Lipedema My Story

My Lipedema Story – Part 4 – Rapid Progression

June is Lipedema Awareness Month – I’m sharing my story to help raise awareness.

In my previous post, I shared how a lifestyle change helped with my undiagnosed Lipedema. However, as I transitioned to an organic whole food plant-based diet, and I gained weight despite rigorous exercise. I also underwent a major surgery to remove my tonsils and adenoids, which are part of the lymphatic system. The lymphatic system clears away infection and keeps body fluids in balance. 

I noticed the Lipedema starting to spread to other areas of my body. I didn’t know at the time and didn’t understand why I was getting bigger.

In the first photo, taken in March, I’m seen trying on my wedding dress. The second photo, taken in June, shows me wearing the same dress. It’s important to note that I hadn’t made any changes to my diet during this time. I became more active as the weather warmed and when I wasn’t working out, I was preparing our gardens for our wedding. I was actively engaging in yoga, Pilates, walking, and occasionally commuting to work on my bike. However, you can clearly see swelling in my upper body on my wedding day. My breasts are much bigger, and there is a lot of swelling in the armpit and in the arms.

When I reached the age of 38, my life took an incredibly stressful turn. I took in my 14-month-old nephew, who was being abused by his birth parents. Despite the added stress, I maintained a clean diet. My meals consisted of plain rice protein smoothies with spinach, chia, hemp hearts, almond butter, almond milk, pumpkin, apples, and pumpkin spice. On some occasions, I would substitute berries for pumpkin and apples. Later I switched to Vega protein powder for convenience. For lunch, I would have my dinner leftovers, salmon or chicken with broccoli or asparagus, a salad, or a vegan Amy’s meal. The only carbs I indulged at the time were quinoa, brown rice, and sweet potato. To appease my sweet tooth I’d have a square of organic dark chocolate or a Lara bar. Snacks were usually cherry tomatoes, almonds, or some berries.

My work encouraged eating a plant based diets. We had an internal social network that gave you points for not eating meat and eating more fruits and veggies. I set-up a CSA – Community Supported Agriculture program for employees. The weekly CSA delivery gave me ample vegetables for my diet. Despite my efforts to eat what was considered “clean,” I was getting bigger and eventually reached my highest weight of 170 pounds (Oh how I wished I could be 170 again).

At the age of 39, I began undergoing fertility treatments. After the first failed treatment I incorporated a lot of new supplements ($200 a month) and some eggs and a little meat into my diet. After 6 months and our third round of IVF, we finally had a viable egg and we were able to get pregnant.

During my pregnancy, I experienced a lot of pain, anxiety, and insomnia. My joints ached, and I fell several times while attempting to go for walks. I was constantly tired, but unable to sleep properly. At one point I had to be put on IV fluids and Zofran. I felt miserable, and my pain and fatigue worsened after receiving the d-tap vaccine. When I brought these concerns to my doctor, she dismissed them, attributing them to my age and the nature of a “geriatric pregnancy.” I wrote more about my pregnancy experience here.

During my pregnancy, my bra size went from D to DDD. After giving birth, I was a G cup, but struggled to produce enough milk for my baby. It wasn’t until Thanksgiving when I had a cheat meal with lots of gluten and dairy that my milk production increased. This prompted me to increase my carbohydrate intake by incorporating more sweet potatoes and dairy into my diet, but my milk supply never reached 100%.

After taking a shower, I noticed that I had developed ankle cuffs. I couldn’t believe it—now I had cankles too? My legs appeared significantly larger, and although I wanted to work out, the pain prevented me from doing so. I did not take any photos with the ankle cuffs. In fact, I really avoided having photos of my body taken.

Around six months postpartum, I became deeply concerned. I noticed that my brain wasn’t functioning properly, and I wondered if this was what they referred to as “Mom brain.” Despite nursing, I wasn’t losing weight as expected. I was told that breastfeeding would cause the weight to melt off, but that wasn’t the case for me. I hadn’t lost any since they first week post-partum. I dealt with pain throughout my entire body and found it increasingly difficult to get out of bed each day. Sometimes the pain was in my arms – aching pain, like when you get the flu. Sometimes the pain was in my neck and back. Additionally, I began noticing the development of lipomas all over my body, particularly in my arms and legs. The lipomas were painful, like a burning or aching pain. My baby started sleeping through the night, but I wasn’t getting restful sleep. Every morning I woke up, exhausted.

After 3 months back to work, I had to resign. I found it incredibly difficult to do my job. The stress we went through to protect my nephew, was weighing on me. The brain fog was THICK. Getting up and getting myself and the kids out the door to daycare was too much for me. I was in incredible pain.

Frustrated and desperate for answers, I scheduled an appointment with my primary care physician (PCP) and presented her with a long list of symptoms. However, when I mentioned the severe fatigue, she casually remarked that some people experience such extreme fatigue that they can’t even get out of bed. Since I was able to care for my baby and four-year-old, she believed my fatigue wasn’t severe, just hormones. Eventually, she diagnosed me with plantar fasciitis and ordered lab tests. Surprisingly, the lab results came back normal, and everything was attributed to postpartum hormones. She did not have answers why I was developing lipomas all over my body and suggested a supplement made from raspberries that balances hormones.

It wasn’t until one year postpartum that a life-changing moment occurred. I stumbled upon a post in a Mom Facebook group where a woman shared her diagnosis of Lipedema and included her photos. This single post resonated with me deeply. I recognized those legs, arms, and stomach – they looked like mine.

Following that, I joined a few Lipedema Facebook groups, and it was in one of those groups that I came across a post from a woman who was in a similar situation as me. She was dedicated to intense training, yet her legs showed no signs of improvement. Although some women with more advanced Lipedema praised her legs and dismissed the possibility of her having the condition, it sparked doubt in me regarding my own diagnosis. This revelation is one of the reasons why I’m sharing my story—women with Stage 1 Lipedema are rarely diagnosed.

One of the symptoms of Lipedema is painful fat. At that time, I wasn’t certain if I had painful fat. I know I did not in the past. During that time I was experiencing a great deal of pain, but I didn’t feel it when pressed, unlike the other women. I did, however, notice that my arms had been aching throughout the year, but I couldn’t recall feeling the same pain in my legs. My hips hurt laying on my sides. Nevertheless, my legs felt incredibly heavy, and climbing stairs became increasingly challenging. It even hurt to lift my arms up to do my hair.

Then another big change happened. Through the supportive Facebook communities, I learned how to analyze my raw genetic data. During this process, I discovered a genetic variant called A-Typical Buche, aka Butyrylcholinesterase Deficiency – which I elaborated on in more detail in this post here.

In essence, this variant made me more sensitive to pesticides, herbicides, and the toxic alkaloids found in nightshade vegetables. My body has difficulty detoxing and clearing these toxins from my body. By eliminating nightshades from my diet, I began to feel significantly better. However, I decided to test myself by reintroducing these foods, and the following day I experienced agonizing pain. That’s when I realized that I did indeed have painful fat and more. Sometimes, you don’t truly understand how bad you’ve been feeling until you experience a sense of relief.

Nightshade foods were also responsible for causing severe back and neck pain, brain fog, headaches, and a neurological pain that encompassed my entire body.

With the reduction in pain, I was finally able to start exercising. I purchased a rebounder, as it was recommended for Lipedema patients, and began with just 10 minutes, gradually working my way up to 30. Alongside exercise, I followed a ketogenic diet, with the exception of dairy and nightshades. This enabled me to get very close to my pre-pregnancy weight, and I got down to 170, but it didn’t last long after switching to low-carb. Even though I made it to my pre-pregnancy weight, I was unable to fit into my pre-pregnancy pants, bras, and shirts. I was always told, after you stop breastfeeding your breasts will shrink. Nope, I was still a DDD.

While we continued to strive for another baby, we faced two miscarriages over the next two years. With each miscarriage, I gained 10 pounds that I couldn’t seem to lose. These weight fluctuations were solely due to hormonal changes caused by the miscarriages, as I made no alterations to my diet. The thought of undergoing another IVF egg retrieval was daunting, considering Lipedema, EDS, and Butyrylcholinesterase Deficiency are genetic conditions. Passing on these disorders was something I desperately wanted to avoid. Adoption wasn’t the right fit for us either as we had already been through that. Luckily, there was another option.

In my next post I explain how I was able to find a knowledgeable doctor to diagnose me and what happened after pregnancy #2.

NEXT: Part 5 – Finding a Diagnosis

Lipedema Story – The Healing Blossom

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