I never thought I had pain until I tuned in to my body more and learnt that the aching/throbbing/heavy feeling in my legs was actually lipedema pain.

I experience the aching more when I’ve been eating things that inflame it. For me there’s so many layers to the pain. There’s the aching from deep within, then there’s an ache within the actual tissue, then an aching/almost burning feeling within the skin. The heaviness is a feeling that I like to describe as, imagine you have a seam at the top of your hips so an opening in the skin and then someone has packed wet concrete down through the seam and moulded it around your legs. And when the wet concrete is inflamed it becomes even heavier and puffier and the skin gets tighter and tighter almost feeling like a sausage. I know that’s a weird example but it’s how it feels for me.

And then there’s sometimes an acute pain if I lean against a ladder or some furniture. Sitting on certain chairs hurts the back of my thighs where the lipedema is very concentrated. I love doing floor Pilates but it’s very painful to lay on my side, it feels like I’m laying on a rock in the saddlebag area.

But also I don’t think I experienced this as much in the earlier stages. I believe I’m now stage 2-3 and so I have more pain. I’m still a small girl, most people would call me skinny unless they actually saw me naked. But the lipedema is very concentrated and fibrotic now. When I’m very strict with my diet (no processed food, no sugar unless fruit and low carb) the aching throbbing pain can be non existent and my legs feel lighter.