condition. you should get tested for it though, because you do have many of the same issues she has. for her pregnancies she had to wear a sort of tension bandage support thing for her stomach because her joints and ligaments are to bendy to properly support her on their own.

Taz December 10, 2008 at 2:16 pm

good luck hun..

will be thinking of you..

hoping that they can find answers..

good to hear the little boy is healthy.. πŸ™‚

Katie Ann December 10, 2008 at 2:50 pm

I can do the same with my wrist, and also with my arms how Bendy has them (which I can do really easily and makes me wonder if I’m missing something from the photo). But then I googled it and the stretchy skin stuff just made my jaw drop. It must be at least a little reassuring to finally have a direction to go in to figure this out, even if it is scary.

Katie Ann December 10, 2008 at 2:59 pm

Um, wow, and this site says it’s a great and natural way to get rid of stretchmarks…

Ali December 10, 2008 at 3:54 pm

Wow. I’d never heard of this before. Hope you’re able to get some good help with referrals etc from your GP.

Being all bendy is a pain sometimes. I also have hypermobile joints etc, hence my own pelvis issues(and a variety of other annoying stuff!).

Alis last blog post..Moody (almost) teenagers and clumsy mishaps

river December 10, 2008 at 7:32 pm

This is another thing I’ve never heard of, I’ll be clicking on your link later to find out more about it. Geez, the things you learn when reading blogs! I have my own annoying hip and back pains which I’ve been attributing to the strain on my joints from the excess weight I’m carrying, (I eat too much), but you’ve got me thinking about alignments and such. I think I’d better be making appointments with a chiropractor just to make sure I haven’t misaligned something by all the heavy groceries I lift on a daily basis. So, thanks for nudging me to get off my arse.
I’m very glad to hear the baby is healthy and I totally agree that small baby births are the easiest. None of mine were large, the biggest wasn’t even 7 pounds.

badness jones December 10, 2008 at 11:42 pm

Hugs hon, I don’t know anything about that condition, but I’m going to go read up on it later. I’m sure it is scary, but I think knowing is usually better. And I’m glad that the baby is healthy and well.

xo Sarah

badness joness last blog post..Things I never thought I’d say…

nikki December 11, 2008 at 12:41 am

I hope you can find the answers you are looking for.Not knowing what is going on is sometimes the worse than the diagnosis. Glad to hear Mr. Baby is doing very, very well.

nikkis last blog post..On being a step parent

Jenni December 11, 2008 at 12:41 am

I actaully just watched a show about EDS, and that is scary stuff. But, on the positive side, at least she is taking your symptoms seriously and trying to help you get an accurate diagnosis (any diagnoisis, really.) good luck!

Jennis last blog post..Second Time Around

Marie December 11, 2008 at 1:36 am

Yikes. Those are some weird pictures man. You’re like Gumby. Not to make light of a serious situation, but wow.

I went to the link you provided about EDS. It does sound possible doesn’t it? πŸ™ So sorry. I can’t imagine living in pain like that all the time. I hope the docs are able to finally figure out what’s going on.

Hang in there. We’re thinking about you!

Ree December 11, 2008 at 1:46 am

Shortman can do that bendy thing with his shoulder. Shudder.

Rees last blog post..The Time I Almost…

Xbox4NappyRash December 11, 2008 at 5:23 am

Jesus, best of luck with that.

Hopefully it’s just you actually being a bit weird!

Xbox4NappyRashs last blog post..It walks like a duck, and talks like a duck, but…

Toni December 11, 2008 at 5:29 am

How interesting. I know you must be happy in some sort of respect because you might actually have an answer – even if it’s not the easiest of answers.

I’m going to think good thoughts for you. πŸ™‚

Tonis last blog post..No Change

julie December 11, 2008 at 5:44 am

It will be better to have an actual diagnosis, if it is EDS, and if it is not, then you can stop thinking about it. If it is, at least the doctors will have a starting place and ideas and plans for treatment and care, hopefully.

I had Crohn’s disease for a really long time before being diagnosed. Once I was diagnosed, I started on a drug that has made a very big difference for me, and while I still hate the idea of being a person with a disease, it helps to know that if I am feeling shitty, it is the disease and not anything I did or didn’t do (I tend too much to think that it is my fault if I feel lousy, like that I ate the wrong stuff or that I didn’t get enough sleep or exercise or whatever. It’s a bad habit I have.)

Hyphen Mama December 11, 2008 at 6:42 am

I wonder how many of us tried to do “that” with our wrists after seeing the picture! Knowledge is power and it’s really hard to get a lot of knowledge when you’re in a rural community (I had to go to the Big City to get a diagnosis for my autoimmune disorder), thank heavens for the Internet. I hope you get a proper diagnosis and a treatment plan that works.

I’m just so glad little baby is healthy!

Hyphen Mamas last blog post..Dear Mr Hyphen, Yer Gonna Laugh. Someday.

Just a mom December 11, 2008 at 8:04 am

ok can I jsut say,,,, after years of my illness it was such a great feeling to JUST KNOW WHAT THE HELL IT IS,,, and then they can treat it. Not that I have anything like you do but anyway,,, it will be nice to know. hang in there and keep your legs crossed.

Tanya December 11, 2008 at 11:36 am

My ex had EDS and it ran in his family. They were fairly normal, except loved computer games because that didnt require them to physically strain themselves or dislocate anything. My ex had a knee that dislocated so much that it eventually wore all the ligaments and that fluid stuff between the joints so he always had a swollen knee and couldnt run. He limped a lot. So that left me to do everything, mowing lawns, housework, walking the dog etc.

So you may turn into a computer nerd.

Just be careful that you arent diagnosed with the wrong thing. When I was younger (like 17) I was diagnosed with vaginismus when really I just had thrush which made things a little painful. Theres a huge difference there and after going to see a second doctor then I was given the right treatment.

lceel December 11, 2008 at 12:16 pm

SWMBO has EDS, as well. It is apparent to me, given that a couple of Annie’s sisters also have EDS, that there are varying degrees of EDS – its manifestation is not consistent from case to case. But in all cases it is a pain to deal with – literally and figuratively.

I am so sorry to think you may be a victim of EDS. I know what Annie goes through – I know what Bendy Girl goes through, as well. Bendy’s case is much worse than Annie’s. And probably much worse than yours, as well. But in any case – it’s a bitch to deal with and there is no cure. At least, not yet. Personally, I think the answer to EDS will come from gene therapy, but that’s a ways away yet.

lceels last blog post..Once Again, Wordy Wednesday

Sharon December 11, 2008 at 12:29 pm

It must be a relief to know baby is doing well even though a tad small – like you I see that as a bit of a positive πŸ˜‰

I suspect CFS has been a convenient handle to hang your symptoms on but has probably outlived it’s sell by date now. Whether EDS is the true answer or not I think it’s time for a few more investigations although waiting until baby is born is probably going to be compulsory.

Just remember, whatever IT is, you are one tough woman!

Sarah December 11, 2008 at 12:30 pm

A brilliant writer whom I have been reading for years has just discovered that she might have EDS. Check out her post
Helen is inspirational and has been doing lots of research which might help you in your quest to figure out a diagnosis. Its tough facing this kind of disease but as someone mentioned further up, sometimes a diagnosis is a relief and its a place to start from.

Sarahs last blog post..

Bugs Mom December 11, 2008 at 3:00 pm

I just wanted to let you know that if you are looking to find out if you have Ehlers-Danlos Syndrome you should be seeking a geneticist. If you can find one who specializes in connective tissue that is even better, but they aren’t that common. πŸ™‚ They will know how to properly diagnose you, since only two types of the six forms of EDS have lab tests it’s important to see a Dr. who really knows the condition.

The good news is that once you know what you are dealing with you can have educate yourself as well as find more support! While there isn’t a cure there are ways to help with loose joints and dislocations. There are splints (even for fingers, check out ) physical therapy, and other modifications you can make in your life that will help.

My daughter was diagnosed at age 5 with Ehlers-Danlos Syndrome, suspected hypermobile or classical type. It has been a journey since then, but we have learned to adjust. I am just SO thankful that we did find out early so we can try to prevent some of the wear and tear on her joints from higher contact activities. Most people do not find out until they’ve already damaged their bodies.

Good luck to you! If you are seeking more information go to the Ehlers-Danlos National Foundations website. Register for free and you can view pretty much anything you’d need to educate yourself.

Bugs Moms last blog post..Our Staffing is Coming Up…

Mrs. C December 11, 2008 at 10:30 pm

You’ve updated but didn’t include a pic of the sex-ay brace? Um, or is the brace “internal”?

OK, not asking. But sorry things are going badly.

Mrs. Cs last blog post..The Secret Santa.

Trish December 11, 2008 at 10:56 pm

Firstly so glad to hear baby is well. Baby knows you don’t want no episiotomy maybe …I love it you can always keep your humour.

I just read your Mum’s post. I hope it all goes well and you get answers – no matter what – remember like Sharon said , whatever IT is, you are one tough woman and an inspiration to many !

Having any long and debilitating illness is tough let alone a genetic one – that throws a lot more crap at you.

I want to see your brace too – I had one now gathering dust on the shelf.

Trishs last blog post..Marmite & Tea anyone

Bendy Girl December 12, 2008 at 12:35 am

Hi Veronica. I hope things are feeling a bit more settled now, it’s very frightening when you first realise you may have a certain condition.
To offer some reassurance, most people with EDS live normal lives, even more so for those with HMS (try the medical info at Only a very few of us are as severely affected as myself or MsOrdinaree (link on my blog). I actually only know of one or two others with such severe symptoms its usually much milder.
However because of the role the female hormones play, women tend to be more affected and especially so at puberty, during and after pregnancy and menopause.
In the UK the specialist you’d need to see would be a rheumatologist. I understand that it’s often geneticists in the USA but as far as I’m aware the correct speciality for Australia is still rheumatology. Unfortunately not all rheumatologists are as up to date on EDS or HMS as they should be, so I’d recommend asking around on some of the EDS or HMS support sites to see if anyone has any suggestions for who to see.
I hope you find some answers soon because the most important thing anyone with EDS or HMS can do is to educate themselves about the condition, learn how to self manage and try to live as normal a life as possible. From my perspective the pain becomes easier to deal with once you understand it’s cause but the fatigue doesn’t tend to be as easy to deal with. CF is simply considered as part of the overall condition and doesn’t particularly merit a diagnosis in it’s own right if there is already a diagnosis of EDS or HMS.
I hope that helps, and that this issue is settled one way or the other soon. Please let me know how you get on with the doctors. Good Luck, BG x x x

Cat December 12, 2008 at 8:05 am

Geeze woman, that’s a lot of years to be sick and not know what it is. Keep us posted. I’d be so happy if they could just diagnose and treat you, find something that helps!

Cats last blog post..Guess What? Answer

Memarie Lane December 13, 2008 at 3:53 am

I wonder how many performance contortionists have this problem?

Memarie Lanes last blog post..The Living Room Yogi

Tara December 16, 2008 at 1:46 pm

Oh Veronica! You are in my thoughts! What a time to have to deal with this – with the holidays and the baby coming… xoxo

Taras last blog post..The new toy

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