EDS related?
Posted: 23 November 2013 08:38 PM   [ Ignore ]  
Total Posts:  3
Joined  2013-11-23


I am 17 years old and I was diagnosed with Ehlers-Danlos Syndrome type 3 these year in September. The doctor just look and me touch my skin and i needed to show him what i can do and that is it no outer tests.

If I really have EDS is there a possibility that I have some outer problems too?
I have a lot of stomach pain lately and i always had it… it feels like my stomach is burning and i can feel that burning pain all the way down till i don’t go on a wc and my stomach burns in the morning to. Could that be related to EDS?

And I have really strange heart beat. I mean I can sit and do nothing and suddenly my heart would start beating really fast i can feel it in my chest and it is a little bit painful i mean i can feel a pressure. I told my Dr. about it and she looked at me and check my heart beat and than she said she need to do some blood test in case if it is something wrong with my thyroid. but we never did blood test. Could that be related to EDS?

Sometimes i feel really dizzy when i close my eyes… but i thought these is normal till i read comments on FB about POTS. Could that be it or it is just normal thing?

I usually have really low blood pressure.. and i am always really cold.. even at summer… is that just my thing or is that related… i always thought it is because of my anorexia… but now i eat normal since September and i have a bit higher than i used to have but it is still 100/50… i used to have it 80/50….

And my family was always very poor. i mean now we are fine but my dad was really poor when he was young and there was a lot of work to do and no one was diagnosed with EDS. My dad is 60 years old and he was really stretchy as young and he still has really soft and stretchy skin. has joints tighten up and he is not that stretchy. But he had pain in his wrist and back when he was young. and my grand dad had the same symptom’s as my dad. I don’t know for any outer siblings to have it. we don’t see each outer. And i have a sister that is perfectly fine.

i really am despread to hear some answers.. If i ask my personal doctor.. well she says she don’t know… for sure is hard to know every damn syndrome but it is harder for me.. i can’t ask her anything.. and that dr. who diagnosed me just said if i have dislocation i need to come back so they give me an operation…

i post that on POST cause i didn’t know how it works…

Posted: 02 December 2013 09:48 PM   [ Ignore ]   [ # 1 ]  
Total Posts:  8
Joined  2013-10-28

I think the heartbeat issue is related to having such low blood pressure and your heart having to work significantly harder to pump blood through your body. Are you anemic?

The burning in your stomach sounds reminiscent of ulcers. I’m hardly an expert ( I don’t even have EDS, but I’m taking care of someone who has it). Perhaps try removing gluten, dairy, soy, eggs from your diet. Do this for at least a month.
Try eating these:
leafy vegetables

If you get nausea, try limiting your fat intake. If it helps, continue eating low fat. Otherwise, continue eating fat as it can be easy on the body (especially medium chain fatty acids like those in coconut oil).
Do you poop regularly? How frequently do you poop? It seems like an awkward question, but it helps in determining how quickly your stomach is processing food. Gastroparesis is not uncommon in those with EDS.
How frequently do you pee? Another awkward question, but if you pee a lot, your body is losing vital salt that it needs to help maintain blood pressure.

My guy (with EDS-hypermobility) has a fast heart rate and chest pain, much like you describe. We haven’t yet been able to attribute it to anything other than his POTS. You most likely have POTS. Dr. Diana mentioned a combination of zyrtec and zantac in dealing with POTS. Staying hydrated and eating salt helps with the blood pressure, since salt helps the body retain water and thus increases blood pressure.

Be very careful about operations. People with EDS often have a lot of complications with operations. Try to explore every possible option before an operation.

Welcome to the terrifying world of EDS, were you must learn everything you can about your illness, because most doctors won’t know anything. That being said, the internet is an amazing tool. Make use of Dr. Diana’s posts and the discussions on Inspire.

Posted: 13 December 2013 03:58 PM   [ Ignore ]   [ # 2 ]  
Total Posts:  6
Joined  2013-11-25

Welcome to EDS, Malapupa - it’s actually great to hear from someone diagnosed at your age, it means you’ve got at least one doctor who thinks outside the box and connected the dots for you. I agree with everything that the other member ‘Eliza and Jordan’ posted in her reply to you, and your experience mimics mine when I was your age, but I wasn’t diagnosed until I was 37, and I’m hypermobile EDS and POTS. I was fainting a lot in my teens, it got pushed off as attention-seeking-faking fainting, pretty disheartening. You may go through periods of time when POTS symptoms get bad and then better, ups and downs. Your symptoms sound very POTS-ish, talk to your doc about having a tilt table test so you can try some meds for POTS. It sure beats having ‘accidental-naps’ under your coffee table because you stood up too fast.

PS: You will be teaching doctors about EDS for the rest of your life, learn everything you can about EDS, POTS, etc. You will have to really bully some doctors sometimes, get good at advocating for yourself, speak up and get heard. Best of luck.

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