Anyone with EDS?

YesIamaDragon

Anyone else with EDS? How are you healing?

Mountainlover

Hi , you mean ehlers danlos? I do not have a formal diagnosis (yet, I'm seeing a specialist, covid permitting, in March) but I have suspected it for years (I have the transparent skin, hyper mobility, bruising, pains, hernia etc etc).

After my UMX I had to undergo emergency surgery due to excessive blood in my drains, and they subsequently told me that they had to re-cauterize a vessel.

I also had an enormous bruise in my arm where they tried -unsuccesfully- to insert the IV prior to my emergency surgery (I was still awake when that happened unfortunately). And I ended up with bruises every where in hospital ,they had to take blood from my ankles in the end. I think that might be related to EDS.

Other than that, doctors were pleased with wound healing and recovery overall. I have fat grafting and implant exchange ahead of me but unfortunately no date planned due to covid. The TE is very uncomfortable. Ah, I was told they went for TE instead of direct to implant as my skin is so thin.

I am now struggling with significant shoulder pain . I had not regained full ROM though I was close but I'm now losing again. I have been seeing a specialised PT but pain started around 8 weeks post surgery and has increased since. Add to that canceled appointments due to covid... not fun. I've had fybromyalgia (diagnosed) since 2014 but this is another level of pain. Letrozole has been adding to the relatively mild stiffness I had already , so now I move worse than my mother! Various tendons prone to inflammation are flaring up , though that varies depending on the days.

I didn't do radio nor chemo.

How are you doing?