Lymphedema and Lipedema: How Do They Compare?

Podcast Transcript

Announcer:

Welcome to Love Your Heart, brought to you by Cleveland Clinic's Sydell and Arnold Miller Family Heart, Vascular and Thoracic Institute. These podcasts will help you learn more about your heart, thoracic and vascular systems, ways to stay healthy, and information about diseases and treatment options. Enjoy.

Doug Joseph, DO:

My name is Dr. Doug Joseph. I'm a vascular medicine specialist at Cleveland Clinic in the Section of Vascular Medicine.

John Bartholomew, MD:

Hello, my name's John Bartholomew. I'm a physician at the Cleveland Clinic. My specialty is vascular medicine and also hematology.

Doug Joseph, DO:

So, today we'll discuss lymphedema versus lipedema. These are conditions that we often see in vascular medicine section, and they can often be confused. Lymphedema is a condition where patients have lymphatic dysfunction as the primary problem and they develop swelling and tissue changes, and that can lead to complications and can involve the lower extremities, the upper extremities. It can be either congenital (something someone's born with), or it can be something that's caused by a secondary thing, like if they've had breast cancer surgery or radiation therapy or chemotherapy or pelvic surgery where lymph nodes have been removed or damaged.

Then lipedema, where it also can cause swelling of the limbs, either upper or lower extremities, but it generally begins as mainly adipose tissue that becomes increased in a disproportionate fashion involving the distal lower limbs or the upper arms. It usually doesn't initially cause a lot of swelling in terms of fluid accumulation, but it's more of an adipose tissue that is dysfunctional, so to speak. Adipose tissue being fat cells.

John Bartholomew, MD:

Dr. Joseph just talked to you a little bit about what lipedema is. Some people classify it as a loose connective tissue disease, and it's really found only in women. I mean, there are rare cases where it's been seen in men, but never really documented. So, these individuals have pain, so the key is painful limbs, arms, legs, it can affect the abdomen as well. It's often misdiagnosed as lymphedema, but again, the key to lipedema is that it is also known as a painful fat syndrome. The key here is that there is pain involved, so almost all have pain.

It is actually thought to be hereditary. There is a gene that has been identified or at least one gene with lipedema, but it does seem to run in families, so many times I'll ask a patient, what does your maternal or paternal grandmother look like? Or what was your mother like? Or do you have a sister that has a similar body shape?

So again, lipedema, a painful fat syndrome. Classically much of the weight is in the lower body and it can start often with hormonal changes, so puberty. Many young women will say, my body started to change during puberty or during pregnancy, or if they are on oral contraceptives or even later on in menopause. I've even had a few women say that after they had a lifestyle change, something threatening them or injury or surgery, that they will develop lipedema at that time.

Doug Joseph, DO:

Lymphedema in contrast to lipedema is typically not painful, and the tissue is more hardened and becomes fibrotic more quickly and has pitting edema associated with it and isn't associated with necessarily increased bruising. You don't have the sort of granular feeling to the fatty tissue of the limbs, and it can be asymmetrical. It can involve just one side rather than both sides, which typically lipedema is symmetrical in terms of it being in both lower extremities and both upper extremities.

Lymphedema is a little more responsive to compression therapy in terms of volume reduction using things like compression wraps and massage therapy to reduce volume of the limb. Whereas lipedema, often there's some benefit in terms of pain control, but there's less volume reduction with compression therapy.

John Bartholomew, MD:

It's painful fat. Many people will complain of a heaviness or a tightness in their limbs, they will often say that if their dog or cat jumps on their legs, it's extremely painful. If their spouse or significant other puts his hands on their legs, it's also very painful.

Patients also have generalized weakness, so it's been found that their muscle strength is not the same as, for example, a lymphedema patient, and they often have decreased mobility. Many of them have a certain gait when they're walking back and forth, and it's partly because of the size of their legs. Their legs rub together, and so they compensate by this different type of gait.

So those are just some of the symptoms that we see with lipedema, and as Dr. Joseph mentioned, it doesn't respond as well to compression garments, but it does seem in certain individuals, compression garments and intermittent pneumatic compression garments that you take home and wear at night, pump up and down in your legs, they do seem to help some with the patient's pain.

You can have a condition known as lipo-lymphedema where you have both lymphedema and lipedema, and generally the diagnosis would be made clinically. Dr. Joseph will talk about clinical findings of lymphedema. You could have a little bit of both.

Doug Joseph, DO:

You can also have Phlebolymphedema. You can have a combination of any of these things. Venous disease, lymphatic disease and lipedema definitely overlap. Especially over time, someone may initially be diagnosed, say, when they are young teenager with lipedema, and then over 10, 15 or 20 years of having lipedema, they may develop some lymphatic dysfunction along with it. It sort of as a complication of lipedema, or you could even have primary lymphedema and lipedema at the same time for sure.

But I think more commonly it's a lymphedema that can develop as a complication of longstanding lipedema. The same would be true for venous or vein congestion, having trouble draining blood from the legs and congestion of blood in the legs as a result of progressive lipedema over many years.

John Bartholomew, MD:

Lipedema is always bilateral and symmetrical, and as Dr. Joseph pointed out, you can have just one arm, or one leg involved with lymphedema. Classically the lipedema patient will have a pear-shaped body where much of their weight is in their lower half, so those are a couple features that would be different.

With lipedema, LI as I often say when I'm talking to my patients as opposed to LY, I, you have what's called the ankle cutoff sign or the wrist cutoff sign where the fat just seems to stop. It's almost like they have a rubber band around their ankle or their wrist. It's called a cuff sign.

Often patients with lipedema are hypermobile. I've seen patients that are several hundred pounds be able to take their right leg and put it behind their neck. I've seen patients of 300 pounds be able to touch their palms to the floor, and some of them also have dislocations. So, these are types of things that you would differentiate lymphedema from lipedema.

Obese women don't always have muscle weakness, but as I pointed out earlier, lipedema patients often have muscle weakness, so that would be another differentiating feature. One last thing I think Dr. Joseph mentioned, lipedema patients bruise easily, so that would be another way to differentiate whether or not you had lymphedema or lipedema.

Doug Joseph, DO:

Obesity is often more responsive to diet and exercise, they're more able to lose weight in a more standard fashion. Whereas lipedema, you are able to lose weight and you can have obesity and lipedema at the same time. The patients though with lipedema, those areas that have the lipedema, the lower legs from ankles all the way up into the abdomen can be very resistant to the weight loss efforts.

So they may be able to lose weight in say the thorax and the upper body and the neck and other areas, but the areas that you really want to reduce the size of because of it causing disability and difficulty with walking and things like that may be very resistant to that weight loss effort, and that's a defining feature in lipedema.

John Bartholomew, MD:

I can generally walk into the room and have the patient stand, and I can tell by simply observation I'd say nine times out of 10. For the patient that has lipedema who's rather slender, it's a little more difficult to tell, but as we pointed out, it's also known as the painful fat syndrome, and so many we see are overweight. So again, I can usually tell simply by looking at them.

I can also tell by physically, as I mentioned earlier, they have this cuff sign at their ankles, they also have an appearance to their thigh, and that's another kind of a telltale sign. They can have it in the upper arm, their upper arms are much larger than their forearms and they're very painful if I palpate them, and many times I can feel, some people call them rice grains. I call them little nodules that are very painful when we palpate them. So, those are some things that come to my mind about making the diagnosis of lipedema.

Doug Joseph, DO:

Yeah, so at this point, lipedema is mainly a clinical diagnosis. Someday we'll have a blood test or a more definitive way, imaging test that we can make a diagnosis. With lymphedema, it can also be challenging to make the diagnosis, but we do have imaging techniques like a lymphoscintigraphy, lymphography, and in addition to our physical exam findings that gives us the diagnosis.

For treatment in lymphedema, the first step is to refer patients for complex decongestive therapy involving mainly three components, manual lymphatic drainage, short stretch compression bandaging, and then exercises designed for improving lymphatic function and increasing lymphatic drainage from the limb that's being treated, the limb or limbs.

Additionally, things that you can use are things like an intermittent pneumatic compression pump, which actually uses air bladders that compress the limb in a sequential segmental fashion to help promote drainage of lymphatic congestion from the leg, or edema or swelling in the leg.

Additionally, there are some surgical procedures that can be done where you can connect the lymphatic channels to veins, or you can move lymph nodes into an area that has damaged lymph nodes, and sometimes you can perform a liposuction type procedure to remove fibrotic or inflamed tissue. Those are the main treatments for lymphedema.

John Bartholomew, MD:

For lipedema, the main treatment is to control the patient's pain. Pain is really very important to get under control. So of course, weight loss is also important, so there are several things that we do. One, stress diet, ketogenic diet, the RAD diet, paleo diet, and I often get endocrinology involved not only with diet, but also there are medications I'll mention briefly. But I think a team approach is what I like to use, so that we have endocrinologists, physicians and dieticians as well to help with dieting and weight loss.

Similar to lymphedema, compression seems to help maybe somewhat with the pain, so I will send the patient to lymphedema therapy for lipedema treatment. They'll fit the patient into compression garments, intermittent pneumatic compression devices that they can take home and use at night to help reduce some of the fluid that we might see.

Then there are a lot of other things that are maybe more novel. One of them is a vibration plate. A lot of the patients that I deal with say that standing on this vibration plate helps them, and then exercises like cycling, getting into a pool and walking, because it's much easier with that weight and the pain in their legs to walk in a pool rather than on ground. Yoga and Pilates are also recommended, and then I often have patients join patient groups.

Many of these patients are very overweight and they have low self-esteem, and so getting them to talk with other patients and to find out what works for one patient as opposed to another one, so I'll get other ideas, novel ideas. Then we have a whole list of medications that you can try, then we also address their veins too.

Then of course, in addition to endocrinology weight management, we consult lymphedema therapists, we consult our plastic surgeons to see if they are interested in the ultimate treatment, which is liposuction. Here at the clinic, we do some patients. We like them to lose weight first, but liposuction seems to help very much with their pain.

Doug Joseph, DO:

I think for the vast majority of patients it is a chronic condition. I think both lipedema and lymphedema are chronic conditions. I think it depends on what stage of the condition that you are treating and where you're at. For instance, if you have a form of lymphedema where you have treatment of breast cancer-associated lymphedema where it involves a single limb and you catch it very early on and you'd start treatment early on, and maybe a procedure that someone could do, like I mentioned earlier, the lymph node transfers or the lymphaticovenous anastomosis they call them, LDAs.

If they were able to do a procedure that may restore lymphatic function, theoretically that person might be able to be cured of their lymphedema. But I think for the vast majority of patients, at least in the United States, it's a chronic condition. It's usually diagnosed a little bit later and it usually requires lifelong treatment and management. It is definitely manageable and treatable, but for most patients it is chronic. There may be some cases that could be cured.

John Bartholomew, MD:

With lipedema, again, it's a chronic condition. Liposuction seems to help many, but it's not always available, because it's considered cosmetic by many of the health insurers, and so you have to go and do a detailed letter of medical necessity. Then eventually most of these patients will get coverage from their insurance, but it will come back if you just keep gaining weight. So, the key is that it's not just having liposuction, but maybe modification of lifestyle with diet, counseling, what have you, to avoid gaining weight once again.

But yes, treatment works very well. I've had people come back after surgery, they're like new, but then I've seen them come back a few years later and they've gained 10 or 20 or 30 pounds and they're starting to have the same pain again. So, I would say, as Dr. Joseph mentioned, it's a chronic condition. It is manageable, but it requires an aggressive approach to diet, weight loss, exercise, and then surgery.

With lipedema, again, many of these patients are overweight, and so unfortunately there's a tendency to just think it's your weight and nothing else to worry about, and most people have no idea what lipedema is. It was first diagnosed in the early 1940s, but more recently there is more knowledge about what lipedema is. So, they need to find a physician that will listen to them and maybe do their own homework and take information to their doctor with them that, hey, there is this condition lipedema, it's in scientific journals. Would you look into this for me?

Doug Joseph, DO:

Yeah, and certainly you can always call the Cleveland Clinic or come see us in vascular medicine. Like we mentioned earlier, it's mainly a clinical diagnosis, which means it's based on physical exam and history-taking. It doesn't require a lot of imaging or testing or a lot of blood work or anything like that, it's mainly just full examination and history-taking. We can make the diagnosis; we can make referrals. I've had patients from far off distances come and see me, and I can write prescriptions for them to have therapy done locally.

A lot of the work that's done for many conditions is the patient, you go home and then you follow the instructions. You make appointments with therapists, and you work on dietary changes, and you get involved in an aquatics aerobics class and that kind of thing.

We're happy to see patients and we'll rule out other problems that may be going on and then make sure there's nothing else to worry about. We'll differentiate whether this is lymphedema or lipedema, or is it venous insufficiency or is it something else that could be causing the problem?

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