WARNING: DO NOT scroll down if you are squeamish – I have a pic in there of a knee injection happening.
Let’s have a waiting room chat, shall we? I try to be positive with all things, stay busy, and make a difference as much as I can. Today I’m being real.
A common comorbidity with lipedema is Hypermobile Ehlers Danlos Syndrome. Mine actually got significantly worse after I had surgeries to remove diseased fibrotic tissue and painful nodules from my knees, so now my knees dislocate and subluxate unexpectedly. Sometimes they lock in a dislocated position and that hurts like childbirth level pain, with swelling that can last for days afterward. Some things I can do to avoid dislocation is to stay off of stairs and I do physical therapy to strengthen other muscles to compensate for hypermobile connective tissues.
Unfortunately, the frequent dislocations for me, are causing my knee joints to be totally wasted and I need double knee replacements. My orthopedist and I are trying to postpone the knee replacements as long as I can because of my age and because I’m very active and will wear new knees out in my lifetime.
So I have knee injections (steroids) every 3-5 months to help bring down inflammation when my nighttime pain goes to a 10/10 on the pain scale. Today was the day. Next time I’ll have a gel injection as well although studies are inconclusive about gel actually helping pain and inflammation. Here’s a close up of what that actually looks like.
May is Ehlers Danlos Awareness Month. I have it. I’m sharing this story to let you know that even ladies who appear positive and fun and lively have things we don’t talk about all the time, and it’s OK to share the good, bad and ugly. I promise it will help someone. For more information check out the Ehlers Danlos Society webpage at https://www.ehlers-danlos.com/what-is-eds/hypermobile-ehlers-danlos-syndrome-heds/#1677083502701-5cafc402-f34a.
If you have symptoms of hEDS, getting a diagnosis is complicated and time consuming. But it’s important because this condition is an absolute mobility destroyer, so the sooner you can care for your joints the better.
Until next time, fight hard, friends!
Susan
