The Mysteries of the Lymphatic System (and how solving them could help more chronic disorders)

Written By: Amanda Henderson, October 18, 2023

Diagram of the latest lymphatic system map

I'm not a medical professional- this blog is intended to provide experience and information in hopes of helping others. It is not medical advice.

The lymphatic system, itself, is pretty common knowledge. We've heard of people having lymphedema or a cancer that has spread to the lymph nodes. Many of us have even had part of it removed if we've had our tonsils and adenoid out. There's actually a whole lot going on within that system that is new and upcoming information, and medicine is researching and learning more about it and how it relates to neurologic and chronic illness. Brain 'glymphatics', which are a relatively new discovery, play an important role in the body's immune defenses, as well. Science is learning more about them even as I type this blog. Unlocking these many mysteries can have surprising effects on many parts of an under-functioning body.

So, what is the lymphatic system and what does it do? It's a system of organs, vessels, and tissues that work together to remove waste from your body. It's connected to the venous circulatory system, and they work in tandem to keep your body running smoothly. Much of the tiny vessels sit right under the skin and require movement to keep it flowing through capillaries and ultimately into the larger ducts and then, into the bloodstream. From kicking out toxins and cancers to making white cells that attack infections and germs, this system is of vital importance to keep you from getting sick and staying in tip-top form. It also helps maintain normal fluid levels within the body, and absorbs fats and fat-soluble vitamins that will find their way into the bloodstream to be used properly. Recently, they've discovered this system is much more involved than they originally believed, running through more areas of the body and even deeper within the body. As they make these discoveries and find new ways to make it work best, they are acknowledging the possibilities for helping chronic illness when focusing on this system could be endless.

Let's look into the effects of a poorly functioning lymphatic system. Here are some symptoms: fatigue, swelling, pain, limb heaviness, and this is where it gets tricky... while the symptoms of lymphedema are widely known in the medical community, but what happens to a body that simply doesn't utilize its own fluids properly? Is there even a medical term for that, yet? There are many symptoms that can cross over from lymphedema, connective tissue diseases, neurological diseases, certain cancers, surgical problems, or even searching through alternative therapies for lymphedema that can help find some clues that lead to proper handling of your condition. Treatments can bring healing and help to resolve fatigue, headaches, over-weight problems, chronic dehydration, blood pressure issues, poor immunity, pain and inflammation, skin issues, and a myriad of other health problems as they dive deeper into the puzzle.

Lymphedema is pretty well known, medically, and is an acute problem of the lymphatic system. When the system isn't draining for many different reasons- cancer, blockages, surgery and/or scar tissue interference, trauma from accidents, genetics, etc, it can pool fluids in an area or limb that swell and can become infected and even necrotic. Obviously, something needs to be done to fix this so the person doesn't lose a limb or become severely ill (ever heard of elephantiasis? Ouch!). Treatments have been developed over the years to help these patients, but there is so much more that is needed to be discovered for the lesser known issues that develop from more chronic disruption of the lymphatic system.

Lipedema is another problem with the lymphatic system that is not common knowledge. It is a connective tissue disease (See why I brought this up? EDS, also a connective tissue disease!) and it effects the lymphatic system. About half of patients who have been diagnosed with lipedema have EDS or some other connective tissue disease. It is currently being studied and is in the infant stages of medical discovery. It generally doesn't even have diagnostic codes (the codes needed for insurance to pay for treatments). Once a patient is diagnosed by a specialized doctor, they often have many more hoops to go through to get the treatment they need, and often have to pay much more out of pocket, as well. In my own experience, there aren't any doctors in the whole midwest that even know what lipedema is let alone how to treat it. That shows how brand-new this information is.

So, what is lipedema and how is it treated? I mentioned earlier that the lymphatic system absorbs fats. As it works with fats, and there is a connective tissue issue, somehow (and they don't know how, yet) the lymph fluids and the fat cells combine and create a different kind of fat that is harder, nodular, and more painful than regular fat. It gathers in the body in a different way- usually in thighs and buttocks- and as it gathers further down legs and arms, it spares the wrists/hands and ankles/feet. It doesn't go away easily, either. Patients report dieting and exercising to no avail- that fat will not go away under any normal conditions. They have found some relief with special liposuction, which insurance often does not cover, or bariatric surgeries. There are also an array of less invasive treatments that can be helpful, but it can still be difficult to live with. Movement is necessary and certain exercise can help get the lymphatic system moving. Certain diets can be of use, compression garments, some herbs and supplements are being looked into that may help, Lymphatic Drainage Massage (LDM) which is also known as Manual Lymphatic Drainage (MLD), Complex Decongestive Therapy, Pneumatic Compression Devices (PCD), movement or exercise in a warm pool, and hopefully, a whole lot more as they learn more.

Now that we've covered much of the medical knowledge surrounding the lymphatic system, what happens when we fall between the cracks of diagnostic criteria but desperately need more help than modern western medicine is helping us with? We often find ourselves down lots of different rabbit holes in an effort to alleviate some of the issues that keep us from be capable of living normal, productive, well-adjusted lives with families and friends and all the trimmings. This is one reason we need more information that looks at the body as a whole. For example, when I put all of my symptoms together and look deeper into the mystery of what makes all of them occur, a bigger picture emerges that includes the vascular and the gastrointestinal systems. When I look into it further and add the lymphatic system piece, a much clearer picture emerges. My body had responded well to specialized Physical Therapy that was tailored to me and all of my maladies, and it spurred me forward to search for more that would help me move forward, physically, rather than continually deteriorate. I was curious about lipedema after researching it, but after running into dead ends, I finally found an Occupational Therapist who helped evaluate me and introduced treatments that, if helpful, would point to a dysfunctional lymphatic system, regardless of the diagnosis. MLD (Manual Lymphatic Drainage) has helped me in the following ways: lower overall pain levels, less fatigue and brain fog, feeling more hydrated, BP/HR consistently improved, less headaches, improved GI symptoms (constipation, stomach pain, slow transit, etc), around five pounds (water) weight loss, legs feel lighter and more agile (they usually feel like they're filled with sand and I'm dragging them around due to neurological damage), I can feel my major joints from the inside out (which is sometimes painful, but an interesting feeling, regardless), less itchy skin, clothes fit more loosely and I can feel the clothing touch my skin on my legs (more neurological involvement). Still, others have had help with post-surgery complications, cancer treatment complications, injury treatment, sinus infections and sleep apnea, fibromyalgia, and generally feeling unwell as it can be detoxifying.

I've figured out that my connective tissue issues have lead to medical problems that may not necessarily have proven medical diagnoses and treatments for.. or I should say more of them, in addition to the hEDS. It seems my lymphatic system is as stymied as my venous and GI systems. This has also lead to more questions, such as why is my body full of fluid that doesn't move adequately yet is also chronically dehydrated to the point I need up to 4 saline IVs per week? If I don't have lymphedema, cancer, surgical issues, fibromyalgia, or a major neurological disorder, how is the treatment working so well for me? What exactly is happening (or not happening) between all of my hollow organs and veins? Is a malfunctioning lymphatic system why my GI doctor can't find a treatment for my GI symptoms, or even more accurate diagnoses? Am I going to see enough improvement with MLD that my colon will function better and I won't need to have it removed? In the meantime, I'm grateful to have found this treatment as I feel it's a big piece of the whole puzzle for me, and look forward to finding out more about the lymphatic system and all of its mysteries as they unfold. I'm keeping a close eye on the researchers who are on the forefront, such as those who have developed Indocyanine Green (ICG) lymphography in Australia that helps visualize the lymphatic system within the body, those who are looking into brain glymphatics and studying it in relation to neurological disease such as Alzheimers, and doctors and facilities that are looking into new ways to find treatments for dysfunction of the lymphatic system, such as the Foeldi Clinic in Germany, Cleveland Clinic, and Total Lipedema Care, to name a few.

The lymphatic system is a widely underrated area of medicine. The relief so many patients have experienced once they have had appropriate diagnosis and treatment for any issues involving it can be profound. As many chronic illness patients have experienced, it can be time consuming and energetically exhausting to search for proper medical care, but when we learn from each other and find new ways to look at the body as a whole, we can possibly find relief from some of our symptoms and solve some of the mysteries that keep us from feeling functional.