Amanda Edwards88 said:hey girls 🙂
I found out I had lipedema during the pandemic after reaching out to a clinic outside the US—specifically in Germany—that specializes in treating it. Had some consults with their specialists and they finally confirmed it.
As for doctors here in America—my GP honestly didn't seem to know anything about lipedema. My doctor gave me this weird look a few years back when she saw my blood work; my thyroid levels and everything else were totally normal... yet at the same time, I was carrying an extra 30 pounds. She couldn't wrap her head around how I could be overweight while having perfect labs and blood pressure.
Regarding my body, the first place it showed up was my thighs. I noticed them blowing up way back in elementary school, maybe 3rd or 4th grade. Toward the end of elementary school, I started getting really into sports for a few hours every day—weights, biking, rowing machines, all that. After a few months, all the other girls who started training with me got toned arms and legs and looked like actual athletes, while nothing changed for me at all. Fast food wasn't even a thing for us then; most kids were eating healthy, so it definitely wasn't a diet issue.
In high school, I’d notice my jeans getting tight by the end of the school day, like my legs were literally swelling up while I was sitting in class. I didn't have weight issues per se—around 125 lbs, so a normal BMI—but I was wearing a size 12 on bottom while wearing a size 4 or 6 on top. Also, whenever I lost weight, it always just went from my upper body—chest, waist—while my legs stayed exactly the same.
When I was 26, I went through a phase where I starved myself on 500 calories a day for a few months because it drove me crazy that my legs were always so much bigger than my upper body. Of course, I only lost weight in my upper body. Nothing down below. 🤣
Around age 18, fat started building up on my upper arms. It was subtle at first, but once I hit 30, you can really see it when I try to smooth out my arms by a couple of inches. Same with my forearms. That fat actually hurts now, especially in the summer when I'm working in the heat. Just hoping it doesn't grow too fast.
Right now, the circumference of both my thighs is about 8 inches larger than my hips.
Based on what the doctor thinks, I've got over 15 pounds of pathological fat that needs to be sucked out... which means maybe 3 or even 4 surgeries (if they also take out the potential lipedema in my neck).
The worst part is the lipedema in my ankles and around my knees. I have that typical lump or "ball" on my ankle that feels awful in the summer if I'm standing in the heat for long. As for the knees—hard lumps of fat appeared on the outside of my knees that make walking uncomfortable.
A few things I'm doing to try and stop it from getting worse:
Lipedema diet... mostly whole foods and drinking tons of water.
During the pandemic, I cut out all processed food, snacks, sweets, and sugar. I stuck to fruits, veggies, fish, eggs, and very little meat. I also use grated ginger and other anti-inflammatory foods to help with the inflammation in my body.
Manual massage
Lymphatic drainage
Elevating my legs above my heart
Wearing compression stockings, tights, leggings, etc.
Walking, biking
Occasional fasting and intermittent fasting
If you guys have any advice or experiences, let me know.🙂
Mind sharing which clinic you reached out to for that? Thanks 🙂