Joint hypermobility disorders :

Tummy troubles anyone? - - Posted by rhea (rhea), 1 May 2003

Hi my odd bod pals...  I hope you're all as well as your body permits and enjoying some nice spring weather...lol and I hope our Auzzie friends are having some nice Fall weather.  

Well as you've probably guessed from the title my stomach has been going nuts...  After years of trials of over 1/2 a dozen NSAIDs my stomach has had the biscuit.  It's always been somewhat sensitive, but its at a whole new bothersome extreme now.  Every night I take pantoloc (a GERD medicine I think) and than two hours after that I take rolaids, or gaviscon (anti acid chewable things)  and sometimes that will be good enough to take me through the night, but about 3 or so times a week I'll still wake up on the verge of throwing up and will have to take more pantoloc and sit up for 1/2 an hour before the nausea has lessened to the point that I am able to sleep.  Needless to say this is very distressing, especially when sleep is so hard to come by with this joints screaming in every sleep position to finally get to sleep and than be woken up by my bloody stomach is really unpleasant.  What accompanies the nausea is a mild burning feeling and a bit of mild belching. (I know, isn't that lovely.)  Meats and any fatty fast foods exacerbate the whole situation.  I know it sounds like I probably have GERD or something similar, but I am just so overwhelmed with all of my other health problems I just can't bear to confront another issue and go through another battery of tests for another deffective body part, especially when my tests always come back normal.  

So are tummy problems related with HMS/EDS III?  Please don't tell me that the darn stomach is also composed of collagen...    

Thanks so much for any help, and some suggestions on how to manage this!

(((Hugs)))

rhea  
Posted by Shazinoz (Shazinoz), 2 May 2003

Sorry Rhea, but YES your tummy is collagen TOO. GERD and IBS and Reflux and such are VERY VERY VERY common in EDSIII (now called HEDS). Here is a link to gastrointestinal issues in EDS
http://www.ceda.ca/prev.htm and somewhere I think I have another link (I will look for it and post it when I find it.
I too suffer from IBS and also some parts of GERD and have the neusea sp? etc that our meds can cause as well.
Sharon
Posted by SL99 (SL99), 2 May 2003

Hi Rhea,

Yeah, I'm afriad that gastric and disgestive troubles can be linked with the HMS/connective tissue disorders like Shaz says. And of course all the drugs they pile into us, especially the anti inlflammatories only makes the problems worse too...typical.  

I have gastric irritation and an ulcer now from 20 years of taking various versions os NSAID's. I'm sorry that you are having similar problems and having to take more medication to try and quell the problems. You might want to mention Lansprazole (Zoton) to your doctor when you see him, as I was taking the same kind of things you are now without too much effect, but these Zoton capsules are providing a lot more releive for me. Just thought it might be something that you could look into as well Darl.

I hope that you can get it too settle Sweetie, as I know only too well that you have enough to contend with alreday without this stuff on top. Take care and remember I'm here when you need me.

Thinking of you and senidng a big hug.  

Love....Jo
xxx
Posted by rhea (rhea), 4 May 2003

Hi Jo and Sharon!

HMPH!  I should have known....bloody collagen!  Thank you Jo for the meds suggestion.  I'm trying all non med solutions right now because I really hate seeing my GP and dread being sent for more tests...  But I have written down the name of that med so if I need something more despite my conservative efforts I will ask my GP about it.  Thanks for that tip hun!  

Thanks Sharon for the wonderful CEDA link!  That is actually exactly the type of information I've been looking for a while for!  I did more research on both GERD and IBS and I think I've got both too, but at this point am not willing to go through the mill with my GP about it all.  But I am taking all of the suggestions about those things and am eliminating the stuff that makes it worse etc...

Thanks so much gals!  You two are really amazing friends, and I can't tell you how happy I am to have found you!  

Big *careful* odd bod (((hugs))),

-rhea
Posted by Iona_-Uk (Iona), 4 May 2003

Hi Rhea

Just to let you know that because of all the meds they pumped my full I have chronic stomach & intestinal problems.

BUT chinese & herbal medicnes are fantastic and i would highly recommend speaking to a homeopath.

Take care
Iona
Posted by rhea (rhea), 4 May 2003

Thanks for your suggestion Iona.  I do have a pretty good naturopath that I guess I could ring up!  I'd certainly be more willing to see her than my GP.  Knock on wood, the past few days have been all right now that I've been staying away from fatty foods, meat, and citrus.  They are def. major triggers for me.  And liquid Gaviscon seems to be even more effective and gets me through the night if I take it at bedtime.  Fingers crossed!

(((hugs)))

rhea  
Posted by Iona_-Uk (Iona), 4 May 2003

Rhea

Do you get Gaviscon advance in Canada? Thats what I tend to use & it's a lot better than the aniseed liquid or the funny tasting tablets.

Iona
Posted by Lizzie (Lizzie - UK), 9 May 2003

Hi y'all

I am getting close to my limit of being positive.  If it is not the pain that I am in with both knees, back, right shoulder, wrist and thumb then I'm constantly having to go to the toilet with stomach problems - need I have to say more.

I've been prescribed with Lansaprazole because I too would wake up gagging gasping for breath and actually being physically sick before I could get my breath back, which is extremely frightening when you wake from a deep sleep and there is no-one around to help you and as it is in the middle of the night or early hours of the morning I feel guilty calling anyone.  The drug was working really well, but the side affects are oedema and diarrhoea etc which I am getting - so I was given another medication similar to it, but it didn't work!

I was then prescribed Celebrex 200 mg but I had side affects with it and was taken down to 100 mg but it just doesn't do any good.

What can I do - is this all to do with HMS?  If so, I don't want it - no siree thank you LOL

It is really pi$$ing me off - excuse my language but I need to express how I really feel and that's how it's making me feel.

What else does this dreaded ailment want to add to my physical abilities?


Posted by Liz (Liz), 13 May 2003

Hi Rhea.. I too have stomach problems, and I had a feeling it was related to EDS.  I've had heartburn for years.. I did all the usual things (stopped eating after 7, cut back on spicy foods, etc), but it wasn't really helping.  I'm on Prevacid now and it really does the job.  If I skip a day, the heartburn is back instantly.

I've also been going to the doctor for pain in my stomach that happens mostly in the morning, but sometimes during the day, associated with nausea.  They have done an upper GI, ultrasound, and h.pylori tests.. the h.pylori was a little elevated but not by much.  I'm pretty sure the pain is associated with heavy meals (meat, fats, etc), and I've been on a diet of veggies and soups for a month now.  It's helped the pain but the nausea is still around.  Doc wants me to go to a gastroenterologist, but ugh... I'm so sick of doctors I just want to scream.  Every test comes back normal, and my pocketbook gets a little thinner.  

But anyways.. yeah, Prevacid really helped my heartburn.  Now if I can get the nausea under control I'll be in decent shape.  

Liz

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