What Is Lupus?
Systemic lupus erythematosus (SLE) is a chronic inflammatory disease that can affect any organ or body system. It is frequently accompanied by severe fatigue, fever, malaise, and weight loss. SLE is much more common in women, who account for 85% to 90% of the cases.
SLE is a multisystem disease. The immune response against the body’s own tissues can affect any organ, with joint, muscle, ocular, respiratory, cardiovascular, digestive, renal, hematologic, skin, neurological, or mental involvement.
Cause of Lupus
Systemic lupus erythematosus (SLE) is an autoimmune disease. Its cause is not well understood, but it does have a genetic component. Numerous “lupus genes” that influence the probability of developing lupus have been identified. SLE probably appears when a person has a particular combination of genes. Due to the complexity of the disease, a cure for SLE is not likely in the near future.
Severity of Lupus
SLE is unpredictable; it is characterized by exacerbations and improvements. It may follow a benign course and be highly responsive to medication, or it may take a sudden severe course leading to early death despite therapy. Any combination of organ systems can be involved in a particular individual, in any degree of severity.
Effects of Lupus
Lupus may result in:
- Inflammatory arthritis in the joints.
- Muscle inflammation, pain and weakness.
- Inflammation of the eye (uveitis), resulting in pain and blurry vision.
- Respiratory (breathing) problems such as pleuritis, pneumonia, inflammation of the lungs (lupus pneumonitis), and bronchiectasis.
- Heart problems, such as arrhythmias, murmurs, endocarditis, and cardiomyopathy with heart failure.
- Digestive problems such as abnormal contractions of the esophagus (dysmotility) or inflammation of arteries (vasculitis) supplying organs of the gastrointestinal system, resulting in pancreatitis, intestinal obstruction, abdominal pain, ulcers, weight loss, or death of intestinal tissue (intestinal infarction) requiring surgical intervention.
- Kidney problems such as chronic renal failure, which is a common cause of death in SLE.
- Blood (hematologic) problems which can result in decreased platelets, decreased white cells, or decreased red cells (anemia). Decreased platelets increase susceptibility to bleeding. Decreased white cells increase susceptibility to infection. Anemia results in easy fatigability and weakness.
- Skin problems leading to scarring, and the need to avoid direct sunlight (photosensitivity).
- Nervous system involvement resulting in inflammation of the central nervous system—spinal cord and brain.
- Mental disorders (e.g., psychosis, depression, and organic brain syndrome), which arises from nervous system inflammation.
- Arterial inflammation (vasculitis) resulting in impaired blood flow to various organs. Impaired blood flow to the hands and feet can decrease tolerance to cold.
Additional possible abnormalities that may be associated with SLE include:
- Muscle aches (myalgia).
- Joint pain (arthralgia).
- Hair loss (alopecia).
- Enlarged lymph nodes (lymphadenopathy).
- Enlarged spleen (splenomegaly).
- Enlarged liver (hepatomegaly).
- Sensitivity to cold (Raynaud’s phenomenon).
Diagnostic Criteria Required by the Social Security Administration
There are no universally agreed-upon criteria for making a diagnosis of SLE. The table below shows the diagnostic criteria required by the Social Security Administration.
Treatment for Lupus
Since SLE is incurable, treatment is based on drug therapy that will control symptoms and progression of the disease. Kidney failure is a major cause of death and kidney function must be closely monitored.
Therapy for lupus is based on suppressing the immune system. Systemic corticostroid drugs like prednisone can be highly effective, but their use is limited by potential side-effects (e.g., hypertension, obesity, poor wound healing, osteoporosis, osteonecrosis, cataracts). Methotrexate is another immunosuppressive drug that is useful in treating SLE. The anti-malarial drug plaquenil is often capable of keeping SLE under control.
Specific medications may be required for particular problems like hypertension, depression, and skin lesions.
Every case is different. Some people respond rapidly to maintenance therapy with plaquenil and have minimal symptoms. Others are not so fortunate.
To determine whether you are disabled at Step 3 of the Sequential Evaluation Process, the Social Security Administration will consider whether your lupus is severe enough to meet or equal the lupus listing. The Social Security Administration has developed rules called Listing of Impairments for most common impairments. The listing for a particular impairment describes a degree of severity that Social Security Administration presumes would prevent a person from performing substantial work. If your lupus is severe enough to meet or equal the listing, you will be considered disabled. The listing applicable to lupus is 14.02. It has two parts: A and B. You will meet the listing if you satisfy either part.
Meeting Social Security Administration Listing 14.02A for Lupus
You will meet listing 14.02A if you have systemic lupus erythematosus (see Diagnostic Criteria Required by the Social Security Administration) with:
A. Involvement of two or more organs/body systems, with:
1. One of the organs/body systems involved to at least a moderate level of severity; and
2. At least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss).
Part A requires involvement of at least two or more organs or body systems without consideration of severity. Parts A.1 and A.2 must both be satisfied.
Part A.1 requires that the involvement of at least one of the organs or body systems must be of moderate severity. So, what is “a moderate level of severity?” In many cases, the answer to this question is highly subjective. However, most doctors would probably agree on certain generalizations.
Moderate impairments are a more than slight or trivial compromise in the structure (anatomy) or function (physiology) of an organ or body system. Unavoidably, medical judgment is necessary to assess the level of impairment. Different organs or organ systems require different approaches to determining severity. For example, lung function tests provide a basis for deciding the level of impairment of the respiratory system, while imaging studies (e.g., x-rays, MRIs) along with physical examination and observation of gait permit an informed judgment regarding the severity of the dysfunction of a joint.
The treatment prescribed by your doctor is a clue to severity. Failure to prescribe treatment is a powerful argument that the doctor doesn’t think the abnormality is severe, unless there is a documented medical reason why treatment is indicated but cannot be given. Other factors include prognosis, as well as response to any treatment, and the expected natural history of the disorder with and without treatment.
In the mind of many doctors, symptoms also play a part in deciding whether a disorder has reached a threshold of “moderate” medical severity. However, the Social Security Administration has split off this aspect into part A.2, probably for the sake of clarity.
You must have at least two constitutional symptoms or signs that are medically severe. “Constitutional” means the entire body is affected. The Social Security Administration defines qualifying constitutional symptoms and signs as “severe fatigue, fever, malaise, or involuntary weight loss.” The Social Security Administration defines severe fatigue as a frequent sense of exhaustion that results in significantly reduced physical activity or mental function. Malaise means frequent feelings of illness, bodily discomfort, or lack of well-being that result in significantly reduced physical activity or mental function.
No specific requirement for the degree of fever is given, and it must be assumed that any abnormally high temperature would qualify. Fever should be documented in medical records as measured by medical personnel; home readings can have some weight but only if consistent with the treating doctor’s findings.
The Social Security Administration provides no criteria for the severity of “involuntary weight loss.” Since normal body weight may fluctuate a few pounds (from day to day fluid changes, if nothing else), this should be taken into account. Otherwise, no particular amount of weight loss is imposed by the listing. However, weight loss should be documented by medical personnel with reliable equipment.
Your credibility is always an issue. You must have a medically determinable impairment that could reasonably produce the symptoms you allege.
Meeting Social Security Administration Listing 14.02B for Lupus
You will meet listing 14.02B if you have systemic lupus erythematosus with:
B. Repeated manifestations of SLE, with at least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss) and one of the following at the marked level:
1. Limitation of activities of daily living.
2. Limitation in maintaining social functioning.
3. Limitation in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace.
Part B has a first requirement of the same constitutional signs or symptoms as discussed for part A.2. See Constitutional Symptoms.
Meaning of Repeated
“Repeated” means that the manifestations:
- Occur on an average of three times a year, or once every 4 months, each lasting 2 weeks or more; or
- Do not last for 2 weeks but occur substantially more frequently than three times in a year or once every 4 months; or
- Occur less frequently than an average of three times a year or once every 4 months but last substantially longer than 2 weeks.
Your impairment will satisfy this criterion regardless of whether you have the same kind of manifestation repeatedly, all different manifestations, or any other combination of manifestations. For example, two of the same kind of manifestation and a different one. You must have the required number of manifestations with the frequency and duration required in this section. Also, the manifestations must occur within the period covered by your claim.
Your immune system disorder must result in a “marked” level of limitation in one of three general areas of functioning: Activities of daily living, social functioning, or difficulties in completing tasks due to deficiencies in concentration, persistence, or pace. Functional limitation may result from the impact of the disease process itself on your mental functioning, physical functioning, or both your mental and physical functioning. This could result from persistent or intermittent symptoms, such as depression, severe fatigue, or pain, resulting in a limitation of your ability to do a task, to concentrate, to persevere at a task, or to perform the task at an acceptable rate of speed. You may also have limitations because of your treatment and its side effects.
“Marked” means more than moderate but less than extreme. “Marked” is not defined by a specific number of different activities of daily living in which your functioning is impaired, different behaviors in which your social functioning is impaired, or tasks that you are able to complete, but by the nature and overall degree of interference with your functioning. You may have a marked limitation when several activities or functions are impaired, or even when only one is impaired. Also, you need not be totally precluded from performing an activity to have a marked limitation, as long as the degree of limitation seriously interferes with your ability to function independently, appropriately, and effectively. The term “marked” does not imply that you must be confined to bed, hospitalized, or in a nursing home.
Activities of Daily Living
Activities of daily living include, but are not limited to, such activities as doing household chores, grooming and hygiene, using a post office, taking public transportation, or paying bills. The Social Security Administration will find that you have a “marked” limitation of activities of daily living if you have a serious limitation in your ability to maintain a household or take public transportation because of symptoms, such as pain, severe fatigue, anxiety, or difficulty concentrating, caused by your immune system disorder (including manifestations odf the disorder) or its treatment, even if you are able to perform some self-care activities.
You should describe in detail how symptoms limit your activities including the nature, location, duration, precipitating cause, and severity of any limiting symptom.
Social functioning includes the capacity to interact independently, appropriately, effectively, and on a sustained basis with others. It includes the ability to communicate effectively with others. The Social Security Administration will find that you have a “marked” limitation in maintaining social functioning if you have a serious limitation in social interaction on a sustained basis because of symptoms, such as pain, severe fatigue, anxiety, or difficulty concentrating, or a pattern of exacerbation and remission, caused by your immune system disorder (including manifestations of the disorder) or its treatment, even if you are able to communicate with close friends or relatives.
Behavior, including social interactions, that is closely supervised at the instigation of someone else is not independent. Appropriate behaviors are perhaps mostly easily defined in this context by what is not appropriate, such as withdrawal, frequent crying, anger, or emotional outbursts that make social interactions difficult or impossible. Effective sustained communication includes the ability to comprehend and respond to spoken or written language with sufficient clarity and focus that useful information can be exchanged in a reasonable amount of time.
Completing Tasks in Timely Manner
Completing tasks in a timely manner involves the ability to sustain concentration, persistence, or pace to permit timely completion of tasks commonly found in work settings. The Social Security Administration will find that you have a “marked” limitation in completing tasks if you have a serious limitation in your ability to sustain concentration or pace adequate to complete work-related tasks because of symptoms, such as pain, severe fatigue, anxiety, or difficulty concentrating, caused by your immune system disorder (including manifestations of the disorder) or its treatment, even if you are able to do some routine activities of daily living.
Specific information is needed. Examples of tasks you cannot complete in a timely manner don’t necessarily have to involve a workplace, but should allow the Social Security Administration adjudicator to make a deduction of your ability to perform work-related tasks. If you have difficulty completing tasks around the house or in other environments, you or other family members should be able to provide detailed information regarding failed tasks, including the nature of the task, length of time you can work at it until you have to stop, and the symptoms that caused you to stop. For example, inability to dust or vacuum for more than ten minutes because of fatigue is clear and to the point. The inability to finish grocery-shopping because of difficulty concentrating is another example. There are many possibilities.
When your lupus is not severe enough to meet or equal a listing at Step 3 of the Sequential Evaluation Process, the Social Security Administration will need to determine residual functional capacity (RFC) to decide whether you are disabled at Step 4 and Step 5 of the Sequential Evaluation Process. RFC is a claimant’s ability to perform work-related activities. In other words, it is what you can still do despite your limitations.
An RFC for physical impairments is expressed in terms of whether SSA believes you can do heavy, medium, light, or sedentary work in spite of your impairments. The lower your RFC, the less the SSA believes you can do.
An RFC for mental impairments is expressed in terms of whether Social Security Administration believes a claimant can do skilled, semi-skilled, or unskilled work in spite of impairments, or whether the claimant cannot even do unskilled work.
No case of SLE should be adjudicated without a detailed history and physical examination and all relevant laboratory tests. Your longitudinal medical records should be carefully reviewed to identify exacerbations and improvements in your clinical condition, since manifestations of SLE can both change and fluctuate in severity.
Because lupus may have such a broad range of effects (see Effects of Lupus), a wide spectrum of possible RFC limitations is possible. Some claimants with SLE have no symptoms because they have had a complete remission with treatment. However, the Social Security Administration adjudicator should not overlook alleged easy fatigability just because you have no unusual results from a physical examination in a resting state.
Environmental limitations against exposure to cold, based on your own statements about tolerable temperatures, can be important. You could also have difficulty tolerating work in hot environments—simply because of the debilitating effect of chronic disease and perhaps medication.
The Social Security Administration should carefully consider the possibility of mental manifestations of lupus, especially if your lupus appeared during childhood. Neuropsychiatric abnormalities in SLE such as headache, mood disorder, and cognitive disorder, are common.
Your Doctor’s Medical Opinion Can Help You Qualify for Social Security Disability Benefits
The Social Security Administration’s job is to determine if you are disabled, a legal conclusion based on your age, education and work experience and medical evidence. Your doctor’s role is to provide the Social Security Administration with information concerning the degree of your medical impairment. Your doctor’s description of your capacity for work is called a medical source statement and the Social Security Administration’s conclusion about your work capacity is called a residual functional capacity assessment. Residual functional capacity is what you can still do despite your limitations. The Social Security Administration asks that medical source statements include a statement about what you can still do despite your impairments.
The Social Security Administration must consider your treating doctor’s opinion and, under appropriate circumstances, give it controlling weight.
The Social Security Administration evaluates the weight to be given your doctor’s opinion by considering:
- The nature and extent of the treatment relationship between you and your doctor.
- How well your doctor knows you.
- The number of times your doctor has seen you.
- Whether your doctor has obtained a detailed picture over time of your impairment.
- Your doctor’s specialization.
- The kinds and extent of examinations and testing performed by or ordered by your doctor.
- The quality of your doctor’s explanation of your impairment.
- The degree to which your doctor’s opinion is supported by relevant evidence, particularly medically acceptable clinical and laboratory diagnostic techniques.
- How consistent your doctor’s opinion is with other evidence.
When to Ask Your Doctor for an Opinion
If your application for Social Security disability benefits has been denied and you have appealed, you should get a medical source statement (your doctor’s opinion about what you can still do) from your doctor to use as evidence at the hearing.
When is the best time to request an opinion from your doctor? Many disability attorneys wait until they have reviewed the file and the hearing is scheduled before requesting an opinion from the treating doctor. This has two advantages.
- First, by waiting until your attorney has fully reviewed the file, he or she will be able to refine the theory of why you cannot work and will be better able to seek support for this theory from the treating doctor.
- Second, the report will be fresh at the time of the hearing.
But this approach also has some disadvantages.
- When there is a long time between the time your attorney first sees you and the time of the hearing, a lot of things can happen. You can improve and go back to work. Your lawyer can still seek evidence that you were disabled for a certain length of time. But then your lawyer will be asking the doctor to describe your ability to work at some time in the past, something that not all doctors are good at.
- You might change doctors, or worse yet, stop seeing doctors altogether because your medical insurance has run out. When your attorney writes to a doctor who has not seen you recently, your attorney runs the risk that the doctor will be reluctant to complete the form. Doctors seem much more willing to provide opinions about current patients than about patients whom they have not seen for a long time.
Here is an alternative. Suggest that your attorney request your doctor to complete a medical opinion form on the day you retain your attorney. This will provide a snapshot description of your residual functional capacity (RFC) early in the case. If you improve and return to work, the description of your RFC provides a basis for showing that you were disabled for a specific period. If you change doctors, your attorney can get an opinion from the new doctor, too. If you stop seeing doctors, at least your attorney has one treating doctor opinion and can present your testimony at the hearing to establish that you have not improved.
If you continue seeing the doctor but it has been a long time since the doctor’s opinion was obtained, just before the hearing your attorney can send the doctor a copy of the form completed earlier, along with a blank form and a cover letter asking the doctor to complete a new form if your condition has changed significantly. If not, your attorney can ask the doctor to send a one-line letter that says there have been no significant changes since the date the earlier form was completed.
There are times, though, that your attorney needs to consider not requesting a report early in the case.
- First, depending on the impairment, if you have not been disabled for twelve months, it is usually better that your attorney wait until the twelve-month duration requirement is met.
- Second, if you just began seeing a new doctor, it is usually best to wait until the doctor is more familiar with your condition before requesting an opinion.
- Third, if there are competing diagnoses or other diagnostic uncertainties, it is usually best that your attorney wait until the medical issues are resolved before requesting an opinion.
- Fourth, a really difficult judgment is involved if your medical history has many ups and downs, e.g., several acute phases, perhaps including hospitalizations, followed by significant improvement. Your attorney needs to request an opinion at a time when the treating doctor will have the best longitudinal perspective on your impairment.
Medical Opinion Forms
Medical opinion forms can be great time savers for both your attorney and your doctor, but they must be used with care. Forms may not be appropriate at all in complex cases; and they need to be supplemented in many cases so that all issues are addressed. The best forms are clear and complete but not too long.
When the time is right, here is a form for your disability attorney to use: