Hi everyone! I’m hoping to hear from others who might have had a similar experience.
I’m a woman in my mid-20s and was recently diagnosed with EDS (I’ve always known I was hypermobile, but only just got the formal diagnosis). Over the past 2–3 years, I developed progressively worsening pain in my lower joints, especially my knees and hips. It got to a point where I couldn’t even walk 500 meters without severe pain that would last for days. I also gained some weight during that time, which was difficult after being very slim most of my life.
At some point I realized that avoiding movement was actually making things worse, so I started taking it more seriously. I began physiotherapy, now work out almost daily, and swim twice a week. The improvement has been huge. I have much less pain, feel stronger, and have lost the extra weight.
However, one thing hasn’t improved: persistent fluid retention around my knees. I always assumed it was just fat, but now that I’ve toned my legs and lost weight, it’s clear that it isn’t. My doctor confirmed it’s fluid buildup. My knees look swollen most of the time, especially around and slightly below the kneecap.
It doesn’t bother me too much aesthetically, but I’m concerned because it doesn’t seem normal or healthy. So far, I haven’t gotten much help or explanation from doctors.
Has anyone with EDS experienced something similar? Is this kind of fluid buildup in the knees something that can be related to EDS, or could it be a separate issue entirely? If you’ve dealt with this, did anything help?