Going to see a rheumatologist next Wednesday. Any advice on how to make my concerns clear?
Hey guys! I (22f) do not have an official lipedema diagnosis, but I do have a large amount of the symptoms. What I do know is that I have stretchy ligaments and wide hips which has caused me knee pain since I was 14. An ortho specialist said I have Patellofemoral Dysfunction/syndrome ( i don't run) and my knees don't track properly because of puberty and stretchy ligaments which is what causes the pain. That's just a bit of context.
I am going to see a rheumatologist next Wednesday and I want to mention lipedema to them so they can go through steps specific to that to either diagnose it, or rule it out to send us down another path. It's so hard though because I don't want them to think I have just "diagnosed" myself from things I've seen online. That's not at all what's happening I just need answers because it's painful and confusing and has been for the majority of my teen and young adult life.
From what I've tried to find, rheumatologists are able to diagnose lipedema because it it has to do with inflammatory and autoimmune factors, if I have that right? Has anybody been diagnosed by a rheumatologist? If so, what did you say, how did you mention it to them to get the investigative/testing steps moving? Any recommendations on how to mention it or if rheumatologists are able to or are familiar with lipedema, would be really greatly appreciated. I'm so tired of being in pain all the time and not knowing wth is actually happening in my body.
Thanks guys:)