Comments on: Physio

By: Tara

Tara — Tue, 16 Dec 2008 02:46:52 +0000

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

By: Memarie Lane

Memarie Lane — Fri, 12 Dec 2008 16:53:03 +0000

I wonder how many performance contortionists have this problem? Memarie Lanes last blog post..The Living Room Yogi

By: Cat

Cat — Thu, 11 Dec 2008 21:05:15 +0000

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

By: Bendy Girl

Bendy Girl — Thu, 11 Dec 2008 13:35:17 +0000

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 http://www.hypermobility.org) 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

By: Trish

Trish — Thu, 11 Dec 2008 11:56:12 +0000

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

By: Mrs. C

Mrs. C — Thu, 11 Dec 2008 11:30:18 +0000

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.

By: Bugs Mom

Bugs Mom — Thu, 11 Dec 2008 04:00:39 +0000

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. 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 http://www.silverringsplint.com/ ) 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. http://www.ednf.org

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

By: Sarah

Sarah — Thu, 11 Dec 2008 01:30:47 +0000

A brilliant writer whom I have been reading for years has just discovered that she might have EDS. Check out her post http://everydaystranger.net/archives/279390.php
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..

By: Sharon

Sharon — Thu, 11 Dec 2008 01:29:08 +0000

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

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!

By: lceel

lceel — Thu, 11 Dec 2008 01:16:02 +0000

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