Anyone with Ehlers Danlos Syndrome, pleasse answer these questions...?

Question

Hey peeps! So, after many months of people calling me a hypochondriac and being crazy, I finally got a diagnosis. Turns out, my family doctor is also a geneticist. So, she read my 3 page list of symptoms, didn't disregard me as crazy, and started asking me all these questions. Like, do I have trouble starting my stream of urine? (sometimes), can I bend my thumb back to my wrist? Can I shake hands with myself behind my back? Do I have any stretch marks? Feel dizzy upon standing? (yes, yes, yes, and yes). My blood pressure kept getting lower, celiac levels and WBC count were slightly high, rotten egg burps/vomiting episodes/dizzy spells all my life.

Anyway, she said that it could all be related to EDS. My one symptom has me stumped though. My clothes keep getting looser. But the scale says I haven't lost any weight. It's not dramatically looser, but loose enough where you can kind of see the difference. So, I was reading about adipose tissue which is body fat right?

Additional Details

Well, if you have a connective tissue disorder like EDS, can't it damage your adipose tissue causing your body fat or whatever to become lesser? I know, it sounds crazy, and I don't even know if I'm making sense right now, but I thought about that. Also, for anyone living with EDS, what has your life been like living with it? Is it really horrible? My doctor said I have the classical type. I didn't have a skin biopsy done to see if I have the vascular type, but she's a geneticist and she works with people all the time who have tissue disorders. I'm guessing she would be able to tell which one I had for sure since she probably see's people with the vascular type. She also wants me to have an x-ray done of my cervical, thoracic, and lumbar spine because she suspects degenerative disc disease. She also wants me to have a gastric emptying scan done to see if I have gastroparesis (the rotten egg burps and vomiting episodes. I've gotten these my whole life). And she also thinks I should go b

back to see my gastroenterologist to get an endoscopy done to rule out celiac since my levels were a little high. I was supposed to have one done before, But I'm very paranoid about the tools not being sterilized and catching a disease from it. I just turned 20, and this is a lot to take in all at once. I feel so confused and stressed right now. I guess cause I know I finally have a diagnosis and I know that I just have to have a few more tests done, and maybe I can finally get on with my life, ya know?

Sorry this was so long. Thanks for listening =)

Answer 1

Best Answer - Chosen by Asker

I have Hypermobility Syndrome (HMS), which is related to EDS & has pretty much the same symptoms.
They are both more common in Endomorphic people (tall & thin) & I have huge trouble retaining weight - so, yes i believe it does affect body fat.
I eat a diet that is quite high in carbohydrates & proteins & find that this helps.
I also avoid wheat products, especially bread & pasta, as I have found these to be highly inflammatory to my spine & joints (though this may just be me!).
Also acidic foods such as citrus & tomatoes, and anything that is mucus-forming (dairy, yeast, soya) can have very detremental effects on the irritable bowel, though if you are Coeliac, then you also need to avoid ALL gluten products (wheat, barley, oats, etc).
Like yourself (& many other sufferers) I have had years of misdiagnoses & bad attitudes from doctors, they have rarely taken me seriously, have twice disbarred me from their surgeries (when I challenged them on my condition), and one of them refused to prescribe me the painkillers that I need to stay mobile & pain-free, for a year & a half (because he thought I was addicted).
I think the biggest reason for this is the phenomenon of "pain of unknown origin" - if the doctor can't see what's causing the pain, through examination or x-ray, they believe that there isn't a problem & that we are hypochondriacs. The fact is that "pain of unknown origin" is one of the symptoms of EDS/HMS
Just keep affirming to yourself that YOU know your body & your symptoms better than anyone.
And if you haven't already, check out the Hypermobility website (www.hypermobility.org) they have some great info & tips.
I'm still actually not officially diagnosed with HMS, due to doctors oversights, but should have this rectified by the end of next month when I see a specialist under Dr Gordon (top specialist in UK) at UCH in London.
Hopefully then I can move forward (no pun intended!).
I wish you all the very best in your quest for health & medical satisfaction.
Sorry, my answer was even longer than your question!!! ;-)

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Asker's Comment:

Thanks so much! Hope you feel better too =)

Answer 2

This site will give you very useful and thorough information-
http://www.emedicine.com/derm/topic696.h…
Good luck!