By Frustrated old me on Friday, January 31, 2003 - 04:08 am:

Could my stomach problems have to do with HMS/EDS as well? For no obvious reason my food and my gastric acid seem to move upwards rather than downwards. I belch all day. Some days it is so bad everytime I belch some 'late-food' comes out of my mouth, or, on less fortunate occasions, out of my nose. Bending over has the same effect on those days.
I tried medication to reduce the production of gastric acid, but that just means the food comes back a little less sour. Which is kind of nice...

What should I do?

If I get tested on some 'regular' causes no doubt none of those will be found. It will be 'just something that has to do with the weakness of your connective tissue'. For which of course there is no cure nor relief, which most doctors hate even more that I do.
The same thing happened with my gynaecological problems (I have been having a continuous period for a couple of years now, it just never stops). I've had it all checked out. No cervical cancer, no endometriosis, no cystes on my ovaries. (Don't get me wrong, I am glad to know I don't have any of those) So it must be the 'bloody' connective tissue again. 'Sorry, no cure no relief.'
I am not even officially EDS, I am supposed to be HMS, It should not affect anything but my joints, I'd appreciate it if my body would just stick to the diagnosis!

Anyway, I am afraid that after they have run every test in the book on my stomach the conclusion will be 'sorry, must be the connective tissue, no cure no relief'. Problem is that most doctors can't stand patients they can't cure. If you can't be diagnosed and cured by the stuff they learned in medschool, but you are not dying either, you irritate them, you don't play the game according to the rules. They would very much appreciate it if you would just get lost and never confront them with their inabillity to help you again.

Well I am lost here. Does anyone else have a troublesome stomach (or period for that matter), which was (pobably rightfully) blamed on the EDS? What did you do to find some relief?

I am not worried I might have something serious, I am afraid that it is 'just the EDS'. Maybe I was wrong, maybe I hate it even more than the doctors do.

I am so tired of recovering from several things at a time and before I have fully recovered suffering from a dozen other thing all over again. It's just a sprained wrist, it's just stomachache, it's just a dislocated hip, it's just an overuse-injury, it's just a period but it never ends!

Well, it might be time to consult a psychologist again...

By az on Friday, January 31, 2003 - 11:29 pm:

Frustrating isnt it? I keep asking to be taken to the vets, after all they shoot lame horses HMS and EDS are all connective tissue problems just to differing degrees. Your joints are more than likely normal its just the tissue/muscles/tendons around them that are damaged. Unforynatley for us all of our body is glued together with collagen and this is what seems to be faulty in HMS,EDS and Marfan diagnosed people. So your intestines are more than likely to be to stretchy as well and will not be able to cope with food properley. As an IBS sufferer myself although I havent been cured the way I have eased the pain and sickness is by only eating little and often. The other thing you could try is a pro biotic yogurt the natural bacteria helps netralise (SP) the bad bacteria in your gut. As for your continual period are you able to take hormone contraception? you can take these continually for months without having a break and will have no bad effects from doing so. Even though you have been given the all clear ofit been anything nasty, bleeding that much all the time is going to make you anemic and the last thing you need is to be even more tired. Good luck
Az

By Frustrated old me on Sunday, February 02, 2003 - 07:29 am:

Thanks for the tips Az.
Hormone contraception won't help. I actually stopped taking them because I was having this continuous period while using them. Obviously it didn't help. I think by now I have been on every hormone in the book. All they did was give me lots of acne, help me gain weight and I think I might be growing a tiny moustache :-)

By bree on Sunday, February 02, 2003 - 09:41 pm:

I've got similar symptoms, but to a lesser degree (i.e. some nausea and reflux, somewhat unpredictable periods, and I actually do get ovarian cysts that burst), and I'm also supposed to be HMS not EDS. The worst thing is when the docs don't want to know about 'peripheral symptoms'. Your situation sounds pretty unliveable, though - Az is right about it making you even more tired, and besides that you must be spending a fortune on antacids and tampons!!! Is it your GP you're talking to about these things, or is there a specialist you could talk to? I sure know that feeling of 'if I only had one thing less to cope with...', and how much it can get you down when none of the docs seem to get it.

By Frustrated old me on Wednesday, February 05, 2003 - 02:23 am:

Thanks Bree, You know, I am actually considering to try to get a taxdeduction for all the tampons as 'extra medical costs'... Probably won't work.