Gastro disorders & Hypermobility syndrome?

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Hi all,

I was diagnosed with JHS just over a year ago (after years of trying to convince GPs that I was in pain and needed help).

2 weeks ago I suddenly developed constant nausea, bloating after eating and abdominal cramps. Now I am retching too and I don't feel like eating much. I've read that JHS can cause dysfunction of muscles of the gastrointestinal tract leading to development of GORD/gastroparesis.

Has anyone else experienced this?

Am currently waiting for a GP appointment (>3weeks) ...considering a private GP at this rate...

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5 Replies

  • Posted

    There is a link with Erhlers Danlos syndrome which causes these symptoms .  It is caused by a break down of connective tissue such as collagen

     

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  • Posted

    Sounds like gastroparesis. Get a stomach emptying test. That will determine if you do or don't have this. i have this and your symptoms sound like what I fight daily. Stay away from fat, eat several small meals a day and drink Ensure with almond milk and low fat ice cream if you can't eat solid food. I find these milkshakes very soothing. You need Zophran or Phenegren for nausea. If the nausea is not too bad ginger is good. Keep reading the posts under Gastroparesis, and you will learn a lot to help you. I have learned so much that has helped me deal with this condition. Get a Good gastrenterologist that will listen to you. GPs don't know much about it.

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  • Posted

    Yes,

    it doesn't matter, if it was hEDS or JHS, (EDS classification changed this year, much stricter),

    both have the same multiform manifestation spectrum possibility and it sucks greatly, if the non working connective tissue effects the GI tract.

    My daughter is in it now for 2 years with hardly any help, 

    once you have a gastric emptying study or a GI transit study, what do you do from there?

    (My little Ms 15 is delayed, well delayed and can only keep  liquids down)

    You will have to go through the basic mill first

    with scopes and labs and breath tests (for fructose, lactose, sorbitol malabsorption or SBIO), biopsies, celiac exclusion, calprotectin and the likes.

    Maybe there is already an easy answer on the way!

    I wish it to you, because otherwise one is pretty stuffed.

    As my girl is not 18 yet, they even dwaddle around big times with even pain relief..... each day and night a nightmare.

    Nausea constantly, vomiting after mash, vomiting when reclyning or lying down anyway, cramping in one lower abdo spot, yet nothing of 20 different med trials helped, nothing of acupuncture helped, nothing of supplements from naturopath helped.

    We are trying to convince them, to look for MALS, SMAS and the likes, we probably have to travel around half the world to get to a doc, who does ultrasound himself and knows about compressions,

    it is very very hard once you are not an easy diagnostic person, to get them onto rare conditions, which might be still treatable even with hEDS or JHS. Also sometimes you get results but they are done half  heartedly and not correct. We have for example a higher velocity in celiac trunk (artery), big difference between exhalation and inhaltion, yet they dismiss it as not significant because just 30cm/sec  over highest limit and get no MRA or CTA....??

    Also sometimes one can have something not linked to existing diagnosis and get's symptoms too quickly put into that hEDS draw.

    Be prepared to fight.

    You need the basic tests first and maybe it is all just easily fixed with probiotics and a special diet.

    Best of luck!

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