Living with Lipomatosis dolorosa
A condition with painful fatty tissue and lumps just under the skin, most often in women aged 35 to 50.
Understanding Lipomatosis dolorosa
The pain is often linked to multiple noncancerous fatty tumors (lipomas). They feel like firm bumps, often on the torso, buttocks, or upper arms and legs. Pain can be severe, and for some it is disabling. It occurs most often in women between ages 35 and 50 who are overweight or have obesity.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Chronic pain
- Firm lumps under the skin (lipomas)
- Belly pain and bloating
- Tiredness (fatigue)
- Anxiety
- Depression
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Fat Disorders Research Society and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD lists autosomal dominant inheritance but does not name a gene. It is unclear whether some additional features are directly related to the condition.
Also known as: adiposalgia; adipose tissue rheumatism; adiposis dolorosa; dercum disease; dercum's disease; neurolipomatosis
Patient organizations
- Fat Disorders Research SocietyLipomatosis dolorosa · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Lipomatosis dolorosa.
Explore research for Lipomatosis dolorosa
Explore actively recruiting Lipomatosis dolorosa studies with HealthSpark.
Find actively recruiting studies for Lipomatosis dolorosa with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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