View Full Version : ehlers danlos syndrome question

07-10-2011, 08:41 PM
I didn't know where to put this and maybe this whole site isn't the right place... but it said to ask the experts and then i ended up here. Hmm... so, experts should answer i would guess. :p

anyways... i have EDS hypermobility type is the prominent subtype but i have features of other types including some vascular involvment and fibrous tumors, among other things.

i am trying to find answers related to the fibrous tumors and to what may be happening in the fascia and/or subcutaneous layers for me. i have widespread pain that has been occasionally labeled as fibromyaglia and may more accurately resemble myofascial pain syndrome... either way there is something happening in the fascia and subQ... the massage therapist described it as feeling as though the fascia/subQ was fibrous or clumped together somehow, restricted.

i have been researching for hours and hours but with no luck. i am wanting to know what conditions or issues involve the fascia/subQ in this way. i have had several fibrous tumors (tendon sheaths 3 times, thyroid gland, uterus) and i think potentially they are related.

either way... i want to understand more about what is affecting this and how. Because EDS is rare, many things linked to it may not be mentioned in the literature. I am thinking there must be some known condition or process within these layers that is occurring for me and I just need some direction.

i have found collenageous fibromas, fibroma of the tendon sheath, giant cell fibroma and clear cell sarcoma... the FTS is a viable possibility but i have found nothing as of yet that describes a condition that leaves the fascia/subQ feeling fibrous or matted in a nonlocalized way.

i am 40 yrs old, female. Any direction to something useful would be appreciated.


07-11-2011, 12:39 PM
do you have a specialist helping you? i don't know where you live, in the usa there are many hospital clinics that deal with just this syndrome. they are all listed on search for ehlers danlos syndrome clinics. they are listed from maryland to california. maybe you are near one. i know how dibilitating this syndrome is but instead of asking us i think you should as a real professional. if you need the name of some clinics tell me where you live.