3 Signs Your Painful Fat Might Not Be Lipedema

[00:00:00]You probably already know what lipedema is. [music] You know the heavy aching legs, you know the easy bruising, you know the frustration of dealing with fat that simply will not respond to diet or exercise. But what if your painful fat is acting differently? What if the pain isn't just a heavy ache, but a sharp burning or stabbing sensation? What if the fat isn't just in your legs or arms, but forming distinct lumps on your [music] ribs, back, abdomen, or even on your neck? If this sounds familiar, you might not be just dealing with lipedema.

[00:00:28]You might be looking at a completely different condition [music] called Dercum's disease. Hi, my name is Dr. Lex Alexander Kolb. I'm a double board-certified plastic surgeon specializing in lipedema treatment.

[00:00:37][music] Today, we are putting lipedema and Dercum's disease side by side.

[00:00:41]Finally, why does it matter which one you have? Because treating Dercum's like lipedema can actually make you worse. If you have been diagnosed with lipedema, but feel like your symptoms just don't quite fit the mold, this video is for you. Unlike lipedema, which we know is incredibly common, but just under-diagnosed, Dercum's disease is officially classified as rare disease.

[00:01:00]The exact incidences are unknown, but it's rare enough that many doctors have never even heard of it, let alone treated a case. What is actually going wrong under the skin? We know that lipedema is essentially a fluid, connective [music] tissue, and fat problem. The tissue gets thick and highly fibrotic. The lymphatic vessels get sluggish, allowing fluid to build up. When you press on lipedema fat, it feels diffuse, like grains of rice or bag of frozen peas trapped under the skin. Dercum's disease works very differently. Instead of a generalized thickening of the fat, Dercum's disease causes your body to form distinct enclosed fatty tumors. These are called lipomas. These lipomas can range from the size of a pearl to a size of a fist.

[00:01:40]And here's the critical part. These lipomas grow inside the loose connective tissue and press directly against your nerves. This difference in how the fat forms leads to major differences in how the disease feels. Let's look at the side-by-side comparison so you can evaluate your own symptoms. Number one, where the fat is located. Lymphedema fat is highly predictable. It almost always affects both legs symmetrically. It creates that classic cuff on the ankles, usually sparing the hands and feet. If it affects the arms, it usually stops at the wrists. Dercum's disease is very chaotic. It doesn't follow the rules.

[00:02:14]While it can affect the arms and legs, these painful lipomas frequently show up on the trunk, abdomen, back, and the rib cage. It can even show up on your scalp or neck. These are areas that early stage lipedema usually ignores completely. [music] Number two, the type of pain. Lipedema pain is usually pressure-based. Your legs feel like lead weights. They ache deeply and they're incredibly tender when pressed. Dercum's pain is nerve [music] pain. Because those encapsulated lipomas are pressing directly on the nerve endings, [music] patients describe the pain as sharp, searing, stabbing, or burning. In severe cases of Dercum, the pain is so intense that even the light friction of clothing resting against the skin can be agonizing. Number three, associated [music] symptoms. If you have lipedema, you might also be extremely flexible. We see a massive overlap between lipedema and joint hypermobility syndromes. But if you have Dercum's disease, the associated symptoms are usually systemic. [music] Dercum's is heavily linked to severe brain fog, chronic fatigue, migraines, and fibromyalgia.

[00:03:15]Furthermore, while lipedema actually seems to offer some protection against metabolic issues, meaning diabetes rates are surprisingly low, Dercum's disease carries [music] a significantly higher risk for developing type two diabetes.

[00:03:26]So if you're listening to this and thinking, "Wow, this burning pain and these random lumps sound exactly like me." How do you actually get the diagnosis? First and foremost, the diagnosis for Dercum's disease is clinical [music] one. Meaning, it's based heavily on your reported symptoms and physical exam by a knowledgeable professional. Doctors look for a few core criteria to make the diagnosis.

[00:03:46]Generalized overweight or obesity, chronic severe pain in the fat tissue that has lasted for more than three months. They also look for profound weakness or fatigue, and of course, those distinct painful fatty lumps or tumors [music] called lipomas. But while your symptoms are the foundation of the diagnosis, medical imaging is evolving as a powerful additional tool. A 2021 study published in the Journal of Phlebology highlighted how imaging [music] techniques like high-resolution ultrasound and MRI are increasingly being used alongside clinical exams to support the diagnosis. These scans can reveal the general architecture of your tissue. For lipedema, imaging generally shows as a widespread thickening [music] of the fat layer along with the fluid buildup. But for Dercum's disease, the imaging tells a completely different story. The scans can pinpoint those specific distinct fatty tumors hiding under the skin, clearly separating them from the surrounding tissue. Doctors visually map out whether you're dealing with the diseased fluid [music] of lipedema or the distinct nerve-pressing lipomas of Dercum's. If you have lipedema, your management is all about decongestion. [music] You use tight medical grade compression garments, pneumatic pumps to move the fluid out of the fibrotic tissue. If you have Dercum's disease, traditional tight compression garments might cause excruciating pain because they squeeze those highly sensitive lipomas right into your nerves. Instead, Dercum's treatment focuses heavily on pain management. Doctors will frequently prescribe certain pain medications to calm the burning sensation. And surgically, if you have lipedema, we would perform widespread specialized liposuction to remove diseased fat from the whole limb. But for Dercum's, surgeon will often perform targeted [music] excisions, literally cut out those specific highly painful lipomas that are crushing your nerves. Targeted liposuction can also be used in a very few selected cases. Living with a painful fat is an exhausting battle, especially when you feel like you're fighting the wrong invisible enemy. So if your pain is burning and sharp, if you are finding a painful lumps on your torso back, and if the typical lipedema compression treatments are making your pain worse, it might be time to ask your a about Dercum's disease.

[00:05:46]>> [music] >> Getting the exact right diagnosis is the first step toward getting your life back. And let me know in the comments below. Have you been diagnosed with lipedema, but suspect you might have Dercum's? What does your pain actually feel like? Please share your story. If you suspect you might have lipedema, please know you're not alone. It's not your fault, and there are knowledgeable healthcare professionals who can help.

[00:06:06]Thanks so much for watching. I hope you found this video helpful. Please subscribe and hit the like button.