I would say truly be careful as we have a connective tissue issue! So when we are taking MUSCLE RELAXERS and anything that RELAXES, our main issue is ALREADY LAXITY in our connective tissues. So, we want to remain cognizant of that. OUR ENTIRE BODY IS CONNECTIVE TISSUES! If you're anything like me, it is your PIRIFORMIS MUSCLE which is deep DEEP under your gluteus maximus minimus, your medial gluteal and everything else. Look up the anatomy on Google, or better yet download 3D SKELETON in the App Store! That way you can really get a close-up look at your anatomy each time you want to break down and understand your body better. The BEST THING you can do for yourself right now is MUSCLE BUILDING & STRENGTHENING. What you want to do, the ultimate goal, is to build support to hold yourself in place, which is going to be that muscle structure around your bones, ligaments, and tendons! It is a hard thing to do and trust me I'm doing it myself right now after having two back-to-back spine surgeries, but let's do it together! I too have hEDS (along with a bunch of other overlapping, compounding conditions!)! You're in my prayers!🙏🏽🙏🏽🙏🏽🙏🏽🥰🙏🏽

I can't speak to your specific pain, but I second what the above commenter is saying. The main thing I'm doing to improve my pain is physical therapy to strengthen muscles to stabilize and support my joints. It has started to really help me, but I still have quite a ways to go. I hope you find solutions!

Hey! I get a similar pain in my right hip that will start when I'm walking and it's a sharp pain that is only relieved when sitting down or lying down for a while. I don't have any drugs that help but I find that if I walk with a walking stick it helps prevent the pain from getting too much worse

Going to message you

Sounds like you may have a little stenosis going on in your lumbar spine? Have you tried seeing a chiropractor? Usually a daily routine of stretches and exercises can help you build up your ability to stand and walk a little longer? It’s a headache and sometimes depending on your mood? Can feel burdensome? But if you get into a routine, it really does help.

I have similar issues and I'm just getting worse and worse with no action taken and my muscles and ability to stand going downhill from lack of use. Any ideas on how to do this together? I've asked for physical therapy and they basically hand me a piece of paper to take home to try for 2 weeks and come back that's not what I need I need support and people. Is there a way to do that in a group...online..... with supportive people experiencing much the same thing? That would be such a godsend. I am at home alone all day and then I go to work in the office where I'm by myself. Everyday is getting worse and I can't get the answer to start going forward somehow.

🙏

If I were in your position, I would check out my lumbar spine and sacroiliac. Maybe it’s not coming from your hip

I have bursitis in my hip and get it drained every few months and cortisone injections

Also, y'all, here are a couple of links that may be of some use for support/information. 🙏🏽 Hope you find these helpful. https://m.facebook.com/ehlers.danlos/?wtsid=rdr_07KEHzOWCUD5meiMI&refsrc=deprecated&_rdr#_=_ https://www.ehlers-danlos.com/