Any Ehlers Danlos / Lupus members?
My rheumatologist is beginning to look at ED as a comorbidity for me. I have a history of congenital heart defects. Dx Lupus in 2001. Other dx include fibro, Sjogren’s, mixed connective tissues disease, Raynauds.
Recently I’ve been having episodes of high heart rate, dizziness, “cotton ball hearing” (sounds like you have cotton stuffed in your ears) upon standing. It’s been harder recently to regulate my body temp and hot conditions cause my symptoms to be worse. I’ve always been “double jointed” or hyper mobile. I’ve always bruised very easily and had smooth hairless skin. Recently I’m having severe pain in my hips after sitting for periods of time. Upon standing, it takes a good 10 feet to “work itself out.” I’m waking up because of the hip pain.
I’ve had X-rays of the hips only to find no visible issue. I’ve discussed it with my cardiologist, but the more I read wonder if my symptoms could be due to POTS, which is usually true of ED patients.
Just interested in anyone who has had similar issues or a history of Ehlers Danlos. I’d like to hear your journey to see if there are similarities.
Thanks! T
Hi @Treed13 - thanks for your question.
Your symptoms/side effects can be a symptom/side effect of Ehlers Danlos but it does not necessarily mean it is caused by that. While we
can’t provide medical or diagnostic advice via the internet (for your safety), we do encourage people to reach out to a doctor or specialist any time they experience new or worsening symptoms or side effects, to rule out any possible underlying causes. They know you best! I wish I could offer some insight or experiences, but hoping other members out here can. Please keep us updated! -Geri (lupus.net, Team
Member)
Hi, thanks for asking. Geri had a great point that these symptoms may overlap with some EDS symptoms but we can’t come to the conclusion that’s where they are from; we have to leave that to the medical professionals. However, I can share my personal experience with you.
I have lupus, fibro, and sjogrens, among other health issues. My doctors are starting to suspect that my 3-year-old and I could have EDS because of hypermobility and other issues. We are starting the testing process (insurance pending, of course).
Lately I have also had issues regulating my body temperature. I have always bruised easily, had very soft, nearly hairless, and “veiny” skin. I’ve always had hip pain and had to buy an extra soft mattress to mitigate the hip pain while sleeping. My pelvic x-rays have come back normal. Many of these things could possibly be related to lupus. I’m sharing my experiences to reassure you that you’re not alone with these things (not as medical advice).
Some of your listed symptoms also line up with POTS, for sure. It’s worth bringing up to your medical team if you haven’t already. It may be a long time before I get answers about whether I have EDS, but I will try to come back and update here if I do. I have friends in the chronic illness community who have EDS and lupus, but I’m not sure if the two conditions are necessarily related. Thanks for asking, and I hope you get all the answers and support you need. -Ava, lupus.net team
