Hello all! I am so glad I found this board.

Tomorrow I have an appt. with a rheumy and I am quite nervous. Here is my *quick* story..

I have always been exremely "bendable" and it has always been painful, since I can remember. My parents took me to the drs. just to be told I have growing pains". Now into adulthood, I am still Gumby as my friends call me, and it is leading to more problems than ever, as a matter of fact, I sprained my thumb at work just yesterday! My intrest took in EDS one day when I saw a show on Discovery about it, and I was like, "OMG, that's me!" My mother and one of my daughters are just like me.. here are a few of my symptoms..

Sprains
subluxation (no full dislocates that I am aware of)
pain all of the time!! ugh! mostly right in a joint, but most severe in my low back
hypermobility for sure, I can do every trick you can think of... *sigh*
my joints click ALL of the time! esp. if I have been sitting for a long period of time
multiple hernias
migraines
vision (farsighted, daughter has a slightly crossed eye)
chronic loose stools, bloating, abdominal pain
low BP (yesterday it was 106/64!) the nurse took it a second time.. =)
diziness
extreme fatigue..
I shattered my elbow because it bent backwards when i was little and my scar is about an inch wide and "saggy" and thin.
and all of my incisions split open after sutures removed.


Worst of this.. I'm a massage therapist, I love what i do, but I want to die every day I come home because I hurt so bad! I have no idea if my doc tomorrow knows of EDS, but I'm afraid to bring it up...i Don't want to tick him off... but I am almost certain of this! No one in the fam is dx'd, but, me and my mom are 100% alike, and she has super stretchy skin (i don't think I do), oh and we both bruise terribly. I get bruised from skeeter (mosquito) bites, and they are with me for a bit over a month. yikes!

What do you think? And what is the difference between joint hypermobilty syndrome and EDS exactly? Is JHS genetic?

Thanks in advance.. this took forever to type with my had all splinted up!

While I can't answer your questions, I did want to say .

Thank you!!!!

Welcome! Not sure where you're located, but if the rheumy is a bust, I'm sure we can help you out Hopefully your rheumy is awesome!!

Thanks, I'm in the Chicago area.. the others were a very far drive, so i stuck with the one that was close by.. car rides suck. I'm just nervous i guess I'll make him mad if I bring up what I have suspicions of.. like idk.. challenging his profesional opinion. I always have bad luck with Drs.. maybe it's me, not sure. Do I bring it up? Or let him do his thing, and accept whatever he tells me?

Ok, so I just got home from the Dr. appt. I'm really not quite sure what to think of it yet. Basically after my examination, he said "I believe that you were just born with a collegen defficiancy, and that's why you bend so well. It also explains your hernias and wide scarring. Please take this Ibpreoufen and come back in one week." He briefly mentioned EDS, but said "you don't have the skin for it" and said he didn't know much about it so he doesn't know if he can call it that. What he was concerned with were my migraines and my IBS. He said the migraines are really just tension headaches and the IBS kind of stumps him, and he cant understand why it is happening... what gives?

I'm a little frustrated, I don't really know what to do from here. I ended up calling my GP to let him know how it went, and he also said it was a Zebra he is not familiar with. He said my best bet is to research and find a Dr. who is familiar.

Any advice? Anyone from Chicago dealing with this? =)

Thanks everybody.. I hope you're enjoying your day today!

You have a collagen disorder but not the skin so it's not EDS? Well that's silly. Not all of us have the stretchy skin. At least he could admit he doesn't know about EDS, so that's great. Seeing a geneticist would be your best bet. I'm going to be moving back to Chicago next year (Arlington Heights/Palatine area) and will also be needing a doc. I know there are quite a few people I met at the EDNF conference that were from Chicago and I'm pretty sure they all saw geneticists eventually.

Here are a couple docs I found on the EDNF directory:

Calvin Brown
Division of Rheumatology
240 E Huron St
McGaw M300
Chicago, IL 60611 USA
Phone: 312-503-8003
Fax: 312-503-0994

Jerrad Zimmerman (sports med)
Carle Clinic Ortho Rehab
810 West Anthony Drive
Urbana, IL 61802 USA
Phone: 217-383-3300
Fax: 217-326-2368

Frim David (neurosurgery)
University of Chicago Kids Hsp
5721 S Maryland Ave
Chicago, IL 60637 USA
Phone: 773-702-2123
Fax: 773-702-3518

As for the IBS... it's an EDS thing. I'd say the VAST majority of us have some sort of functional bowel issue (IBS). Basically our bowels just forget what they're supposed to be doing and then overreact when they do. It can be associated with autonomic issues, which are also extremely common. It is highly likely that they could be tension headaches. I'd also look up occipital headache and see if that hits some of your symptoms. I know I get them due to my degenerative disc disease and craniocervical instability. That's something a neurosurgeon should know a bit about.

This should really help you. Not all doctors feel this way though

I have to tell you that you all are truly amazing...

I will try to get in with a geneticist as my next step..

Thank you!!!

welcome and hugs

xxx

It sounds to me like you have Hypermobility type EDS, and that doesn't really present with much skin involvement in most of us. (I only have a little bit, and it's classed as 'classical type overlap' or some such.)

Also, you mentioned incisions splitting and odd 'saggy' scars. Those are definitely EDS skin problems, even if you don't have any stretchy skin.

I think the problem here is that your doctor's only seen the old photos of EDS stretchy skin that they show in med school (go google 'EDS stretchy skin' - THOSE are the pictures they show new docs...) and therefore assumes that if you don't have that, you can't have EDS.

So yeah, like he said, he doesn't really know much about EDS, definitely go see one of the docs Saucy listed!

Can't think of much else to say besides HELLO and WELCOME

Many of us have had a long road to understanding our bodies quarks, let alone a diagnosis. Please understand that not all doctors are created equal by any means, and that you are your own best advocate. Put in the time and research, and trust what your body is telling you.

Good luck, and we are here for you with whatever we can help with/you need.
Peace

My skin isn't overly stretchy and I have classical type. I haven't dislocated (knock on wood) but I definitely have the soft, velvety skin with severe stretchmarks. I don't have any scars really, but I'm sure they wouldn't be good. Welcome!! It was the people on here that prompted me to see Dr. Francomano in Baltimore (one of the most informed docs out there about connective tissue disorders), but after going to the conference, most of the ones on that list are excellent as well. I figure if they went out of their way to join and be put on the list, they probably know something... hah.

Here's to crossing all of our crossables (lots of them... bendiness, ya know?) that you can get a real answer soon!

I suspect that I might have EDS, but then again, I might not. I've been reading this board for awhile and decided to make an app't with Dr. Francomano. I've read so many good things about her on this board--and I figure that since EDS is her specialty, I'll get a definitive answer. She's out-of-state for me, but I plan to make the trip just to see her.

All in Knots

She's also out of state for me... but omg worth it. She goes over EVERYTHING, does a really thorough physical and just listens to you. It's the most refreshing thing ever having someone really, openly listen to you.