Question
Hello,  

I happened upon a description of Ehlers-Danlos last week and was struck by how many of the symptoms I experience.  Right now, I am having an attack of cold feet and legs.  I can't get them warm for over an hour.  I have had this before in the past few years, sometimes in my hands, but this is the worst it's been.  I also bruise very easily, am extremely flexible / 'double jointed (can bend my fingers, toes, wrists ankles, etc past right angles), have a lower back and hip that pops and cracks to the point of being heard by others and sometimes feels 'out of alignment'; have diagnosed moderate osteo arthritis in my lower spine (and have had cervical spine surgery from compressed nerve and discs.  Sometimes I get a tired feeling like it's hard to hold my head neck up and I just want to lie down)).  I  have slightly 'stretchy' skin most on my forearms (I can pinch it up an inch where my husband cannot), have otosclerosis for which I have had 2 stapedectomy's (my brother also has it), tinnitus, lower jaw surgery where they also wanted to widen my upper palate (but I refused that part),  and I am very sensitive to medications, especially narcotic pain medication which makes me sick (I always ask for Zofran along with prescription pain medicine and or surgery.  Aspirin & others upset my stomach but I can take Aleve w food.  I also have susceptibility to side effects of other medications).  I have stomach problems and diagnosed IBS. I've had ovarian cancer stage 1 in remission 4 years.

Over the years I have spoken to doctors about these symptoms as separate problems...and felt like I shouldn't talk about all my 'little' problems because people will think I'm a hypochondriac.  I am not a hypochondriac.  I have been forced in recent years to go to doctors about these things, and hate it, but never did before.  I am 52.  I'm afraid to go to my doctor and ask about this syndrome for fear of being discounted. However, I'm concerned and feel I need to know what the risks and treatments are if I should have it.  Can a definite diagnosis be made with certain tests which I could ask for?  Do my symptoms sound like I could have this syndrome to a degree?  

I live in S California.  How would I find a doctor who knows about and treats this syndrome?

Thank you so much for your time.

Answer
Lisa,

You certainly have enough of the traditional EDS signs/symptoms to make it worth investigating.   There are several types of EDS and each type is diagnosed differently.  Since you are in So Cal, you are close to the Ehlers-Danlos National Foundation.  My recommendation would be to ask them or join their online forum and ask their members for a referral to a local doctor.  There is a local support group for Southern California that you can contact through EDNF.  http://www.ednf.org/

-Barb