Lymphedema and Lipedema are important topics that receive too little attention.
- please have a visit to some of the websites listed below that offer extensive info.
- lipedema (lipoedema) can easily be missed as a diagnosis when people are dealing with weight gain.
- there are some anecdotal reports among people living with lipedema that many (not all) have found a low carb or ketogenic eating pattern to be very helpful, as one part of a comprehensive approach. As with everything, response and “worthwhile-iness” will vary.
Please see below for links to an online accredited Medical CME Program and to a Best Practice Guidelines: The Management of Lipoedema.
Scroll to bottom for an excellent video on lipedema and Dercum’s Disease, starting with an approach to the assessment of swollen legs. There is also a video on how to perform Self Manual Lymphatic Drainage.
Lipedema is one of a group of medical conditions referred to as Subcutaneous Adipose Tissue Disorders (SAT) or Adipose Tissue Disorders (ATDs). This group also includes:
- Dercum’s Disease
- Familial Multiple Lipomatosis (FML)
- Madelung’s Disease, also known as Multiple Symmetric Lipomatosis
- the term Adiposis Dolorosa (painful fat) is also used, but this term is not a formal diagnostic term in the current classifications. Its use is now most associated with Dercum’s Disease, but also has been used as an alternate term for Lipedema.
For more information about this group of disorders:
- website of Dr. Karen L. Herbst, Ph.D., M.D. www.lipomadoc.org
Dr. Herbst specializes in disorders of subcutaneous adipose tissue. She runs a research and treatment project at the University of Arizona at Tucson, and has a private clinic.
- the Fat Disorders Research Society www.fatdisorders.org
Among much information and many other resources, they:
– Offer an online video-based accredited medical CME program
– Have an extensive list of videos.
Quoting part of a description on The Lipedema Project site: LINK
- Lipedema’s trademark is the excess deposition and expansion of fat cells in an abnormal and particular pattern in the legs. There is usually bilateral and symmetrical (both legs, fairly even) swelling of the legs and hips extending from the waist to the ankles, with the fat forming a ring or cuff just above the ankle. The feet are usually unaffected. Lipedema may occur in the upper arms as well.
- Lipedema occurs almost exclusively in women. There are a few rare cases where lipedema has been diagnosed in men.
- Lipedema fat is resistant to diet and exercise. Although diet and exercise can help both pain and mobility, they are unlikely to change the disproportionate size of the legs or arms for lipedema patients in any significant way.
- Lipedema can occur in women of all sizes, ranging from seriously underweight to morbidly obese. Being thin is not a guarantee that someone does not have lipedema.
- Lipedema seems to have a genetic component. In some families it is inherited through a maternal lineage, so a grandmother, mother, and daughter might all have lipedema. Males can be carriers, so daughters can also inherit from a paternal lineage.
- Lipedema is thought to be affected by hormones. Some women see the first signs of lipedema around puberty. Others first show symptoms around pregnancy or perimenopause. Cases of lipedema have also appeared following gynecological surgery or after major trauma or surgery. These triggers are predominantly periods of major stress and/or high hormonal disturbance.
- Lipedema is more common than you think. Estimates of the incidence of lipedema vary widely, ranging as high as 11% of the post-puberty female population. That would mean close to 17 million women in the United States alone, and as many as 350 million women worldwide.
*** Best Practices Guidelines: The Management of Lipoedema LINK
Published by Wounds UK, 2017
“Lipedema and Obesity” basic info brief summary Lipedema_and_Obesity_Herbst
Article by Dr. Karen Herbst on the Obesity Action Network blog.
A lipedema over-view, on the Fat Disorders Research Society blog
Lipedema: A Relatively Common Disease With Extremely Common Misconceptions Full Text
“Lipedema, or adiposis dolorosa, is a common adipose tissue disorder that is believed to affect nearly 11% of adult women worldwide.”
See also this page about the potential link between type 2 diabetes and dysfunction of the lymphatic system: Diabetes – Lymphatics
British Columbia Lymphedema Association (BCLA) www.bclymph.org
Find out which local medical specialists have expertise in the management of these conditions. Offers other resources and support, including a newsletter and list of other contacts, such as practitioners offering manual lymphatic drainage and compression garment fitting.
Lipedema Network Canada lipedemanetworkcanada.com
Lipedema Alberta lipedemaalberta.ca
Lymphatic Education and Research Network www.lymphaticnetwork.org
National Lymphedema Network www.lymphnet.org
The Lipedema Project http://lipedemaproject.org
Lipoedema UK lipoedema.co.uk
Lipoedema Australia Support Society lass.org.au
Cure Lipedema curelipedema.org
Lymphology Association of North America (LANA) www.clt-lana.org
Klose Lymphedema Training www.klosetraining.com
Much information, including a DVD that can be purchased with instructions for doing manual lymph drainage yourself. (See also video below on this page.)
Blog by Joachim Zuther on Lymphedema www.lymphedemablog.com
Extensive information. Many articles and videos.
About Possible Benefits of a Low Carb or Ketogenic Eating Pattern
(1) Lipedema and Keto Summit 2017 LINK
I list this here to indicate the degree of interest in this topic, not to specifically suggest that you should purchase the series. This was a very informative webinar series, first available in the spring of 2017. It has twice been available for free, but (at this time) now is available for purchase. Over-all the content is excellent, but with so many interviews with people of different backgrounds, there are some points I would not agree with. Like all general educational content online, what really matters is to talk to your health care practitioner about what you learn and what might be useful things for you to try in your unique circumstances.
(2) Article: A New Look at Lymphedema and Obesity: Breaking the Cycle
A two-part article by Leslyn Keith, MS. OTR/L, CLT-LANA
The Role of Breath:
(1) From an article by Joachim Zuther, from his extensive website, Dec 30/15 LINK
“The Benefits of Abdominal Breathing Exercises in the Management of Lymphedema”
“Abdominal (diaphragmatic) breathing exercises are a valuable tool in stimulating deep lymphatic structures, such as the cisterna chyli (13), the abdominal part of the thoracic duct (14), lumbar trunks (11) and lumbar lymph nodes, pelvic lymph nodes, and certain organ systems.
Stimulation of these deep lymphatic structures, in particular the thoracic duct (the largest lymph vessel in the body), accelerates the transport of lymph fluid toward the venous angles (15), through which the lymph fluid is returned into the blood circulatory system.”
(2) When doing intentional breath work – please be careful not to over-breath. If you are resting, especially if sitting or lying down, you don’t need a high volume of breath going in and out each moment. If you start to feel light-headed or dizzy, please stop intentionally controlling your breath and just let your body control your breath as it wants.
A general good tip is to take a pause after each breath out, and pay attention to when your body wants to start the next breath in again. So that pattern would be:
- a slow breath in
- without deliberately holding your breath in, let that full breath in come to a crest like the rounded top of a wave, and gently transition into a slow breath out
- generally, a favourable pattern is to have the out breath be longer than the in breath
- as you come to the end of the breath out, pay attention to your body’s signals. At rest, you don’t need a high volume of breath in a minute, so if you are breathing deeply, you don’t need to breath as often. Be prepared to let your body just rest calmly and start the next in breath when your body wants to.
- if at any moment you feel you are starting to fight your body, or your feel stress, light-headed or dizzy or just out-of-sorts, let go of being intentionally in control of your breath. Just let go of forcing any pattern on your breath and let your body’s natural breath control take over.
- initially, keep to just a few minutes of intentional breath control and see how you do. You could make your practice a bit longer as you become more experienced and confident.
Video: Lipedema and Dercum’s Disease Primer
Notes: (1) there are some interesting comments on diet and on supplements. Any recommendations regarding these need to be highly tailored to the individual and their circumstances and responses.
(2) the medications Dr. John Bartholomew lists to consider as a possible cause or contributing factor to swollen legs include:
- calcium channel blockers (nifedipine and amlodipine)
- NSAIDs – non-steroidal anti-inflammatory medications, such as ibuprofen
- certain medications for type 2 diabetes, such as pioglitazone (Actos)
- corticosteroids (e.g. prednisone)
- pregabalin (Lyrica) and Neurontin (gabapentin)
- estrogens and oral contraceptives
- MAO (monoamine oxidase) inhibitors and tricyclic antidepressants
This is not a complete list, please talk to your doctor and pharmacist about any concerns. Not everyone on any one of these medications will respond with swelling and these medications can also be used to great benefit by someone with leg swelling, depending on individual medical needs and responses.
Video: How to Perform Self Manual Lymphatic Drainage (MLD)
Image Credit (feature image at top of lower legs): Cure Lipedema