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?
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 =)
This site will give you very useful and thorough information-
http://www.emedicine.com/derm/topic696.htm
Good luck!
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!!!
There is so much to know about EDS and so many differing symptoms it is amazing. The best and most up-to-date information I have found is at EDNF.org. Once a member, there is an amazing member message board which is kept private so your information is not available across the Internet – something I believe is very important. There are some great materials that can be found there that truly educated the medical professionals you see. They have helped me get much better treatment.
Best of all, there is going to be a fantastic conference in Baltimore, MD July 15 to 17. There will be clinics held there by some of the most amazingly learned docs in the field of EDS. The doctors will be doing presentations and it is amazing to learn the latest information from these professionals. And it is wonderful to be in a place where most everyone has EDS. It is a fantastic place to make friends and feel understood.
Best of luck to you.
Hi my son was diagnoses with hypermobility syndrome when he was7, he is now 9. I’m having a huge problem with him gaining wait. He is over 20lbs underweight and his gastro doc has been talking about a feeding tube. He eats but just does not gain the weight. I have an appointment with his doctor on the 16th of March and I am going to ask him about the adipose tissue. It has been hard because for the past year I he has dealt with vomitting, diarhea, that rotten egg smell, weightloss, dehydration because of all of this. I know what you are going through and I feel that the EDS website does give a lot of infornation
irritable bowel is quite annoying and you will really hate that disease.’:-