I have never posted, but I have found many of the information on your group page helpful.
I have not been diagnosed Ehler-Danlos Syndrome officially, but both my GP and Rheumatologist believe that I have it (ruled out lupus & rheumatoid arthritis). I have an appointment with a connective tissue specialist, but it is not until August.
I was wondering if any of you have issues with fragile veins. The other day I was walking and had shooting pain in left knee cap. I looked down and it had a swollen quarter sized lump on my knee cap (picture attached). It was warm to touch and it hurt to bend my knee too much. I thought it could have been an allergic reaction, but neighbor thought it was a blood vessel/vein that might have ruptured/popped (don’t know what the proper terminology is). The next day the whole knee cap area was bruised (lump had gone down). This happened Friday afternoon and I still have bruise today (Tuesday morning). I do bruise easily and have them on my legs most of the time, but this time I didn’t hit it at all and I have never had it swell this way.
I was just curious if this is related to Ehler-Danlos, maybe medication (started 750mg Nabumeton 2 weeks ago & it’s been helping), or something else. I wasn’t sure if it was anything serious or if I should be on the lookout for anything else that might be more serious. The only other time I have had a vein “break” like this before was 2 weeks prior when I accidently weed whacked the top of my left foot . Thankfully I don’t have a very good weed whacker and it left mostly welts and didn’t break much skin, but it did leave a large swollen area where the blood dispersed.
I will probably call GP, but I also wanted to ask everyone’s thoughts here since my doctor is not as familiar with the Ehler-Danlos.