Hey everyone, So this may be a little long *sorry in advance*

So I was recently diagnosed with POTS/Dysautonomia. Since my idiot of a dr didnt give me any information on the disease I had to do all of my own research. She claimed that i must have had some sort of major infection that caused the POTS...well she is a dumb shit..ive never had a major infection ever. So i knew there had to be an underlying cause...hence I stumbled upon information saying that EDS can be the underlying cause.

For some reason at my last visit to my Orthopedic doc he randomly was like "give me your hand" next thing i know he is taking my thumb and making is paralel with my wrist (like in the pic on the main page) he then proceeds to ask me if it hurt...i was still in shock i could even do that..and no it didnt hurt. I didnt really realize what that meant until a few days ago. He didnt say much other then i was must have been born with loose joints. I have always been flexible but i never knew i could do half the stuff that comes with EDS until i actually tried it and realized i could do it. My knees hyperextend alot...my knee are really fucked up.

Anyways....I believe i have the classic type, but this is where my question and needing help lies. I need to find a doctor to offically diagnosis me and help get me on the right track. I have always had really bad random pain throughout my body. All of my doctors have always written it off as "stress, or in my head shit" for the past 4 weeks i have had the worst back ever I have been taking Oxy to help and it has done nothing....on the whim my room mate who has nerve damage recently got lyrica...she gave me some and the pain completly vanished. So now we know for sure its nerve pain. Now i just need to get a doc to not only offically diagnosis but also get me some lyrica. I am in the worst pain of my life...my back pain is so bad its causing me major miagraines.....I spent all of today in bed on or on the couch hardly able to move. I dont know what to do....I cant go to the ER cause they would just look at me like im crazy. But its my spine.....its horrible horrible pain.

I dont have the stretchy skin...well its a little stretchy but not much but i have every other symptom someone please help me out. I am located in Oregon and I am willing to travel.

Stretchy skin comes with the classical type. No stretchy skin usually gets labled Hypermobile (type 3). That doesn't mean that it is any less miserable though!
A geneticist has to do the official diagnosis, and although I don't live anywhere near your area, if you are willing to travel the best Dr so far that I have found is Dr. Francomano in Baltimore Maryland. From all the people I know that have seen her, she has spent the most time explaining, assessing and helping you figure out "what now".
I live in Dallas, and was diagnosed by a geneticist here, and although he was knowledgable and I was grateful for a daignosis, he didn't spend very much time with me.
Your other option is to present your orthopedist with your research findings and ask him to refer you to a geneticist in your area.
Because EDS is a genetic disorder, do any of your family members show similar signs? A geneticist will want to know that, and if you do, like your mom or dad or a sibling, he may want you to bring one with you to the office. It can occur a a mutation in your genes if you do not appear to have any family like you.
The pain vanished with lyrica because it is nerve pain from pinched nerves, probably in your spine or neck.
Something that sometimes comes with EDS is instability in the head/neck joints which can cause major headaches and pinch nerves.
Another common occurance is a tethered spinal cord (but that usually comes with urinary difficulty).
There is no cure, only palliative type treatment. Physical therapy is a wonderful thing because it builds up the muscles specifically around problem joints, where the connective tissue is not supporting them correctly.
I hope that was some help. I am a pediatric orthopedic nurse, and was just diagnosed with EDS in June of this year (at 27) and now am facing that 3 out of my 4 kids probably have it too.
Anyway, if you need some advice feel free to facebook me and I will help all I can!

Thanks for the info.....as far as my family....I have no clue. My family was abuse. I took myself out of that situation almost a year ago..i do not intend to go back. I dont think they do...but then again i dont know much about them.

I do have some urinary issues...i go often and sometimes its difficult to go.

hey katie, if you go to the edsnf.org site they have a doc list- and you don't have to pay to join, just sign up for the free account and you just give them your email.

also, there is a facebook group that is just about eds docs- people post good docs in their area in all sorts of specialties, sorry i don't have the name of it off the top of my head but if you search the groups you should be able to find it.

i've also heard of people searching for doctors that can diagnose marfans (a different connective tissue disorder)- so if there is no eds doc in your area, a marfans doc might get you started in the right direction.

good luck, getting the right docs can be tedious/time consuming but it is really worth it in the end!

My daughters and I see Dr. Bradly Tinkle, a Clinical Geneticist at Cincinnati Children's Hospital. He is the Co-Director of the Marfan/Ehler's-Danlos Syndrome Clinic at CCHMC and is one of a few doctorss in the U.S. that specialize in EDS. I highly recommend him and his staff. You can read more about him here: http://www.cincinnatichildrens.org/svc/find-professional/t/brad-tinkle.htm

do people really travel that far for care? The other part is i am on the states health plan since i get SSI....so i dont know how i would pay for it....but i am so desperate to get in somewhere ASAP!....im in so much pain

today i popped my finger out accidently and partially popped out my shoulder when i was working out

I was so desperate to figure out what was wrong that I went from Dallas to New York to see the docs at the Chiari Institute... I know people from Dallas and South Carolina who travel to Mayland to see Dr. Francomano. Fortunetley my insurance covered most of it, but people do travel to see specialists when they are desperate.

You should be able to find a geneticist in Oregon though, they are everywhere. I settled for the doc in Dallas and now kind of regret it. I wish I had gone to Dr Francomano like the neurosurgeon in NY suggested. SHe is a lot mor caring and follows through with your care. My geneticist pretty much said "You have it, there's nothing that can be done about it, and if there is any research you can participate in I 'll call you..."
Anyway, you could google "geneticist" in oregon.
Hope you find help soon!

Katie,
Here are a few names of genetic doctors in the Portland area I found. Some offices require a referral, you should call the office, make sure they take your insurance and ask if you have to have a referral to see the doc.

Dr. Susan Hayflick, MD
Dr. Richard G. Weleber, MD
Dr. Karen E. Kovak, MD

Hi Katie,
In seattle there's a geneticist who does special research with EDS so he's a good person to see for a diagnosis, he diagnosed me. I have POTS/EDS type III too. His name is Peter Byers and he works out of the UW hospital/research. Seattle is only 3 or 4 hours from Pdx depending on how fast you drive, so it might be worth it for you! You do need a doctor referral though. Try to contact their office.
Just to warn you, he didn't give me any advice on what to do to help my joints at all. He diagnosed me which was really helpful for getting other care, but seeing as he's a researcher he didn't seem all that interested in the patient care aspect. I would try seeing a rheumatologist or physical therapist for that.

Good luck and feel better!