Do i have EDS

[annelie1980]

Hi folks,
Just after your thoughts. I was diagnosed with CM1 last September, and stumbled on this site not long after. I seem to be going round in circles and would like some help or suggestions.
I was pretty healthy until 2 years ago, since then its all been downhill. I also have GORD/GERD, Endometriosis, Hashimotos Disease/Hypothyroidism, Chronic Daily Headache (which i just think are typical CM headaches), biliary disease/stricture, OA in my LS Spine, SOD,vitamin C deficiency, neuritis and last year i got pneumonia (that last one triggered a whole lot of CM symptoms off too!) ....I think thats most of it.
In the last 2 years ive also had a total hysterectomy, cholesystectomy and 2 CBD stents via ERCP.
I know EDS, reflux and Hashis is a common combination for CM sufferer's. Given the fact my vit C is low and this effects healing and repair, i have some hyper extension of my fingers/hands, ive had wound dehiscence, my boobs/thighs/belly are covered in stretchmarks (long before kids and im not huge just a little bit cuddly),  im short, 35  considerably way too grey haired by age 27 and all my scars have widened and have a crinkly look/feel, had an osteochondroma as a child....with all that...do you think its silly to ask my GP to look seriously into the possibility? Or am i just getting carried away?
My main goal is to get healthy and get off as many unnecessary pills as possible. In order to do that, i need to be treated for the right conditions. My 13 year old daughter  has worse stretch marks than me which as you could imagine rocks her confidence. She's also very flexible and dislocated her knee last week for thr first time. Unfortunately she seems to be following in my path healthwise so i am concerned for her also.
Any advice or suggestions are most welcome x annelie

[selmaS]

  No worries.....seems most Drs are not aware......2 of my sisters and a cousin were DX'd with endo...and none of my Drs would check me for it...even tho I had scar tissue in my urethra and needed it to be dilated from time to time...ugh....Drs just do not want their patients to inform them what is going on, they want to discover it for us and when they can't,,,,,it''s all in our heads,......and for us with Chiari it really is.....just not the way they meant.

Yes there is so much that can affect us and we are prone to auto immune and connective tissue disorders so that opens us up for so much in addition to Chiari....

[annelie1980]

Thanks for the encouragement :) I was unaware of the endo link. Its like reflux and hypothyroid, commonly linked. There is just so much that can affect our little bodies...hmmm makes me curiouser and curiouser! :)

[selmaS]

  Hi...Not at all....deff check for EDS...endometriosis is typical for those with EDS and since you have had it it seems your at a more elevated level to be DX'd with it.

EDS can also inhibit our ability to absorb vitamins and minerals and since you do have low levels....again another reason to suspect EDS.

Once you are seen by a true Chiari specialist they should look for this condition as it can affect how you feel and heal should surgery be an option.....You can have your PCP check you for it, but it seems to be like Chiari in that not all Drs are well informed and experienced with it....