My Physical Therapist Has Been a Godsend for My Lipedema

Here's an update on my quest for Lipedema surgery

Hey Everyone,

I had a physical therapy appointment yesterday, and has been instrumental in helping me relieve my pain and swelling to a manageable level.

Before I started seeing her in November, I went through my day in excruciating pain and fatigue. And although I still hobble around, I can’t get through my day (and through the night) without feeling like I wanna die.

My Physical Therapist (PT) specializes in lymph massage. She has shown me how to perform MLD (manual lymph drainage), facilitated me to get a compression pump (I’m using my pump while I’m writing this; I’m multi-tasking!) and given me a lot of resources for managing my swelling.

I had a visit with her a few days ago. She told me I “Graduated” and should be able to keep my swelling under control. I’ve learned a lot from her about controlling my lymphedema.

Then we measured my legs and arms.

To measure my legs, she makes little dots up the front of my legs, about 10cm apart and measures the circumference at each point. She enters those individual numbers into my chart onto a grid. From there she can compare to my previous measurements.

Well, my legs have gotten bigger.

I asked her how, with my diligence of managing my swelling, how could my legs have gotten BIGGER?!

She looked me in the eye and said, “That’s lipedema.”

Lipedema grows. It will keep growing regardless of how much work I put into my body. I’ve already put on 50lbs and it’s not getting better. This is the reason I’m going down the surgery road.

I’m getting so close too. I have my FCE (functional capacity evaluation) next week. That eval will show how much mobility I’ve lost. And I’ve lost a lot over the past year.

The FCE eval is pivotal for submitting authorization to insurance, because insurance won’t even consider covering for liposuction unless your mobility is compromised. The FCE is the only way to show where your mobility lies in comparison to a normal and healthy person at the same age as you.

I have no idea what the PT will do with me in my FCE eval, but when I’m done with it, I will let you know.

I also have an appointment with an ortho surgeon to check my knees. Part of my pain is from they weight load on my poor, arthritic knees. What I’m hoping will happen is the surgeon says I need to lose weight before I go into surgery. In fact, I’m going to prompt him towards this and ask if he can document it in his note. We will see how that goes.

This will be a busy week! I can’t wait to tell you what happens at these two appointments.

Michelle