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People with Ehlers Danlos Syndrome bruise easily. Deficiency of Vitamin B12, folic acid, or Vit K could be the cause of bruising. They could also be fragile spider veins. The bruise could also be petechiae, which are pinpoint-sized red dots under the surface of the skin. They can result from autoimmune disorders, such as lupus or rheumatoid arthritis, bone marrow disorders such as leukemia, inflammation of the veins, as a side effect of certain medications. Since you have a facial rash, possibility of lupus should be seriously considered and followed up.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!
Hi we do have a group for those with Ehlers-Danlos....
Sometimes there r other issues in addition to the EDS...I have quite a bit as well...many r autoimmune issues....I am sure if u look u will find it too.The raynauds is part of EDS....not a separate issue...my NL told me it was not raynauds, but the EDS causing the issues I was having.
May I ask, r u on ne meds that could be attributing to the sun sensitivity?
The swollen joints could be RA..another autoimmune disorder.....
Have u had ne testing to determine the cause of ur headaches?....and how often do u have them ...r they bad?...migraine like?
I was searching for terms related to Ehlers Danlos Type IV concurrent with mouth sores and lupus like rashes (which I've also had for years- since my 20s, and my daughter, 19, as well), and came upon your post. After my 4th genitourinary hematoma surgery this summer, we were sent to a Rheumatologist, who has just diagnosed me with VEDS. Prior to this, I had been diagnosed with lupus for years first, then Behcet's (because the mouth sores fit with the bruising and hematomas). We were really surprised to learn that all the symptoms except the mouth sores were actually due to VEDS (the doc picked up on the hypermobility and joint problems/pain because I didn't think to tell him about them). I had no idea that they could be relevant because I'd lived with with them for so long. I share your concern about the lupus vs EDS issue, because the treatments for the bruising in lupus is contraindicated with EDS (particularly in the avoidance of prednisone in the latter, because it weakens the blood vessels.
When I joined a VEDS support group, I found one other person, who, like us, has mouth sores with VEDS. I've also learned from fellow Vascular EDS folks that it is not uncommon for some to be erroneously diagnosed with lupus or Behcet's at first because lots of the symptoms and signs look autoimmune. Although the Rheumatologist is quite certain that I have VEDS, we are having some genetic testing to confirm it for sure; my daughter is only 19, and she has many of the characteristics and symptoms I had in the 20s. Although I hold out a spark of hope that the diagnosis is EDS of a less fatal type, along with a concurrent autoimmune disease like Behcet's, it seems that more statistically likely that the mouth sores are an aspect of weakness in the oral cavity, due to the rubbing and weakness of oral tissues.
Do you know which type of EDS you have? There is some crossover between types 3 and 4; you might want to confirm genetically to rule out Type IV (lung issues tend to favor this type as well).
All the best to you!
I know it's been a while since you posted, but if you're still watching this thread, I thought I would add something.
My mother, myself and my daughter all have EDS, although EDS never accounted for our funky blood work docs have been trying to find out what other auto immune disease we had as we all had negative or speckled ANAs. Well my mom just tested positive finally for Lupus. Her Anit DS DNA tests came back strong positive although ANA is still neg. Doc said sometimes you don't catch a positive ANA, but she does indeed have EDS and Lupus. I wonder if my doc will want to retest me now, as our labs were always almost identical.
Anyway, have your doc keep checking your blood, and have him run you DSDNA! My mom was negative her whole life until now. So it CAN happen.