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Due to limited staff, LF does not directly support patients -- we focus where we can make a difference today (with research). We recommend the FDRS (Fat Disorders Research Society) www.fatdisorders.org for patients and caregivers.
Lipedema is characterized by increased adipose tissue in the limbs, and the adipose tissue may be painful. There is a very wide differentiation in feature presentation. The pain may be constant, may come and go, or only occur when the adipose tissue is pressed on. It may be very mild or severe. The mechanism of pain sensation is not understood at this time.
Many people experience some amount of swelling (non-pitting edema).
To grossly oversimplify the diagnosis, look for a 'cuff' at the ankle and wrist and check that the hands and feet to NOT swell via the Stemmer's Sign test.
Differentiation between venous disease (test via venous ultrasound), obesity (examine fat depot locations), lymphedema (possibly test via lymphoscintigraphy), lipedema and Dercum's Disease is important. The Diagnosing 1, Diagnosing 2, Primer, and Leg Swelling videos will be of use.
The tools listed on our Resources page should be reviewed in detail in order to familiarize yourself with lipedema, its diagnosis and its treatment.
what to do about lipedema
Because lipedema is not yet well understood, no one yet knows what will help people with lipedema best. Everyone's bodies are different, and as of now, we do not have any single formula that works for everyone. As you incorporate different treatments to see what works best, you should start each new thing slowly, one at a time, to see if it helps.
DO NOT STARVE YOURSELF. Eat better quality food in a healthy quantity.
Do not focus on weight, but do try to manage swelling and building muscle to support your body and stay as active as possible. It is important to remember that there are a few categories of things that contribute to one's weight: food in the digestive track, muscle, regular fat, lipedema fat and fluid. It can be hard to determine which are changing. Food and fluid is easiest to influence, then regular fat, then muscle, then lipedema fat.
The goals of treatment are: reduce inflammation, manage pain, improve lymphatic flow (to reduce excess fluid), get emotional support, and help your body deal with lipedema. The FDRS has a diagram showing which treatments affect each of those categories here.
As you consider treatments to try, keep in mind which are 'conservative' meaning not surgical, and which are surgical. In the US, it is easier to get insurance to approve surgery if you demonstrate that you first tried the conservative treatments. Moreover, some surgeons will not operate unless you first establish good routines with conservative treatments. Surgery does not correct the underlying issues, and you will still need good conservative habits after surgery.
Conservative treatments can be thought of as lifestyle changes (better nutrition and more moderate exercise), mechanical (MLD, compression garments and compression pumps), and supplements/medications.
Treatments that are cheap and easy to start include deep breathing, dry brushing and walking.
Nutrition suggestions vary, but are generally aimed at eating less inflammatory foods. Reducing calories does not reduce lipedema fat, and there is growing evidence showing that reducing calories too much encourages your body to store more fat. Paleo, keto, LCHF, RAD and anti-inflammatory diets are some of the recommended diets. One well-researched nutrition book has been created for lipedema patients specifically; see here. As you consider different nutrition plans, do your research to see what typically happens if you stop the plan.
Exercise recommendations are usually: walking, aquatic exercise of any kind, Pilates, cycling, and yoga. The goals are to get the lymphatic system moving, take care of your joints if you are hypermobile, and build strength to help combat extra weight.
Lots of information exists on mechanical treatments such as MLD, compression garments and pumps. The information is usually aimed at patients with lymphedema, but are also often applied to lipedema.
You will want to find a physician and therapist who are willing to learn about lipedema and are local to you. Since awareness is a problem in the US, print out the Giving Smarter Guide and other documentation, and bring it to the appointments with you. You may find that asking the Facebook groups for recommended providers in your area shortens the search.
Keep in mind that supplements are not tested by the FDA so there is no way to know which side effects there may be.
Most diuretics do not help alleviate the swelling of lipedema. Some pain medications increase swelling, most notably over-the-counter NSAIDs (this is brand new research that has been presented at the 2016 NLN conference but is not yet published). The TREAT Program lists supplements and medications that treat different things.