Dercum's disease, also known as adiposis dolorosa, is a rare and debilitating condition characterized by painful subcutaneous lipomas (fatty tumors), often accompanied by weight gain, fatigue, and cognitive difficulties. While there is no cure for Dercum's disease, and the US Food and Drug Administration (FDA) has not approved any specific agents for its treatment, a variety of strategies can help manage symptoms and improve the quality of life for those affected. Among these, dietary and nutritional interventions play a crucial role. This article provides an overview of dietary recommendations and nutritional strategies that may be beneficial for individuals with Dercum's disease.
Understanding the Role of Diet in Dercum's Disease
Since 70% of the body's lymphatic system resides in the gut, identifying a nutrition plan that reduces inflammation is vital. Expert opinions emphasize the importance of anti-inflammatory foods in managing the discomfort associated with both lipedema and Dercum’s disease, as well as in maintaining healthy weight and energy levels.
The Importance of Allergy Management
Peer-reviewed medical research into Dercum’s Disease has revealed abnormalities in many patients’ immune systems, including a higher than average rate of allergies. Managing allergies is a crucial first step in addressing dietary needs.
Identifying Allergens
Consulting an allergist is essential to guide you through necessary testing and potential allergy elimination regimens. Allergy elimination tests can help determine potential allergens.
The Allergy Elimination Process
With guidance from a doctor/allergist, identify a potential allergen and eliminate it from your diet or environment, tracking any changes in symptoms. After a period (typically around six months), slowly reintroduce potential allergens one at a time to determine the cause of any unusual symptoms, as allergic reactions can extend beyond traditional rashes or breathing problems.
Read also: Managing Stage 3 Kidney Disease with Diet
Common Allergens to Consider
Certain items are common allergens, even for people without Dercum’s Disease. Start by eliminating anything with a strong fragrance, such as perfume, air fresheners, fabric softener, dryer sheets, hygiene products, soaps, detergents, incense, and oils. Also, consider mold-based items, including common food ingredients such as probiotics, soy sauce, citric acid, and carrageenan. If you react badly around natural Christmas trees, mold may be a potential allergen. Similarly, examine fungi as another potential allergen, as mushrooms are hidden in many foods.
Tracking Diet and Symptoms
Carefully track your diet and symptoms, and work with your doctor to identify potential correlations. Do not assume that "natural" or "organic" equals "safe," as some of the most dangerous substances are perfectly natural.
Anti-Inflammatory Diet: A Cornerstone of Management
Given the inflammatory nature of Dercum's disease, adopting an anti-inflammatory diet is often recommended. A traditional Western diet is thought to lead to excessive accumulation of white adipose tissue and increased inflammation.
Key Components of an Anti-Inflammatory Diet
Some patients have reported benefits from reducing their intake of simple sugars, dairy, meat, and gluten, while increasing their intake of green leafy vegetables, colorful fruits, and foods high in omega-3 fatty acids such as salmon, walnuts, and flaxseed oil. These changes have been associated with higher energy levels, reduced inflammation, and better responses to exercise and pain management.
Practical Tips for Implementing an Anti-Inflammatory Diet
- Increase Omega-3 Fatty Acids: Incorporate foods like salmon, walnuts, and flaxseed oil into your diet to help combat inflammation.
- Load Up on Fruits and Vegetables: Focus on a variety of colorful fruits and green leafy vegetables, which are rich in antioxidants and anti-inflammatory compounds.
- Reduce Simple Sugars: Minimize the consumption of processed foods, sugary drinks, and refined carbohydrates.
- Limit Dairy and Meat: Some individuals find relief by reducing or eliminating dairy and meat from their diet.
- Consider Gluten Sensitivity: Experiment with a gluten-free diet to see if it alleviates symptoms, as some Dercum's disease patients may have gluten sensitivities.
Low-Carbohydrate Diets: RAD Diet and Keto Diet
For women with lipedema, reducing swelling and inflammation, maintaining low insulin levels, and adhering to a low glycemic index are important. The Rare Adipose Disorder (RAD) Diet is one option, but recent research has shown that a low-carbohydrate diet can effectively limit pain and improve quality of life.
Read also: Explore Diet and Disease
The Rare Adipose Disorder (RAD) Diet
Dr. Wright recommends following a Rare Adipose Disorder (RAD) diet, a modification to a standard Mediterranean diet that helps maintain a low glycemic index to limit blood sugar spikes. This involves avoiding refined or processed starches and sugars, commonly found in pasta, rice, bread, corn, and potatoes.
Low-Carb Diet vs. Keto Diet
The main difference between a low-carb diet and the keto diet lies in carbohydrate intake and energy usage by the body. A low-carb diet generally reduces carbs to below 100-150 grams per day but doesn’t always induce ketosis, where the body burns fat for fuel. The keto diet limits carbs to 20-50 grams per day, forcing the body into ketosis by using fat (ketones) instead of glucose as the primary energy source.
Benefits of Low-Carb Diets
A study published in Obesity evaluated the effects of a low-carbohydrate diet (LCD) on pain and quality of life in women with lipedema. The randomized controlled trial involved 70 female patients and compared LCD with a standard control diet over eight weeks. Results showed that the LCD group experienced greater weight loss and reduced pain, though there was no direct link between pain reduction and weight loss.
Study Results: Mediterranean Diet vs. Keto Diet
Researchers from Stanford University found that both the Mediterranean diet and the keto diet improved blood glucose and led to comparable weight loss.
- Keto saw a bigger decrease in triglycerides (16% vs. 7% in Mediterranean).
- LDL cholesterol was higher in keto dieters (+10% vs. -5% in Mediterranean).
- Both diets had similar weight loss (8% keto vs. 7% Mediterranean).
- HDL cholesterol increased (11% keto vs. 4% Mediterranean).
Practical Tips for Low-Carbohydrate Diets
- Limit Refined Starches and Sugars: Avoid foods like pasta, rice, bread, corn, and potatoes.
- Focus on Healthy Fats: Include sources like avocados, nuts, seeds, and olive oil.
- Increase Protein Intake: Consume lean proteins such as chicken, fish, and tofu.
- Monitor Carbohydrate Intake: Keep track of your daily carbohydrate intake to ensure you stay within the desired range.
- Consult a Nutritionist: Work with a healthcare professional to create a personalized low-carbohydrate diet plan.
Additional Nutritional Considerations
Addressing Fluid Retention
For people prone to retaining fluid through edema, lipedema, or lymphedema, improvements from a new diet may not be immediately obvious. However, patients have reported benefits such as less pain, less inflammation, more mobility, less fatigue, and less weight.
Read also: A Review of the Mediterranean Diet in Kidney Disease
Supplements and Micronutrients
Selenium
Selenium has been studied for its potential benefits in treating lymphedema. Some studies suggest that selenium, in combination with physical decongestive therapy, may improve secondary lymphedema.
Diosmin
Diosmin has been shown to improve leg edema or swelling and decrease leg circumference. Other studies have indicated that Diosmin can improve venous ulcer healing, hemorrhoids, and lymphedema.
Omega-3 Fatty Acids
Omega-3 fatty acids are known for their anti-inflammatory properties. They can be obtained from fish oil supplements or dietary sources like flaxseeds, walnuts, and fatty fish.
Other Therapeutic Options
Traditional management of Dercum disease has been largely unsatisfactory, relying on weight reduction and surgical excision of particularly troublesome lesions. At present, no drug is known to be capable of changing the course of the disease, and the available pharmacologic treatments are only symptomatic. Nonpharmacologic approaches (e.g., acupuncture, cognitive behavioral therapy, hypnosis, and biofeedback) may be used as adjuncts to pharmacologic treatments.
Pharmaceutical Interventions
Prednisone in dosages no higher than 20 mg/day has been reported to provide some pain relief. [38] In one case, however, the induction of disease was associated with high-dose corticosteroids. Intravenous (IV) lidocaine, 400 mg over 15 minutes every other day, has been reported to provide pain relief for 10 hours to several months. [39] The exact mechanism of action is uncertain, and there remains a question as to whether the pain relief is a central effect or is due to the drug's effect on blood flow. Long-term IV lidocaine therapy has been associated with neurotoxicity and may potentially lower the seizure threshold. Traditional analgesics, such as nonsteroidal anti-inflammatory drugs (NSAIDs), have generally been considered to have a poor effect. However, a large 2007 series by Herbst et al found that 89% of patients achieved relief when treated with an NSAID and 97% achieved relief when treated with an opiate. [3] Acetaminophen is a reasonable first-line choice. Anecdotal evidence has suggested that low-dose d-amphetamine can reduce pain in patients with Dercum disease. A report by Ghazala et al described two patients, a 55-year-old man and a 52-year-old woman, who were treated with d-amphetamine to improve lymphatic function through the sympathetic nervous system. Ketamine infusions have been used to treat other chronic pain syndromes, including chronic cancer pain, complex regional pain syndrome, fibromyalgia, migraine, ischemic pain, and neuropathic pain. A case report of a 53-year-old man diagnosed with Dercum disease found that ketamine infusions (500 mg of ketamine in a 500-mL bag of 0.9% NaCl) reduced the patient's pain to 0 of 10 postprocedurally, a reduction that was sustained for 3 months. In a report by Gonciarz et al, interferon alfa-2b induced long-term relief of pain in two patients with Dercum disease and chronic hepatitis C. [41] The analgesic effect of interferon therapy was unexpected and occurred 3 weeks after treatment with 3 million units three times weekly for 6 months. Two Dercum disease case reports described pain relief with daily intake of oral mexiletine, an antiarrhythmic. Singal et al reported improvement of one patient's Dercum disease during infliximab therapy, with and without methotrexate, for ankylosing spondylitis. [43] When these medications were discontinued, the patient experienced recurrent weight gain and lipoma pain. McKay et al reported a patient with Dercum disease who improved after administration of infliximab plus methotrexate. Desai et al reported on treatment with a lidocaine (5%) patch, [44] and Lange et al reported on successful therapy with pregabalin with manual lymphatic drainage. [45] Calcium-channel modulators such as oxcarbazepine (and pregabalin) have also been tried. Metformin has been used with success in a patient with Dercum disease and associated pain. It is thought that the drug may be capable of favorably altering the cytokine milieu, impacting mediators such as TNF, IL-1, and leptin. One study on cytokines in patients with Dercum disease found no significant differences between these patients and control subjects with regard to TNF, leptin, IL-1, and most other mediators; however, patients with disease did demonstrate significantly lower levels of macrophage inhibitory protein (MIP)-1β, higher levels of IL-13, and lower levels of fractalkine, an adipokine whose receptors are characteristically upregulated in prolonged neuropathic pain.
Other Therapies
Hypobaric Pressure Therapy
Hypobaric pressure therapy has been considered a means of treating pain associated with edema. In a pilot study focused on hypobaric pressure therapy in patients with Dercum disease using a cyclic altitude conditioning system, Herbst et al reported decreased pain after 5 days of therapy.
Manual Lymphatic Drainage
Twice-weekly manual lymphatic massage has been used to treat the obstructive symptoms seen with lipomatous growths in Dercum disease; . However, it has been noted that massage may worsen the progression of lipomatous growths in some patients.
Acupuncture
Acupuncture can be beneficial in chronic pain relief, but there is a lack of research studies and case reports specifically addressing acupuncture in the management of Dercum disease.
Liposuction and Excision
Liposuction is regarded as a supportive treatment for Dercum disease. [49] A significant initial reduction of pain and an improved quality of life are reported; these effects decrease over time. Liposuction is indicated for patients with generalized lower-body fat or more localized large deposits of fat at the knees, on the arms, on the thighs, or on the stomach, as opposed to those with general diffuse pain. In those patients, liposuction is considered a risky operation, requiring approximately 1 week of care in the plastic surgery department. Additionally, liposuction is contraindicated in patients with recurrent lipomas. Excision of isolated painful lipomas that are pressing and causing numbness and tingling, though not preventive, is useful for ameliorating local symptoms of pain in the short term. [34] A case report detailed resection with interval application of wound vacuum-assisted closure combined with delayed closure with split-thickness skin grafting as an alternative for large exophytic Dercum lesions of the thigh that affected patient mobility; the procedure was not done primarily for pain relief. A case report by Cuellar-Barboza et al described the use of a simple minimal-incision technique to remove Dercum lesions on a 46-year-old woman. [52] A 4-mm punch was inserted into the top of the cutting surface through the center of the lesion. This was followed by dissection to extract the lipoma (either whole or piecemeal), irrigation with saline solution, and revision of the area to ensure extirpation. Incision sites were closed with one or two interrupted cutaneous sutures.
Transcutaneous Electrical Stimulation
Transcutaneous treatment with the frequency rhythmic electrical modulation system (FREMS) for four cycles of 30 minutes each for 6 months has been found to reduce pain in patients with Dercum disease. Another cutaneous electrostimulation modality that has been used for chronic cancer pain management is the MC5-A Calmare, which can be considered for treatment of Dercum disease; however, the use of this modality is limited by questions of insurance coverage, access to the machine, operator training, and reproducibility of electrode placement (an important step for achieving pain relief).
Prolotherapy
PIT/prolotherapy also may be considered, though data supporting its use in Dercum disease are lacking. PIT involves injecting a dextrose solution into tissues surrounding an inflamed nerve to reduce neuropathic inflammation; pain relief is usually immediate, but several treatments are required to ensure a lasting benefit. Dextrose prolotherapy has been used to treat chronic musculoskeletal pain; however, the lack of insurance coverage and the limited access to physicians who perform the procedure make this option unavailable to most patients.
Deoxycholic Acid (DCA) Injections
Wipf et al described off-label use of intralesional DCA (an endogenous secondary bile acid that assists in the breakdown of dietary fat in the gut and that is approved for adipolysis of submental fat) to treat Dercum disease in a 46-year-old White man after several medical (antidepressants, narcotics, pregabalin, and metformin), procedural (intralesional injection of triamcinolone 40 mg/mL), and surgical therapies (excision of lipomas) failed to provide adequate relief. [20] The patient reported overall decreased pain and reduced size of lesions at a 3-month clinic follow-up. Silence et al reported a case series of three patients with Dercum disease who were treated with subcutaneously injected DCA.
The Importance of Exercise
"Exercise in combination with a healthy diet is the cornerstone of treatment for people with fat disorders,” says Dr. Karen Herbst.
Avoiding Sedentary Periods
Extended sedentary periods should be avoided; returning to even light physical activity after such periods may aggravate symptoms because of the stiffness experienced.