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Adiposis Dolorosa (Dercum’s Disease)

Osterhout Berger Disability Law > Disabling Conditions > Adiposis Dolorosa (Dercum’s Disease)

Those living with adiposis dolorosa (AKA Dercum’s disease) are living with a painful and rare condition that may leave them unable to perform day-to-day tasks. The severe pain can affect their work life and leave them unable to pay their bills. Social security disability (SSD) benefits can really help out in situations like this. These benefits are offered to those who have worked in a job that’s covered by Social Security and have a medical condition that meets Social Security’s definition of a disability. Dercum’s disease is one such medical condition that could qualify individuals for social security disability benefits.

What is Dercum’s disease?

Adiposis dolorosa, also known as Dercum’s disease, is a rare disease that causes painful growths of fatty tissue called lipomas. The lipomas are often found on the back side, the stomach, the upper arms, and the upper legs. These lipomas, or adipose tissues, can sit on nerves and cause a lot of pain or even impair movement. This disease is typically associated with obesity and fatigue. Those between the ages of 35-50 are more likely to have the painful disease and it is more common among women than men, according to the Orphanet Journal of Rare Diseases.

The cause of this rare disease is unknown. Some medical professionals believe it may be an autoimmune disease and is a result of the immune system attacking healthy tissues. Others believe it’s due to a mutated fat gene that’s hereditary. There’s also a group of medical professionals that believe it could be due to a metabolic problem where the body doesn’t properly break down fat. It’s hard for medical professionals to pinpoint an exact cause because symptoms occur spontaneously and for no apparent reason.

Symptoms of Dercum’s disease

While the symptoms of Dercum’s disease vary from person to person, the main characteristic is painful lipomas. The pain itself also varies, but is most severe when the lipomas are pressing on nerves. Other symptoms may include:

  • weakness
  • easy bruising
  • weight gain
  • fatigue
  • difficulty sleeping
  • shortness of breath
  • anxiety
  • difficulty concentrating, focusing, or recalling memories
  • stiffness after laying down
  • headaches
  • rapid heart rate
  • joint pain

Some may experience other types of symptoms such as abdominal bloating, seizures, and skin infections. However, these symptoms are less common than the ones listed above.

Types of adiposis dolorosa

Adiposis dolorosa is broken into four types: generalized diffuse form, generalized nodular form, localized nodular form, and juxta-articular form.

  1. Generalized diffuse form: this type of adiposis dolorosa is characterized by the widespread adipose tissue that is painful, but doesn’t present itself in the form of lipomas.
  2. Generalized nodular form: this type is similar to the generalized diffuse form, but with the presence of lipomas.
  3. Localized nodular form: this form is characterized by the pain that is isolated to areas within and around lipomas. This type is also known as lipomatosis.
  4. Juxta-articular form: this type typically forms around the joints inside the knees, hips, or upper arms. Sometimes it can affect all of the joints.

Diagnosis of each type of adiposis dolorosa is determined through a clinical evaluation and is often discovered by ruling out other conditions such as lipedema and fibromyalgia. If fatty tissue is found, the doctor will conduct a biopsy to confirm that they are lipomas.

Treatment for Dercum’s disease

Treatment for this rare disease focuses on easing symptoms. There isn’t one specific treatment that seems to be standard for each individual and there isn’t a cure. Instead, doctors will try to find treatments that mainly focus on pain management. These treatments include:

  • Medicine: this is typically the treatment that doctors try first since medication can address multiple symptoms at once. Some medications that doctors may try includes methotrexate, lidocaine, and other anti-inflammatory medicines.
  • Surgical removal of the fatty tissues: this treatment becomes an option when the individual has lipomas. Surgeries that target the removal of fat, such as liposuction, can really help with quality of life since doctors are removing the source of the pain.
  • Weight loss: this treatment may help those without lipomas or those who have had lipomas removed. Since this rare disease is associated with obesity, doing low-impact exercises could help with easing tension in the joints and improving mobility.

There are alternative treatments that could help ease pain such as acupuncture and electrotherapy. There’s also a treatment that is currently being researched to treat symptoms of Dercum’s disease called interferon alfa-2b. This may or may not be an option depending on the individual’s doctor’s recommendations.

Regardless of which treatment doctors choose to use to help ease symptoms, it’s important for individuals suffering from this chronic condition to seek emotional support. Support can come from friends, family, or a mental health professional. Having a support system is beneficial to the individual’s mental well-being, but it also helps people feel less alone.

Getting Social Security Disability insurance (SSDI) for Dercum’s disease

Since individuals with Dercum’s disease often experience debilitating pain, individuals with this condition may qualify for SSDI. This is especially true for those who experience such intense pain that it makes it almost impossible for them to go to work and perform the tasks required of them. However, the Social Security Administration (SSA) has extremely strict requirements for individuals trying to get benefits from SSDI. Therefore, individuals will have to prove that the rare condition they’re living with is preventing them from performing the work tasks they would otherwise be qualified to execute. This not only includes the position they currently hold, but any position that they would be qualified for at other companies. The SSA will try to find a position that accommodates the individual’s disability based on the individual’s job history before determining whether or not the individual qualifies for SSDI benefits.

The SSA will also evaluate the individual’s medical history. Having a record of this rare disease by a licensed doctor is extremely important when applying for SSDI benefits as they expect individuals to have been dealing with severe symptoms for at least one year. Having a medical record will give the SSA an indication of how long the individual has been diagnosed with Dercum’s disease, how severe the symptoms are, and how often the symptoms occur. It’s very important for the doctor to take thorough notes once they’ve diagnosed the individual.

Individuals with a diagnosis of Dercum’s disease should tell their doctor that they intend to apply for SSDI benefits so that the doctor can take adequate notes. The individual’s medical record is probably the most important document of the application.

How we can help

Applying for SSDI is not an easy process. There’s a lot of paperwork that’s required to complete the application. Worrying about getting everything in order, in addition to dealing with chronic pain, can overwhelm individuals. This is not a process people should go through by themselves.

The best way to increase an applicant’s chances of receiving benefits is by going through the process with an experienced Social Security disability lawyer. Disability lawyers with experience in SSDI understand what the requirements are to complete the application and can help put the paperwork in order. Individuals who are suffering from this condition don’t have to go through this process alone. Allow one of our experienced disability lawyers at Osterhout Berger Disability Law help you with this process.

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Learn More

Learn more about long Social Security Disability Insurance, as well as appealing denials and how an attorney can help. These five resources will cover the basics: