Many people believe that once you are finally diagnosed with Lipedema or even Lymphedema you finally have an answer to all your medical issues. However, that is not always, and in fact, is probably not the case at all. Those of us familiar with Lipedema may also have a secondary condition of Lymphedema, which we call Lipo-Lymphedema.
When it comes to Lipedema you will frequently find you have other signs and symptoms that do not match the traditional Lipedema symptoms. These can be explained by some of the other conditions that seem to run hand-in-hand, or are comorbid, with those suffering from Lipedema. Not everyone will experience the same subset of conditions and diseases to their primary Lipedema condition, but some of the comorbidities may be more common than others.
We have yet to identify what causes Lipedema but there are some underlying theories and connectors that researchers are on the trail to trying to figure out. During my time doing research, participating in many chronic illness social media groups and talking with various healthcare professionals I have seen several of these comorbid conditions.
Since collagen runs through 80% of body and is a main contributor to Lipedema, it’s easy to see how it can have a widespread effect on our bodies. According to Dr. Afrin, author of Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity, “do you really think there are 57 different things wrong with your patient, or maybe just a couple underlying systemic conditions that might explain it all?” We will explore this important condition later in our page on Mast Cell Activation Disorders (MCAD).
I am sure there are more comorbidities and as they are identified I will update this list.
Semi-common Comorbidities (Unofficial)
Here is an unofficial list of semi-common comorbidities I have noticed with those who have a primary a Lipedema condition:
Chronic Pain of ALL kinds
Mood disorders, especially anxiety and depression
Thyroid issues (high and low, often auto-immune despite normal TSH “levels”)
Arthritis of all kinds, especially Osteoarthritis in hips, knees, and hands, but RA common also
Celiac disease and all forms of gluten sensitivity (accompanying malabsorption and malnutrition and nutritional deficiencies despite diet and even supplementation sometimes.)
Irritable Bowel Syndrome (IBS) & proclivity toward constipation, but with quick flips to diarrhea (likely food allergies/MCAD)
GERD (weak hiatal sphincters and MCAD can contribute here – the stomach produces acid in resopnse to histamine from food reactions)
Hiatal hernia (stomach to esophagus sphincter) and all other forms of hernias just about anywhere (inguinal, duodenal, abdominal, etc.)
Chondromalacia (cartilage loss) of all kinds, especially patellae (loss of cartilage in the knees, but can occur elsewhere, e.g. hips)
Striae aka “stretch marks” (i.e. not always associated with pregnancy!)
Hair loss early, and even in women, especially those with signs of MCAD or iron imbalances
Skin tears or rips, trouble suturing, would dehiscence (trouble healing post surgery, especially soft inner tissues)
As you can hopefully see there are a wide range of effects on your system from having faulty collagen. The one comorbidity that stands out among the list is MCAD, which my opinion, could the be the underlying catalyst for many of the conditions or syndromes listed above. A thyroid condition could also explain several of the comorbidities too.
Dr. Afrin further elaborates the difficulty in diagnosing an underlying systemic condition using Western medical practices. Western medicine focuses on individual sub-systems of the human body, such as the heart, circulatory system, digestive, hormonal, reproductive systems, etc. The problem with this myopic view is it does not take into account each of the systems are interconnected and interrelated when considering diseases and conditions. This can be seen in his use of the four blind men and an elephant fable reference he makes in the following quote.
What I have found extremely helpful is seeking out and working with a functional medicine doctor in conjunction with my traditional medical team. A functional medicine doctor looks at the body from a holistic viewpoint, each system interrelated, with both mind and body working together in harmony, or disharmony in our situation. This is the bridge Dr. Afrin is trying to build by suggesting mast cells could be the culprit behind several system problems we may be experiencing instead of 57 different ones.
Several people also find comfort and a degree of healing from seeing a Naturopath or Doctor of Osteopathy. Even if they cannot heal all your problems, they may be helpful in working with you to identify topics of discussion with your conventional medical doctor. I must add a caveat to not stop seeing your conventional medical doctor if you are being treated for a critical condition that requires life-saving treatment! I can only express there are options to getting care for your symptoms or conditions by seeking out additional types of medical professionals.
I realize this list can seem overwhelming and so can all your symptoms once you start listing them out. Some of them are more forefront than others, which are the ones you need to or are already working to mitigate. Bring your list to your doctor’s office and start working towards a diagnosis and treatment plan. Be patient with your doctor as they may be overwhelmed with both your list and trying to understand Lipedema or Lipo-Lymphedema. It would be helpful to bring a web page printout or the book “Lipedema: The Disease They Call Fat” for their education. (I bought the book for my doctor as he had no knowledge about this disease! I really appreciate that he is open to discussing and researching diseases where he has no knowledge so he can help his patients!)
I personally have several of the comorbidities listed above along with my primary Lipo-Lymphedema condition. While I explore further treatments I am changing the things I know will help me. I am changing my diet (low histamine, low carbohydrate, anti-inflammatory and gluten-free), taking H1 and H2 blockers for MCAD mitigation, doing limited exercises to build my core muscles and taking vitamin supplements for areas I am documented deficient or to relieve specific symptoms. By making these changes I have been able to lower my inflammation and pain levels to a point where I take opioid medications only as needed, which is significantly less than before making these changes.
I welcome input and feedback from others with Lipedema and other diagnosed comorbid conditions too! I would also love to hear if you were helped by a functional medicine doctor, a Naturopath, a Doctor of Osteopathy or other trained medical professional.
To Your Improved Health!
Note: I would personally like to thank my good friend, Jan Groh of OhTwist.com, for her contribution to this list and for educating me on Ehlers Danlos Syndrome and Mast Cell Activation Disorders, two of the main conditions that have changed her life forever.