Read Part 1 here
The Unthinkable Happened
Then the unthinkable happened. One day a coworker stopped Carol to say she had something running down the back of her leg & on her pants. In fact, it was on both legs. She had developed wounds and didn’t know it. She went to a wound care clinic who told her something she had never heard: You have lymphedema. She went to a lymphedema therapist who provided massage and compression bandaging. At the end of treatment, Carol was fit with custom, flat-knit compression hose. However, because of the unusual leg shape common to Lipedema (a condition she wasn’t yet aware of), the hose bunched around her ankle & caused pain. So, the foot of the hose was removed under the manufacturer’s warranty, and she wore compression from her ankle to her knee. At the time, her shoes seemed to provide enough compression for her feet. Her wounds had healed, and she loved her compression.
Ankle cuff causing hose to bunch
She wore her hose until they began to fall apart. Carol needed new compression but her former therapist wasn’t available. Not having any help, she searched the web and found hose she thought would work. But she didn’t know anything about compression sizing, strength, what gradient pressure was – in short, she didn’t have guidance and the compression she bought didn’t work. Her legs got bigger, and she was worried she would end up with wounds again. She began looking online for help and came across me.
Symptoms of lipedema
When I met Carol, I immediately recognized her leg shape as suspect for lipolymphedema (lipedema and lymphedema). Her legs were grossly symmetrical (meaning both legs looked about the same) and her feet were swollen but smaller. She had a definitive cuff around her ankle and while she was likely obese, there was more to her appearance than that. I asked Carol if she had ever been diagnosed with lipedema. She had never heard of the condition. I asked a few questions about her family and medical history.
She was very healthy and had no heart or kidney issues. At some point, though, a doctor had put her on diuretics. The diuretics helped for at time & then seemed to stop working. While she didn’t feel she ever bruised easily, during her evaluation, I noticed a bruise on the back of her leg that she wasn’t aware of (and she denied using a blood thinner). In fact, she didn’t take any medications other than one for her thyroid. She also denied feeling hypersensitive but had never really paid attention (her legs were hypersensitive to mild touch during our assessment). She had knee & hip pain (a common characteristic in lipedema due to stress put on the joints). The arthritis had become so bad, she had to start using a walker. She cried as she told me about the first day she went to work with the device. In Carol’s mind, a walker was something “old people” use. As we talked about her family history, something stood out. At first, she said her mom had always been tiny, but later she mentioned her being diagnosed with elephantiasis (stage III of lymphedema) after the birth of Carol’s sibling. (It’s highly unlikely her mom went from tiny to elephantiasis after childbirth. She likely had swelling for years but, as a child, Carol just hadn’t noticed.) Carol was always hyper-flexible (a trait some people with lipedema have), and she struggled with her weight since adolescence (a time of hormonal change).
Carol’s sister happened to be visiting during the evaluation. She told me all of their siblings had leg swelling and used compression now, but no one had as much swelling as Carol. Not only was she physically declining, but she was worried about her sister’s emotional & psychological health. Carol was a people-person but since Covid, she had been confined to her home. She became depressed. Carol spoke up, “but I’m ready for change. I woke up one day with an epiphany that I needed to make a change. That’s when I started looking for help and found you.”
Learning about lipedema
After the evaluation, I sent Carol a link to a doctor who specializes in lipedema named Karen Herbst. I also sent a link to the Lipedema Project film entitled, The Disease They Call Fat and asked her to see if it resonated. When I saw her the next session, she said she could absolutely relate. She had never heard of lipedema before. How come no one ever told her? I explained lymphedema isn’t well-know but medical professionals are becoming more aware of the term. Lipedema, however, is even less well-known. And it’s one of the causes of secondary lymphedema.
For more information about lipedema, visit the following links: Dr. Karen Herbst, Lipedema Foundation, The Lipedema Project, the Fat Disorders Resource Society, National Center for Advancing Translational Sciences and this article in the Plastics and Reconstructive Surgery Journal.
To be continued 7/03/21.