Disability Doc

• On November, 15, 2002, the Social Security Administration (SSA) issued a formal ruling (SSR 02-2p) about Interstitial Cystitis (IC) and its relation to Social Security disability. As SSA indicates in SSR 02-2p, the causes of interstitial cystitis are unknown, and there are no definitive tests for the disorder.
• The diagnosis of interstitial cystitis is made after excluding other possibilities for an individual's symptoms (“diagnosis of exclusion”). Although SSA does recognize interstitial cystitis as a medically determinable impairment that can be very serious and result in disability under SSA’s rules, they are unable to include it in the new genitourinary body system listings at this time. SSA also believes that SSR 02-2p provides more detailed and useful criteria than they would have been able to include in the preface to the new genitourinary listings.

Social Security’s definition of disability

In order to be found disabled under Social Security's rules, you must have a severe mental or physical impairment, or a combination of impairments, that prevents you from performing your past work or any other type of work. Your impairment or impairments must have lasted for twelve continuous months or be expected to last that long or result in death.

Interstitial Cystitis (IC)

• A complex, chronic bladder disorder of unknown cause
• Occurs most frequently in women (about ten times more often than in men)

May be associated with other disorders including:

• Fibromyalgia
• Chronic fatigue syndrome
• Allergies
• Irritable bowel syndrome
• Endometriosis
• Vulvodynia (vulvar/vaginal pain)
• Systemic lupus erythematosus

Symptoms are similar to other genitourinary disorders including:

• Acute urinary tract or vaginal infections
• Post-radiation bladder inflammation or infection
• Bladder cancer
• Kidney stones
• Endometriosis
• Neurological disorders
• Sexually transmitted diseases
• In men, chronic bacterial and non-bacterial prostatitis

The following symptoms of IC may occur singly or in combination:

• An urgent need to urinate (urgency)
• A frequent need to urinate (frequency)
• Nocturia (night-time urinary frequency)
• Pain in the bladder and surrounding pelvic region
• Impaired concentration due to fatigue

For IC, SSA will assess medical records for the following tests:

• Urinalysis
• Urine culture (lab test for growth of microscopic bacteria and viruses)
• In men, culture of prostate secretions
• Urine cytology (pathology report of a microscopic urine study)
• Cystoscopy (scope used to see inside the bladder)
• Biopsy of the bladder wall (pathology report describes tissue sample of bladder wall)

Cystoscopy with hydrodistention (uses fluid to distend the bladder) is especially helpful in evaluating interstitial cystitis. Cystoscopy can estimate bladder capacity (how much urine the bladder can hold); and to look for bladder wall abnormalities, such as glomerulations (pinpoint bleeding caused by recurrent irritation) and Hunner’s ulcers.

A diagnosis of IC is based on the presence of some or all of the following:

• Presence of urinary urgency or frequency (day and/or night), either singly or in combination
• Pain in the bladder and surrounding pelvic region
• Suprapubic (above the pubic bone) tenderness on physical examination
• Glomerulations (pinpoint bleeding caused by recurrent irritation) on the bladder wall after hydrodistention on cystoscopy
• Hunner’s ulcers on the bladder wall after hydrodistention on cystoscopy
• Absence of other disorders that could cause the symptoms (diagnosis of exclusion)

Note: SSA will not purchase a cystoscopy test to help establish a diagnosis of IC because it is an invasive procedure.

In IC, diagnostic tests may yield minimal objective findings, similar to Fibromyalgia & Irritable Bowel Syndrome, but SSA must still consider the reported severity of subjective symptoms and reported impact on function if the diagnosis of IC is established by a treating source.

Your physician and medical records

SSA will rely on the judgment of a physician who has made the diagnosis after a review of the claimant’s medical history, a physical examination of the claimant, and any pertinent testing to establish the existence of IC.

In the absence of evidence to the contrary in the case record, SSA will find a medically determinable impairment is established if the evidence contains the appropriate symptoms, signs, and laboratory findings. However, if there is evidence that shows the diagnosis is questionable, and the evidence is inadequate to decide whether or not the individual is disabled, SSA says it will contact the treating source for clarification.

I don’t recommend you rely on SSA to contact a treating source to clarify any discrepancies. You should make sure all of your doctor’s medical records have been submitted and contain enough detail to confirm the diagnosis of IC. If necessary, have the doctor who treats you for IC write a letter to SSA confirming the diagnosis with supporting tests and/or labs.

Treatment for IC

• Is generally supportive and based on symptoms, which vary in kind and intensity from individual to individual, and even in the same individual (e.g., a woman’s symptoms may worsen around the time of menstruation).
• Bladder distention (hydrodistention) may reduce pain and urinary frequency for a limited time.
• Bladder instillation (bladder is washed with medicine).
• Oral drugs, such as the prescription drug Elmiron (for relief of bladder pain due to IC). Side effects include diarrhea, nausea, headache, abdominal pain and dizziness, but it is usually well tolerated.
• Antidepressants
• Antihistamines
• Pain management may include: narcotics such as morphine containing medications and use of transcutaneous electrical nerve stimulation (TENS unit).

Note: Studies have shown that antibiotics are not useful for treating IC.

Response to treatment is variable, and some individuals may have intractable (persistent despite treatment) symptoms. Individuals with intractable pain are more likely to win Social Security disability benefits, especially if your file shows you are significantly limited by the pain.

Symptoms and how they limit you

SSA considers reported pain, weakness, fatigue, and other symptoms. Don’t rely on SSA to obtain detailed information about daily activities. You should provide this type of information even without being asked for it. SSA will consider an individual’s statements about how symptoms limit functional abilities, so it is important that applicants describe in vivid detail how they are limited by symptoms of IC.

SSA considers the duration, frequency, and intensity of symptoms; precipitating and aggravating factors; type, dosage, effectiveness and side effects of prescribed medications; and any other factors that result in functional limitations or restrictions.

Chronic pain can limit exertional and non-exertional functions, and make it difficult to focus and sustain attention on the task at hand. Bladder pain can range from mild discomfort to extreme distress. Many individuals also experience vaginal, testicular or penile pain; or low back and thigh pain.

Nocturia (night-time urinary frequency) can disrupt sleeping patterns, leading to drowsiness with lack of mental clarity during the day.

Social functioning may be restricted when urinary frequency, which can necessitate trips to the bathroom as often as every 10 to 15 minutes, makes leaving home difficult.

Limitations in your function depend on many factors, including urinary frequency and pain. Individuals should tell if they have limitations of exertional functions, such as sitting, standing, walking, lifting, carrying, pushing, and pulling. Also report any postural limitations, such as climbing, balancing, stooping, and crouching. And any limited ability to tolerate extreme heat, humidity, or hazards due to symptoms of IC.

SSA also considers reports of persistent weakness, fatigue, and symptoms not controlled by treatment.

Other conditions associated with IC

If other conditions are associated with IC, SSA considers these conditions in combination with IC. For example, medical records may show a possible discrete mental impairment or symptoms, such as anxiety or depression, resulting from IC or the side effects of medication.

IC can increase the severity of coexisting or related impairments, including mental disorders, to the extent that the combination of impairments meets or equals listing requirements. The reverse may also be true. Coexisting or related impairments can increase the severity of IC.

IC and your ability to work

The ability to sustain work activities on a regular and continuing basis may be limited due to symptoms of IC. SSA must consider the effect IC has upon the individual’s ability to perform routine movement and necessary physical activity within the work environment.

Individuals with IC may have problems with the ability to sustain a function over time, but medical records must support this fact.

If an individual’s impairment does not meet or equal a listing, SSA must provide a Residual Functional Capacity (RFC) assessment, which considers an individual’s maximum remaining ability to do sustained work activities in an ordinary work setting on a regular and continuing basis.

A ‘‘regular and continuing basis’’ means 8 hours a day, for 5 days a week, or an equivalent work schedule. In cases involving IC, fatigue may affect the individual’s physical and mental ability to sustain work activity. This may be particularly true in cases involving urinary frequency and chronic uncontrolled pain.

IC as a medically determinable impairment

The Social Security Administration has acknowledged IC as a medically determinable impairment capable of producing signs, symptoms, and laboratory findings that may cause an individual to meet Social Security’s definition of disability. But it has not yet decided IC is a condition that supports its own listing in the “Listing of Impairments.”

This puts a greater onus on the individual applying for disability due to IC to prove they are disabled and unable to work. Don’t let this stop you from applying, because, as you can see from this article, there are steps you can take to improve your chances of winning benefits.

What you should do

• Be sure your doctor submits all medical records pertaining to the diagnosis and treatment of your illness.
• Encourage your doctor to write a letter or statement of support for your disability application. In it, he or she should describe how you were diagnosed with IC, what treatment you have had and your response to treatment, what symptoms you experience related to your illness; and exactly how you are physically and/or mentally limited by it. Your doctor should not simply say you are “disabled” or “unable to work.” Those types of opinions are, by law, reserved to the Commissioner of Social Security.
• Provide a detailed description of your daily activities that shows exactly how you are restricted by the symptoms of IC. It is a good idea to keep a regular diary that documents this description, and submit it to the Social Security office that handles your claim.
• Stay in close contact with your case worker at the disability office and promptly respond to all phone calls and letters.

With perseverance, you will succeed. Good luck.