281?1253674568
Ehlers-Danlos Syndrome User Group
New diagnoses to go with my EDS
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
154 members
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

New diagnoses to go with my EDS

Yesterday went to the Dr and...
Olecranin bursitis and trochanteric bursitis (hips)
Retrocalcaneal bursitis heels
Costochondritis ribs


Last night went to football game with kids and when they do the stomping on the bleachers I thought wow this really is painful...weird.  Today it is near impossible to walk!
7 Comments
Blank
620923_tn?1398277065

  Hi Mel, I have issues with all those areas, but have not gotten ne of the dx's...how didu, or should I say what testing was done to determine these?

I learned a long time ago not to even try and tap my toe to music, as my whole leg would stiffen up till I was not able to keep the beat, and I looked like a spaz, and my leg would hurt....
Blank
1903798_tn?1333908888
Yeah my whole leg hurt too...really she confirmed by my history and my asking.  Research said it is often diagnosed that way and sometimes X-ray.  She ordered custom orthotics for me too but I may insist on seeing orthopedic dr...
Blank
620923_tn?1398277065

  I had orthodics for in my shoes, could not sit with them in my shoe let alone stand up and walk....I had shin splints and all, growing pains as a kid that I now know was EDS pains...ugh

  I also had issues finding shoes, did u have that problem too, always felt like a rock was in them when it was a strong arch support and they hurt my feet and certain style shoes just would not fit as I have a high instep I think it is called....
Blank
1903798_tn?1333908888
Oh the growing pains were horrible even when I was 20!  I also get a weird nerve pan between my toes in some shoes.
Blank
620923_tn?1398277065

  B4 surgery I would get those electric shocks in my toes, I thought it was static electricity and was the shoe I was trying to wear.. a pair of pigskin boots....lol...every time I put them on I would get zaps...

What I find weird is that my mom had 4 kids and I was the only one dx'd with growing pains.....

  
Blank
1903798_tn?1333908888
I find it weird that the pains were so bad and they said oh growing pains...I had them when I was 20.  My daughters Dr told me growing pains were not normal and to take vitamins....(years ago). Now knowing what we know....
Blank
620923_tn?1398277065

  Oh I know.....knowing what we know now....ugh....I want to know y the Drs then did not know this???? huh?

  What a bunch of u know what....sigh
Blank
Recent Activity
620923_tn?1398277065
Blank
selmaS commented on jiggle93's status
6 hrs ago
1827123_tn?1383868876
Blank
jiggle93 If your brain is no longer ... Comment
6 hrs ago
620923_tn?1398277065
Blank
selmaS commented on first flow study 4/22...
Apr 22
MedHelp Health Answers