Lipedema, often referred to as the “painful fat disease” is frequently unrecognized, undiagnosed or mistaken for other concerns such as non-lipedemic obesity, fibromyalgia, or Lymphedema. This loose connective tissue disorder1 is seen almost exclusively in females, and some specialists, such as Dr Paula Stewart, have postulated that it is a genetic expression of the desirable survival traits for early humans, a “mother of the species” image such as is often seen in ancient fertility symbols. The fat distribution, in general noted to be symmetrical and bilateral and usually concentrated in the legs, hips and buttocks, is a characteristic look noted in these ancient depictions and sacred objects. Interestingly, metabolic disease is not usually associated with this condition. Although it does frequently, but not always, progress to obesity, these patients generally do not have associated high blood pressure, high lipids or type II diabetes, but they often do have other connective disorders such as hypermobility.
Women with Lipedema may have a constellation of concerns including easy bruising, hypersensitivity to touch, nodules in the fat tissue that are sore and cause a rippled appearance and weight gain that is not responsive to traditional dieting. Uncontrolled and undiagnosed Lipedema may lead to Lymphedema. Other challenges that may be associated with connective tissue abnormalities including joint pain, overactive immune response known as Mast Cell Activation Syndrome (MCAS) and autonomic dysregulation known as Postural Orthostatic Tachycardia Syndrome (POTS) can also be present. These various concerns make treatment and self-management extra tricky.
Interestingly, Lipedema is often exacerbated at times of hormone change such as puberty, pregnancy or menopause, and seems to be inherited. Recently, a gene has been identified that has to do with progesterone regulation and is implicated as a potential instrument the development of Lipedema. More research results around this are surely imminent.
What is it about Lipedema that leads to so much pain? While not fully clear, there are factors that are suggestive.
Imaging studies and tissue samples are showing that there is indeed a difference in the lymphatic and tissue structures beyond the external appearance and this is key to learning more about the causes of pain and dysfunction. Some things we do know include that edema in any setting is often painful. Lymphatic fluid is associated with inflammation, which is great for healing an acute illness or injury but is irritating to our systems and the delicate nerve structures upon which it puts pressure when it is unresolved. The extra fluid, even if not associated with increased fat buildup, is heavy and wearing on the joint structure. The fluid is extra work for the vascular and lymphatic systems (arguably one system which can be discussed in a future article), and that can be generally fatiguing. When we are fatigued, we tend to be more susceptible to pain. In an article published in 2021, pain in lipedema is reported to be likely due to overactive signaling of the sympathetic nervous system and triggered by hormonal and genetic factors2.
These challenges to a general sense of wellbeing have a mental health impact. There is a high incidence of depression and anxiety among these patients as a result of the pain, fatigue, body image and sense of no clear management strategy if they are even lucky enough to get a diagnosis. A researcher at an international conference a few years ago basically shouted at a lipedema patient that she should simply accept the fact that she is fat! Later that day, another presentation showed images of normal obesity fat samples next to those of lipedema patients, and there was a very clear difference. But that awareness will take a long time to be noted and accepted in the national and international medical communities.
There are no known medications specific to treatment of lipedema so medical management is focused on reducing pain, inflammation, fibrosis and edema. Patients with lipedema should consider if any of the medications that they may be taking for other conditions tend to increase edema as this can worsen the symptoms, and diuretics are potentially exacerbating as they do not address inflammation and may make it more difficult for the lymphatic system to process the proinflammatory proteins that can create a viscous cycle and possibly lead to the development of a secondary lymphedema, known as Lipo-lymphedema, in these patients.
So, in the meantime, we must manage Lipedema with compassion and without judgement and simply address the fact that all persons deserve to have the best possible quality of life. My job as I see it is to be an advocate in addition to my hands-on interventions and to offer ideas and strategies to patients that will help them reduce pain and increase function. I seek to offer ideas and resources to connections that may assist with diet, exercise and mental health support as well as daily self-management strategies such as compression garments, skin care and tools for home use including Sequential Pneumatic Compression Devices (PCD) like our AIROS pumps.
As a Certified Lymphedema Therapist (CLT) with advanced credentials, for the last 5 years, I have been working as a medical massage therapist in an integrative health center treating patients with chronic pain and chronic illness. These people are often challenged by high pain associated with chronic conditions including hypermobility disorders such as the diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS). Over time, I started to notice that the hEDS women I treat often present with the characteristic Lipedema fat distribution. And about that same time, there started to be a recognition in the world of vascular and lymphatic therapies that these conditions do indeed have some correlation.
I recently wrote and presented a case report on one patient who originally came to me knowing she and her family members had hEDS. She had been living with a high level of pain, easy bruising, chronic inflammation, fatigue and digestive difficulties, and she sought my services after an emergency colon surgery had led to lymphedema in her lower legs. After we got her post-surgical leg swelling reduced and managed, we started to notice that she had other features that suggested that her lymphatic disorder was more systemic. With this recognition and involving an integrative team including massage therapy, physical therapy and a pain-focused psychology, this patient learned to manage anxiety related to her diagnoses and daily physical challenges, and to find strategies to reduce pain, exercise effectively and to use compression to support her sense of well-being. She obtained a Sequential Pneumatic Compression Device, like the AIROS 6 or 8 and uses it daily. She receives care from me or another certified massage therapist regularly. Eventually, she even engaged in surgery to remove some of the excess fat tissue. This specialized liposuction was done by a surgeon trained in and utilizing techniques that are specific to address her condition and, so far, has resulted in a much higher quality of life with less pain and increased function. Not only is she happier with the way she looks but she truly has more stamina for the things she loves to do and is now able to reap other benefits from massage and Manual Lymphatic Drainage (MLD) than simply managing pain and reducing edema.
In my role as a medical massage therapist, I am not promoting surgery as a method that is appropriate for most patients. Many may find the cost prohibitive, that their insurance does not see this as a wellness option but merely cosmetic, and that the time to recuperate is not available to them. My job is to try to figure out everything I can do with my hands and my knowledge as a Certified Lymphedema Therapist (CLT) to help my patients maximize their quality of life. And massage is one of the very wonderful tools that we can offer, which is non-invasive, does not require medication to be delivered, and has a variety of effects that can be pain reducing in the short and long term.
As massage therapy is an out of pocket expense that is not in the daily budget for most, the PCD therapy can be available to them on demand, daily, at home. In addition to the compression garments that massage and support the tissues while the patient is active, and to the education that a qualified lymphatic therapy specialist can offer, we try to support the very best quality of life that those living with lipedema, as with any other chronic condition, can achieve.
- Herbst KL, Kahn LA, Iker E, Ehrlich C, Wright T, McHutchison L, Schwartz J, Sleigh M, Donahue PM, Lisson KH, Faris T, Miller J, Lontok E, Schwartz MS, Dean SM, Bartholomew JR, Armour P, Correa-Perez M, Pennings N, Wallace EL, Larson E. Standard of care for lipedema in the United States. Phlebology. 2021 Dec;36(10):779-796. doi: 10.1177/02683555211015887. Epub 2021 May 28. PMID: 34049453; PMCID: PMC8652358.
- Aksoy H, Karadag AS, Wollina U. Cause and management of lipedema-associated pain. Dermatol Ther. 2021 Jan;34(1):e14364. doi: 10.1111/dth.14364. Epub 2020 Oct 12. PMID: 33001552.