Patient Guide: Treatment of Lipedema and Lipo-Lymphedema

We are still waiting for research to give us a more complete picture of what causes lipedema, and so not surprisingly, we are also still waiting for a cure. But in the meantime lipedema treatment options exist that can help you control your symptoms and prevent progression to lipo-lymphedema, an advanced stage of the disease that includes the symptoms of lymphedema.

The goal of lipedema and lipo-lymphedema treatment is two-fold:

1. To improve patient quality of life by managing the symptoms of lipedema.
2. To prevent worsening of the condition, and the development of an advanced stage known as lipo-lymphedema.

Unsure if you have lipedema? Find out here: Patient Guide to Self-Diagnosing Lipedema and Lipo-Lymphedema.

How to treat lipedema

Background

Your treatment plan depends on your stage of lipedema, how severely you experience your symptoms, your goals, and of course should incorporate current clinical treatment guidelines for lipedema.

Most importantly, you and your health care team need to be on the same page so that you can set realistic treatment goals and avoid discouragement.

In order to set appropriate goals and achieve them you’ll need a clear understanding of:

1. What lipedema is, and your particular symptoms and stage of progression. Our previous post on self-diagnosing lipedema and lipo-lymphedema describes in detail the symptoms of lipedema and how cumulative physiological changes lead to a worsening of symptoms. Our aim in that post was to create a comprehensive and reliable source of information to help you understand what lipedema is, which symptoms you have (and don’t have) and what stage of progression you are at.
2. Available treatment options. We’ll discuss these bellow.
3. The intended goal of each treatment option. We’ll discuss these below.

Available Lipedema treatment options and how they help

Lipedema treatments fall into two general categories: ‘conservative’ treatments that are typically safe and easy to implement, and ‘invasive’ treatments (surgery). These treatment options and how they can help are described in detail below, but for a quick overview see Figure 1.

I) CONSERVATIVE TREATMENT OF LIPEDEMA

Conservative treatments can not cure lipedema, nor can they eliminate all of the symptoms. Instead, conservative treatments can help you manage and/or improve your symptoms, and reduce the likelihood of further disease progression.

Each of the treatment options listed below can help treat the symptoms of lipedema, either by reducing the fat component in the limbs (via weight loss), or by reducing the fluid component in the limbs (if swelling is present). Lipedema is a disease involving abnormal fat accumulation, and associated pain; in advanced stages, it can also be a disease of abnormal fluid accumulation.

Lipedema is believed to advance, and its symptoms worsen, in part through a cycle whereby fat deposition and swelling increases the amount of new fat deposition and swelling.  Fluid accumulation can eventually overburden the lymphatic system and culminate in lipo-lymphedema, a condition that combines the symptoms of lipedema and lymphedema. For a more in-depth description, please see our post on self-diagnosing lipedema.

Managing limb volume by reducing fat and fluid accumulation can thereby help reduce symptoms AND prevent disease progression.

Conservative treatments for managing limb volume and how they help:

1. Exercise Therapy

• Regular exercise is beneficial and is widely recommended.
• Exercise can work two-fold: first it can help reduce the risk of obesity. and second, it can increase fluid drainage from the limb by the muscle pump system and increasing the activity of the venous system.  Obesity and swelling both act to exacerbate lipedema and promote disease progression.
• Exercise activities should be chosen thoughtfully. Exercise should (1) be enjoyable by the patient so that it can be performed regularly and become routine, and (2) not cause pain or risk of injury. Regular purposeful walking, swimming and cycling can be great options.

2. Weight Loss

• Weight loss will NOT reduce the disproportionate fat deposits caused by lipedema. Patients with lipedema can lose weight until they have very little upper body fat, even to the point of being “skinny”, but this has no impact on the presence of abnormal fat deposits caused by lipedema. The fat accumulation in lipedema is not the same as generalized obesity, and cannot be cured through weight loss.
• Weight loss can reduce the PAIN symptom caused by lipedema. In lipedema patients who also overweight, the pain associated with the fat accumulation can be improved, and in some cases alleviated completely, with weight loss.
• Weight loss can help PREVENT the worsening of lipedema, in overweight individuals. For a patient with an otherwise normal body weight, weight loss will have no effect on their lipedema symptoms, as described above. However, patients should strive to maintain a healthy body weight, and lose weight if they are overweight or obese, as obesity will exacerbate the symptoms of lipedema (including pain) and lymphedema. In fact, extreme obesity can even be a cause of lymphedema on it’s own. This is because excess fat accumulation promotes additional fluid build-up (and in some cases also physically disrupt lymphatic vessels) which contributes to overburdening the lymphatic system and thus, results in swelling and lipedema symptom progression.

3. Compression garments / compression bandaging

• Specialized compression garments or bandaging can help reduce the accumulation of fluid that occurs in advanced lipedema, and prevent further fluid accumulation. These garments are the same as those used for lymphedema management, and differ from regular tensor bandages and athletic compression garments. The more swelling you have, the greater the benefit of compression. Since compression therapy is a central tool of lymphedema management, it is particularly effective in treating cases of advanced stages of lipedema (lipo-lymphedema) where normal lymphatic function is impaired and or insufficient to eliminate excess lymph fluid.
• Compression CAN help reduce symptoms of tightness and pain in the limbs by reducing swelling.
• Compression CAN help improve mobility. Garments can, to some extent, help reposition and redistribute the excess tissue in many cases, which can help improve mobility while it is worn (ref 1). Increasing mobility has obvious quality of life and health benefits. In advanced cases of lipo-lymphedema, where swelling and tissue changes/fibrosis can directly contribute to mobility impairment, compression can in turn directly improve mobility.
• Compression CAN help prevent disease progression. Since compression can help maintain smaller limb volume from a swelling perspective, and increased limb volume exacerbates the condition, in this way, compression garments can be helpful in preventing lipedema progression.
• Compression therapy is most effective for treating swelling when delivered in combination with Manual Lymphatic Drainage, a specialized form of massage.
• Compression CANNOT reduce the amount of adipose tissue (fat) that is already present.
• Compression garments are widely recommended. Since compression garments are beneficial while also being relatively easy, and safe, to implement, it is a widely recommended treatment tool for managing the symptoms of lipedema (in particular, pain).
• What compression garment would be best for you? We are often asked for advice on buying compression garments. Without seeing you in person to assess your limbs we cannot comment on whether or not you would benefit from compression, what level of compression would be optimal, or what shape/type of compression garment might work best for you. For the best advice, seek out a certified combined decongestive therapist in your area who is knowledgeable about lipedema. With that said, I understand that many people live in an area where local expertise can’t be found or is otherwise inaccessible to them. You may also wish to be proactive while waiting for a formal diagnosis. If this applies to you, you could consider purchasing a more ‘generic’ compression garment that is high-waisted, full-length to the ankle, and offers a low to moderate level of compression. Choosing a garment with these features should reduce your risk of unintended complications and should also be significantly less expensive than purchasing a more specialized or customized compression garment (although it may also be less effective). There are a number of reasonable options that can be purchased fairly easily, for example: the Bioflect Compression Legging which offers a mild level of compression (12-17 mmHg) combined with fabric properties that the manufacturer claims will micromassage superficial lymphatics and reflect far infrared energy back into the leg.
  

  An example of a compression garment that offers a high-waist, is full-length to the ankle, and offers a low-to-moderate level of compression.

  Another easily available option is the CzSalus Compression Legging. This garment offers a bit more compression, although still a fairly moderate 18-21 mmHg, and includes partial foot coverage – which is likely unnecessary. Compression of the foot is certainly beneficial for lymphedema or lipo-lymphedema patients whose swelling (typically) involves the foot, but it offers no real advantage for classic lipedema patients whose feet are typically unaffected.  If you think you might be comfortable with a higher level of compression, 20-30 mmHg and 25-30 mmHg leggings are also available. Although, if you have never worn compression before it is advisable to start with a lower level of compression. [Small disclaimer: if you purchase a garment through one of these links we may receive a very small fee which we use to support our blog, but feel free to look around for a garment that suits you best. Better yet, ask a local therapist for advice before making a purchase.]

• If you do decide to wear a compression garment, discontinue use immediately and see your therapist if you experience skin sensitivity, irritation, sores, infection, pain or discomfort, or an increase in swelling anywhere in your limb. It is also advisable to wash the garment every day or two. Washing by hand will help it maintain its shape and elastic properties.

4. Manual Lymphatic Drainage (MLD)

• MLD CAN help reduce swelling. Like compression garments and bandaging, MLD works most effectively on patients with greater levels of swelling. It therefore has little utility for reducing swelling in early cases of lipedema, where excess fluid accumulation is not yet observed and normal lymphatic function is still maintained. MLD is particularly effective in treating cases of lipo-lymphedema where there is a swelling component present, as MLD is a central tool of lymphedema management. It is delivered through specialized hands-on massage by a certified practitioner that acts to draw the accumulated fluid out of the limb through lymphatic vessels to return it back into circulation. MLD should be delivered in conjunction with compression therapy to help maximize its effect and minimize patient expense.
• MLD CAN help reduce pain and bruising. MLD, especially when delivered with appropriate compression garments / bandaging has been observed to significantly reduce both the pain (ref 2) and susceptibility to bruising (ref 3) that is typical of lipedema. Even in early cases of lipedema where MLD is not needed to reduce swelling, MLD still appears to relieve pain and promote well being (ref 1 and 4). The authors of one study commented: “There is hardly a therapy prescribed by physicians that promotes well-being more and is therefore demanded vehemently by patients.” (ref 4).
• MLD CAN help improve mobility in advanced cases of lipo-lymphedema, where swelling can directly contribute to mobility impairment.
• MLD CAN help prevent disease progression. At more advanced stages of lipedema, where noticeable swelling is present, MLD can help maintain smaller limb volume. Since increased limb volume can lead to a worsening of the condition of lipedema, MLD can be helpful in preventing its progression.
• MLD CANNOT reduce the amount of adipose tissue (fat) that is already present.
• MLD works hand-in-hand with compression, by reducing limb volume before compression garment fitting, in order to maximize the benefits of the compression. Compression garments are particularly effective at preventing additional fluid accumulation, but are also effective at reducing existing swelling, depending on the level of compression and style of garment used. Compression garments are composed of “short-stretch” materials that have a range over which they stretch before becoming inelastic, and they are sized for each person to suit their particular limbs’ needs.  It can be detrimental to size them too tightly, and not effective if they are sized too loosely. Patients are therefore measured for their compression garment(s) by a certified compression garment fitter, ideally after a fluid reduction phase of treatment, involving Manual Lymphatic Drainage massage.

5. Intermittent Pneumatic Compression (IPC)

• IPC is a device that reduces limb swelling. It is primarily prescribed for the treatment of venous insufficiency, and certain types of lymphedema (namely, primary lymphedema, a hereditary form of lymphedema). It is basically a sleeve with air chambers and a pump system that applies sequential air pressure to squeeze the limb and push fluid out of it.
• It may help reduce swelling for some lipedema patients where noticeable swelling is present. It can be used by some patients as a supplement to compression, MLD and exercise therapy, if these are deemed insufficient.
• Use of this device should be assessed on a case-by-case basis, as it will not be effective for some patients, or may be too painful for patients who are particularly pain sensitive.
• There is a risk of complications for some patients. Incorrect use could in some cases lead to swelling in the genitals and fluid cysts (ref5).

II) INVASIVE TREATMENT OF LIPEDEMA

For patients who show no improvement in symptoms with conservative treatment, or who continue to see disease progression, they may consider surgery as an option.

1. Liposuction and Lipectomy

• Surgery, and in particular liposuction, may be a treatment option for some to reduce the abnormal fat deposits caused by lipedema, in patients who do not have generalized obesity. Liposuction is usually performed in multiple sessions. Following liposuction, patients will typically benefit from compression therapy and MLD, and should strive to maintain an active lifestyle and continue to manage their weight to prevent the return of the condition. Reports suggest that for as many as 65% of patients, liposuction can decrease the need for ongoing conservative management (ref 6). Likewise, lymphedema liposuction has been shown to be remarkably effective at reducing the adipose tissue buildup that dominates advanced (stage 3) cases of lymphedema, and with appropriate ongoing management, disease re-progression can be prevented.
• Surgery appears to also reduce the tendency to bruise, and the symptoms of pain with pressure in lipedema patients (ref 7).
• Surgery can improve patient mobility by removing fat deposits that are physically impairing mobility.
• Surgery is NOT a cure, and will not prevent further fat deposition. Many patients will revert to their original condition within a few years, particularly with generalized weight gain. Conservative measures described above should be followed to help delay its return.
• Surgery cannot alleviate the lymphedema component. If lymphedema resulting from lymphatic damage was present before the operation, it will remain afterwards.
• Surgery can have complications, and you may not qualify to have these surgical procedures covered by health insurance. You should discuss this option with your family physician and plastic surgeon, including the potential complications, as well as determine your insurance eligibility if you have private health insurance coverage. It is important to note that risk of surgical complications always exist, which could include the possibility of damaging the lymphatic system and even potentially developing secondary lymphedema (ref 8).

III) SUMMARY OF LIPEDEMA TREATMENT OPTIONS

Fig1: Overview of lipedema treatment options and how they act to reduce symptoms.

How NOT to treat lipedema

Diuretics and laxatives are entirely ineffective against lipedema, as is weight loss in patients with otherwise healthy levels of body fat.

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References:

1. Reich-Schupke S., Altmeyer P., Stucker M. Thick legs – not always lipedema. J Dtsch Dermatol Ges. 2013 Mar;11(3):225-33. https://doi.org/10.1111/ddg.12024
2. Szolnoky G., Varga E., Varga M., et al. Lymphedema treatment decreases pain intensity in lipedema. Lymphology. 2011 Dec;44(4):178–182. abstract
3. Szolnoky G., Nagy N., Kovacs R.K., et al. Complex decongestive physiotherapy decreases capillary fragility in lipedema. Lymphology. 2008 Dec;41(4):161–66. abstract
4. Meier-Vollrath I., Schneider W., Schmeller W. Lipödem: Verbesserte Lebensqualität durch Therapiekombination. Dtsch Ärztebl. 2005;102: A1061–67.
5. Wagner S. Lymphedema and lipedema – an overview of conservative treatment. Vasa. 2011 Jul;40(4):271–79.  https://doi.org/10.1024/0301-1526/a000115
6. Warren Peled A., Kappos E.A. Lipedema: diagnostic and management challenges. Int J Womens Health. 2016 Aug 11:8:389-95. http://doi.org/10.2147/IJWH.S106227
7. Schmeller W., Hueppe M., Meier-Vollrath I. Tumescent liposuction in lipoedema yields good long-term results. Br J Dermatol. 2012 Jan;166(1):166: 161–68.  https://doi.org/10.1111/j.1365-2133.2011.10566.x
8. Suga H., Araki J., Aoi N., et al. Adipose tissue remodeling in lipedema: adipocyte death and concurrent regen­eration. J Cutan Pathol. 2009;36(12):1293–1298.  https://doi.org/10.1111/j.1600-0560.2009.01256.x