June is Lipedema Awareness Month – I’m sharing my story to help raise awareness.
Most women begin experiencing signs of Lipedema during puberty or pregnancy. Some may exhibit symptoms even in childhood. While I don’t have clear photos of my legs from my childhood, I don’t believe the condition was obvious back then. However, there might have been early subtle signs.
As a child, my mom would occasionally comment on my “bubble butt.” I also recall feeling self-conscious about the excess fat in my armpit area and the larger size of my thighs while at the pool. I probably wouldn’t have paid much attention to these aspects, but my step-siblings, who were very thin, called me fat and drew my attention to it. Prior to that, I had always considered myself a normal kid, but the name-calling made me self-conscious.
There were other indications that something was amiss. Until the age of 10, I was an active child and performed well on physical fitness tests. However, after turning 11, my performance deteriorated. My stepmom noticed that my posture was worsening, and she urged my dad to take me to the doctor. That’s when I was diagnosed with scoliosis, a curvature of the spine. Scoliosis is typically a sign of an underlying issue with connective tissue, but the doctor never investigated the root cause.
I only have a couple of photos from my childhood that show my legs. My legs look pretty normal at first glance. I am 10 in this photo and I am in the yellow tutu, my cousin is in the lavender. See how my hips and thighs are fuller than my cousins? She did not develop Lipedema. My tutu is also sitting higher than all the other girls – I remember it being too tight for my hips. It’s possible, this fullness in my hips and thighs was a very early sign. You may think I’m reaching, but my upper body is very thin and when Lipedema started to develop, it started there, in my upper hips and thighs.
When I entered junior high school at age 12, we were required to run track every day. Running became painful for my hips, my lungs would burn, and I kept falling and spraining my ankle. To be honest, the shoes I had were cheap tennis shoes from Payless and didn’t provide proper support for my feet and weak ankles. I struggled with push-ups, pull-ups and full sit-ups. Consequently, I consistently received a D grade in gym class each year, and I grew to despise it.
My gym teachers would often shout at me, “Angela, STOP LOCKING YOUR LEGS!” I didn’t understand what they meant. I stood in a particular way because I was tired and needed support. What they observed was my hypermobility.
The hypermobility, along with scoliosis, frequent falls, sprained ankles, and general weakness, were all signs of a larger problem: a connective tissue disorder known as Ehlers-Danlos Syndrome (EDS). It is worth noting that at least 60% of women with Lipedema are also hypermobile.
Upon reaching puberty, I noticed that my body was different. My thighs and hips were larger compared to my peers. Teenage boys would snicker as I walked past them in the school hallway, and I could overhear them commenting on my larger posterior. My mom would often boast about her great legs, stating that I hadn’t inherited them.
I wanted to eat a diet that supported my body, but the dietary information taught in school was completely misguided. We were taught that eating fat was bad and that we needed to consume 9-11 servings of grains. I blindly followed this advice because I didn’t know any better. At the time, anything high in carbohydrates and sugar was marketed as healthy because it was low in fat.
At the age of 15, I started working at McDonald’s and gained a little weight. When I got my first car and was no longer walking 3-6 miles a day, I started gaining more weight. I asked a thin co-worker how she managed to stay slim while working at McDonald’s. She told me she went to the gym, avoided eating fries, and kept her daily fat intake below 20 grams.
At the age of 16, I obtained my first gym membership and adhered to a daily fat limit of 20 grams while avoiding fries. Going to the gym helped improve my body, but I didn’t lose weight. I had a strong addiction to sugar, although I was unaware of its negative effects. When I felt hungry, I would suck on candies because they contained no fat. While working at McDonald’s, I often consumed soda, low-fat milkshakes, and low-fat cookies for dinner, all to keep my fat intake under 20 grams.
This sugar addiction had begun long before. According to my baby book, my mom started giving me juice at just 2 weeks old. I also remember her making “juice” for my siblings by mixing Jello sugar with water. We grew up drinking Kool-Aid and Shasta sodas. If we didn’t have sugary cereal, we would pour heaps of sugar on it to make it taste better.
It’s no surprise that my metabolism became disrupted and my body began to deteriorate. I was addicted to sugar from infancy, and following a low-fat diet only exacerbated the addiction.
By the time I turned 17, I became acutely self-conscious about my legs and buttocks. I would always wear nylons or tights with shorter skirts, and even with shorts. If I went to the pool, I would wear shorts or skirts to cover up my legs out of embarrassment. At that age, I believe my legs still looked nice, but they were larger than those of my peers.
It was around this time that a peer informed me about the link between sugar and weight gain and suggested I switch to diet soda to lose weight. He claimed to have lost weight himself after making the switch. However, at the time, switching to diet soda didn’t make a noticeable difference for me. Eventually, I gave up soda altogether and switched to water, which yielded minor success. After finishing high school, my diet didn’t improve much either, as I had limited funds for food. I mostly consumed SpaghettiOs, Ramen noodles, PB&J sandwiches, tuna sandwiches, and Life cereal.
At the age of 19, I briefly lived in an apartment infested with bugs. The situation was so severe that I slept with a can of RAID on my nightstand and sprayed it in my room, unaware of the harm it could cause me, not just the bugs. Within that year, I gained 35 pounds and outgrew all of my clothes. My doctor prescribed phen-phen, which increased my energy levels and suppressed my appetite. With the help of the drug, I managed to shed most of the weight, but it was banned before I finished. My eating choices while on phen-phen were terrible, but I believed they were healthy at the time. Cereal was a must to meet my grain intake. I was required to meet with a Dietician at the hospital. I remember being told to drink skim milk, diet soda, eat low-fat cheese on whole wheat bread. She showed me appropriate serving sizes of foods like chicken breasts. She never questioned my daily bowl of Life cereal with skim milk.
Year after year, my weight became a constant battle, accompanied by intermittent episodes of chronic fatigue. I tried every advertised method to lose weight. I experimented with the Special K cereal diet, consumed Slimfast shakes, ate Lean Cuisine and Healthy Choice meals, Snackwells cookies, and drank diet sodas. I would gain 20 pounds and then work tirelessly to shed it, yet I could never return to my previous weight. It was as if each time I gained 20-30 pounds, some of it became permanent.
The fatigue became debilitating at times, to the point where I was unable to drive myself to work. Just 15 minutes in the car, listening to the sound of the road, would exhaust me. Yet, at night, I couldn’t fall asleep until 1 am. Waking up for work in the morning was an arduous task. Even taking a shower left me feeling drained, and I had to sit down to apply makeup or style my hair.
During this period, we had a large backyard that remained unlandscaped. I spent a great deal of time outside during the summer, spraying Round-up. Looking back, I suspect that this activity contributed to my chronic fatigue and some of my weight gain issues. Additionally, I developed my first painful lipoma in my forearm. I was also prescribed antibiotics in an attempt to alleviate my fatigue and acne, but it ended up disrupting my gut.
This photo below is terrible quality, but it’s the only photo of my legs. This is age 25, standing next to my mom. You can observe that we have the same upper body size, but my legs are larger. This disproportionate size from top to bottom is a significant red flag and a common symptom of Lipedema. I wore size 14 or XL pants and medium-sized shirts.
When I was 25, I started experiencing severe pain from head to toe. To this day, I still don’t have clear answers from doctors about this pain. I went to a pain clinic and I wasn’t diagnosed with anything. The doctor along with his chiropractor and physical therapists treated me 3 days a week. I was prescribed Soma (a now banned drug), treated with chiropractic adjustments, ultrasound, traction, and PT exercises. The pain disappeared after a few months of treatment, for maybe a year. When the pain returned, the clinic was gone and I tried to find a chiropractor with a similar set-up, but I was unable to find a place. I settled for a regular chiropractor with 2-3 adjustments a week. The relief adjustments brought were temporary, and I spent thousands of dollars.
In a recent presentation by Dr. Karen Herbst, she mentions that women with Lipedema can experience fibromyalgia like pain. I’ve wondered if this is what I was experiencing. Later in life, at age 41, I figured out that the pain is triggered by consuming nightshades and exposure to pesticides and herbicides. I’ll explain more about this in future articles.
Towards the end of my 20s, I was struggling immensely with my health. I was constantly ill, suffering from multiple colds each year, with at least four of them progressing to bronchitis. Chronic fatigue plagued me, and I experienced severe pain on the right side of my body. A close friend at the time even labeled me a hypochondriac because of my never-ending illnesses.
My digestive system was a wreck and sometimes I suffered with awful 4 hour belly aches. Other times I wasn’t able to digest my food. I was always bloated, gassy, and struggled with constipation.
Frustrated with feeling perpetually sick and experiencing weight gain, I sought answers from my doctor. However, her response was puzzling. She told me that my frequent illnesses were due to not taking my Advair medication regularly. I couldn’t comprehend how not taking medication could lead to catching so many severe colds.
These experiences and symptoms paint a picture of the challenges I faced throughout my childhood, adolescence, and early adulthood. While some of the signs may have pointed towards early Lipedema and Ehlers-Danlos Syndrome (EDS), the signs and symptoms worsened over time.
In my next post I will share how I corrected my immune system and started my diet overhaul. Initially my body responded well, but the undiagnosed Lipedema progressed.