Social Security disability benefits are often the ultimate safety net for persons suffering from medical impairments that make it impossible for them to work. For most people, however, struggling through the Social Security Administration’s bureaucracy is frustrating, confusing and slow. For people suffering with Lupus, the requirements of the Act can appear overwhelming. This article briefly explains the essence of the Social Security Disability program and how it applies in claims related to Lupus.

General Description of the Law

The Social Security disability program is designed to pay monthly benefits to people suffering from medical problems causing symptoms so severe that it becomes impossible to function at any type of work. Issues of employability, insurability and location or desirability of alternative work will not be considered, although age and education are often important factors. This is a medical program that focuses upon medically proven symptoms and their impact on the ability to perform work activities.

Therefore, the focus in on function, not on diagnosis; SSA often admits that claimants have medical problems and are “impaired,” however, it denies that they are “totally disabled.” The debate is over what the claimant can “do” despite the medical problems.

The determination of disability focuses on “proof” of both the medical problem and the severity of the symptoms. The difficulty in claims based upon Lupus is in proving the severity of the symptoms – particularly the fatigue that is often the most disabling feature.

What is proof?

The Act and Regulations require an analysis of medical records such as doctors’ office notes, physician reports and medical test results. The written statements of the Claimant, and the testimony of the Claimant at a hearing, are generally given little weight if not supported by the medical evidence. It is important that a Claimant seeking this assistance actively treats with appropriate medical specialists and involves those doctors in the application process.

It is difficult to have a claim approved if the treating doctors report that the Claimant retains the ability to work.

The Medical Standards

Essentially there are two ways to prove disability in Social Security claims. The first requires medical proof that meets certain medical standards contained in Social Security’s Regulations. If the medical proof meets or equals the appropriate standard the Claimant may be presumed disabled and benefits awarded, as long as the non-disability requirements of the law are also met.

The second is used in claims where the medical standards are not met, but the proof establishes that there are not a significant number of jobs the Claimant can perform considering the remaining functional abilities, age, education and work experience.

A. Meeting or Equaling the Listings of Impairments.

The medical standards are known as the “Listings of Impairments.” The standards in the Listings cover many different body systems and illnesses, including Systemic Lupus Erythematososus hereinafter “SLE”).

The Listing for SLE is found at Section 14.02 of the Listings of Impairments. First the Listing discusses proof of the existence of the disease. Second, the Listing contains two different mechanisms for proving the impact of the disease and its symptoms on function.

To establish the diagnosis the Listing notes that the medical evidence will generally show that the patients fulfill the 1982 Revised Criteria for the Classification of Systemic Lupus Erythematosus of the American College of Rheumatology. SSA will review the clinical notes, test results and other medical evidence for proof of the diagnosis of SLE. The Listing acknowledges the various “constitutional symptoms and signs” such as fever, fatigability, malaise and weight loss.” It notes that there is often involvement of several body systems and frequently findings of anemia, leukopenia or thromobocytopenia.

Once the diagnosis is satisfied, the Listing then turns to the impact the disease has on function. There are two ways to meet this issue in the Listing. The first is to demonstrate significant involvement of a major body system. The Listing, unfortunately, is unclear as to the degree of limitation in the secondary system. The second means of proving functional impairment is in subsection (B) which requires lesser involvement of two body systems, along with evidence of significant constitutional symptoms such as severe fatigue, fever, malaise and weight loss.

14.02 Systemic lupus erythematosus. Documented as described in 14.00B1, with:

A. One of the following:

1. Joint involvement, as described under the criteria in 1.00; or

2. Muscle involvement, as described under the criteria in 14.05; or

3. Ocular involvement, as described under the criteria in 2.00ff; or

4. Respiratory involvement, as described under the criteria in 3.00ff; or

5. Cardiovascular involvement, as described under the criteria in 4.00ff or 14.04D; or

6. Digestive involvement, as described under the criteria in 5.00ff; or

7. Renal involvement, as described under the criteria in 6.00ff; or

8. Skin involvement, as described under the criteria in 8.00ff; or

9. Neurological involvement, as described under the criteria in 11.00ff; or

10. Mental involvement, as described under the criteria in 12.00ff.

B. Lesser involvement of two or more organs/body systems listed in paragraph A, with significant, documented, constitutional symptoms and signs of severe fatigue, fever, malaise, and weight loss. At least one of the organs/body systems must be involved to at least a moderate level of severity.

The Listings are intended to be a difficult standard that will not be met by many claims. However, if a Claimant can meet these requirements, benefits will be awarded as long as the other requirements of the program are met. A Claimant with SLE should provide a copy of this Listing to the treating physician to obtain a medical opinion as to whether this standard has been satisfied.

B. Residual Functional Capacity is reduced to extent that no work activity could be performed.

The alternative means of proving a claim for Social Security Disability benefits is to provide medical proof of symptoms from the impairment which are so severe that the person could not function at any type of work. The focus is upon the medical proof as it relates to the ability to perform work activities. The difficulty, however, is in proving the both the symptoms and their severity.

For SLE it is fatigue which most often persuades Social Security Administrative Law Judges to award this assistance. It is critical that patients fully describe this problem, if it exists, every time they visit the doctor’s office. Social Security will obtain and review all of the medical records and search for consistent complaints of severe fatigue. One of the most common problems is the failure of the patient to fully discuss symptoms with the physician creating a lack of evidence relating to severe fatigue in the doctors’ notes.

This article has not attempted to review the application process or any of the applicable Rulings and related caselaw. Nor is this article intended to provide specific legal advice or to create an attorney-client relationship. Hopefully, however, this brief analysis will provide some insight into the disability system and assist Claimants in obtaining this assistance.

18 thoughts on “Lupus Family Physician

  1. momofthree

    what is wrong, not lupus,not lyme disease, so what?
    Have joint pain,fingers,feet,ankles,wrists,getting worse. Tested positive for rheumatoid factor but,didn’t think I had arthritis, proteins levels not elevated? So now what,blood work done through family physician. My hands and feet swollen.Why?

    1. Linda R

      You need to see a rheumatologist. General pracitioners and family doctors are not trained to diagnose or treat autoimmune diseases.

      Arthritis means swelling of joints. You have it. Arthralgia means pain in the joints, you have it.

      Now you need a good rheumatologist to make the right diagnosis and get you on a treatment plan. If you don’t treat this, you can end up with permanent damage, damage that cannot be fixed.

      Are you talking about C-reactive protein? That is not the only marker for inflammation. How about your sed rate or ferratin?

  2. Danielle

    Medical anomaly that sounds like lupus but isn’t?
    For almost a year now, I have had the same symptoms and blood results. They include: chronic fatigue, anemia, Raynaud’s Phenomenon, secondary amenorrhea, lack of motivation/interest, off and on irritated bowels, low white cell count, and a positive ANA with speckled cells. Every single doctor I have visited (primary care physician, hematologist, and endocrinologist) have all asked if lupus runs in the family because it sounds/looks like lupus, but they ran a test once and said that it wasn’t. The only explanation they can give me is that I am autoimmune-prone because I have the autoimmune antibodies present. Can anybody explain this/does this mean I am bound to get lupus in the future?

    1. formerly_bob

      Lupus is not always easy to diagnose. The symptoms overlap many other problems and they vary considerably from person to person. The ANA test also does not definitively confirm or rule out lupus. The diagnosis can be sort of a best guess based on the weight of evidence. There’s a lot of evidence you might have lupus, and even if you don’t have lupus, the evidence points to some type of autoimmune problem – maybe some non-specific problem. The only other thing i can think of (i’m not a medical professional) that is not congenital is chronic fatigue syndrome.

      If I were in you situation i would ask the doc to consider trying prednisone for 3-4 weeks to see if the blood cell count increases. If it does, that means the problem is autoimmune. This might also provide some relief of the symptoms. It may also be helpful to try an antidepressant such as Wellbutrin to restore your energy/motivation.

  3. christina

    cancer possibility/Antibody?
    I have a question for a doctor ether family physician or hematologist/oncologist Or anyone who knows. If a patients has an antibody test done and it shows up with an antibody like a red blood cell warm antibody that indicates the patient may have lymphoma or leukemia , lupus or rheumatoid arthritis and their ana comes out negative for lupus and R.A. and cbc is pretty much normal but they have high rdw and hematocrit is just a few points away from being to low and wbc and rbc are with in normal range but on the borderline. Wouldn’t it be smart to continue more testing such as biopsy and imaging to find out it lymphoma is present? And also what would the next blood testing be that’s recommended after antibody and cbc have been done, before non blood testing such as imaging and biopsy is conducted? Because the nurse never told me what additional blood testing was being performed and its been 8 days and they still have no results available.

    1. Jethro

      ‘wouldn’t it be smart’ is a complaint, not a question. If you don’t trust your doctor, start looking for a new one.

      It’s true that patients know their own bodies, and it’s great to be assertive, but given you’ve previously asked “Is there a psychic or someone that can see the future who can tell me if im pregnant or not?” I think maybe you should leave the diagnosing to the medical profession.

  4. Marilyn B

    My 21-y/o daughter is plagued by daily headaches with all test results normal. Any suggestions as to cause?
    Presciption-strength Aleve and other over-the-counter headache medication has had no effect. She’s had an EEG, CAT scan, and MRI of the head, neck, and chest. All the blood work came back normal. Yet, her headaches continue on a daily basis and have become more and more frequent over the past three years. They start upon rising out of bed in the mornings. Sometimes they are in the front of her head, sometimes on both sides, sometimes on the back, sometimes pounding, and sometimes there is an intense pressure (squeezing) sensation. The family physician thought that the headaches were due to stress/depression and put her on Wellbrutin. The neurologist thought that the headaches were migrains and has put her on 50 mg of Topamax (4th week and no improvement). The rheumatologist thought that it was Lupus but has since ruled that out. She sees a chiropractor and physical therapist twice per week with no improvement. Anyone have any other suggestions? We are at our wits-end here!
    Her hair is shoulder-length and quite thin (always has been) but I appreciate all thoughts.
    Just today, I thought of calling an allergist for an appointment.
    No, she is not on any birth-control. I’ve heard of some young women who are put on birth-control medication in order to curb their heachaches that are related to their monthly cycle, however.

    1. HH in AK

      I had unexplained headaches at about the same age. I went to five different doctors, got five different diagnoses. One even prescribed glasses.

      Then one day I was at the dentist and he asked, “Have you been having headaches lately?” I almost cried. It turned out I had TMJ, trans-mandibular joint disorder. I was grinding my teeth at night and it was wearing out the muscles. The headaches were strained muscles on the sides of my head. My jaw didn’t hurt at all, but my eyes and temples were in pain all the time.

      Have someone look at her for TMJ, it’s an easy fix.

  5. christina

    Cancer possibility/Antibody?
    I have a question for a doctor ether family physician or hematologist/oncologist Or anyone who knows. If a patients has an antibody test done and it shows up with an antibody like a red blood cell warm antibody that indicates the patient may have lymphoma or leukemia , lupus or rheumatoid arthritis and their ana comes out negative for lupus and R.A. and cbc is pretty much normal but they have high rdw and hematocrit is just a few points away from being to low and wbc and rbc are with in normal range but on the borderline. Wouldn’t it be smart to continue more testing such as biopsy and imaging to find out it lymphoma is present? And also what would the next blood testing be that’s recommended after antibody and cbc have been done, before non blood testing such as imaging and biopsy is conducted? Because the nurse never told me what additional blood testing was being performed and its been 8 days and they still have no results available.

  6. s.g.

    Q for those knowledgeable about the body, esp. kidneys. proteinuria question?
    Two years ago I went to my primary care physician for a routine annual physical. My lab work came back abnormal. I was spilling very high amounts of protein and creatine. More tests followed and the same result was shown. I was sent to a Nephrologist.

    She was sure that I had some form of kidney disease. I was checked for the big diseases like lupus, cancers, etc. None. I held off on my kidney biopsy for several months; during that time I had frequent trips to the hospital for more blood and urine samples, all of which turned out very very high.
    I finally had a kidney biopsy. The results turned back negative for everything. She said my kidney tissue was very normal. She herself was shocked, and even had my test results ran through extra times and by different specialists, including those at the Mayo Clinic. Normal.
    However, the fact still remains to this day that I am spilling excessive amounts of protein in my urine.
    This is not normal.

    I never heard from my kidney specialist again. I was never diagnosed with anything, nor put on medicine, nor told to see anyone for checks on the matter or follow ups.

    The last time I saw my kidney specialist- when she told me I was fine she said “Well you probably had some IGA (nephropathy) brewing but stopped it by taking fish oil.” wtf???

    My questions for you are:
    -should i be worried or do something about this?
    – am i okay just because my doctor sent me on my way or was she negligent?
    -can this proteinuria cause problems in the future or develop into a disease eventually?
    – would having proteinuria itself affect daily life? because i’m always tired and i wonder if this has anything to do with it
    -any other helpful comments

    to perhaps help you answer my question better; a little health info about me:

    -5’6″. 120lbs.
    -17 at time this occured. currently 18
    -no drug use, do smoke cigarettes
    -no health history except for asthma and iron deficient anemia
    -family history includes heart disease, diabetes, high cholesterol, one case of teen leukemia, survived. other than that no other cancer, no kidney or strange diseases, no obesity.

  7. Sophie

    How would you diagnose this woman?
    Ruth is a 37 y/o white female who complains of feeling overwhelmed and unable to cope. She speaks in a soft, halting voice, avoids eye contact and her arms and legs are noticeable shaking. She notes feeling nervous, worried and unable to handle the responsibility of caring for her two young children ages 5 and 3. She reports having little patience with them, quickly becoming irritable, tearful and needing to retreat to her bedroom while the children are left to watch TV. She is filled with shame and guilt. “I love my children but I’ve become a terrible Mother.” “Because of me they will grow up with many issues and problems.” She is hopeless that things can change for the better in the future.

    Ruth also says she has frequent backaches, lack of appetite and little energy. She typically awakens several times during the night and has a desire to sleep during the day. She claims to become tired after performing the simplest of tasks. She rec’d a battery of medical tests from her family physician due to her weight loss, muscle aches and lack of ability to concentrate. She worried that it might be lupus or leukemia. All tests were negative.

    Asked when her symptoms began, Ruth has difficulty answering. She claims to have always been tense but claims to have not been functioning well since her youngest child; a girl began walking at about 11 months of age. She worries about her daughter because she seems ‘high stung’ – like me. She sees her son, the oldest as ‘laid back’ and content, like her husband.

    Ruth is the youngest of three children, born and raised in Philadelphia. While she was always close with her brother (5 years her senior), she has had only a fair relationship with her sister, who is two years older. She always felt that her sister was more attractive, smarter and more capable than she. She describes her father as cold, critical and domineering, never giving her praise or recognition. “He never made me feel valued.” “I guess I didn’t deserve his love.” Her mother was supportive and loving but subservient to her husband. Ruth sees her Mother as a chronic worrier who felt inadequate and coped poorly. It should also be noted that her brother, a physician is being treated for Obsessive Compulsive Disorder.

    The client says she did well in school, receiving a degree in journalism from a small, liberal arts college. She worked for one newspaper but has not worked outside the home since having children. She admitted to feeling uncomfortable being home alone for fear that something may happen that she cannot handle. She knows that her lawn/garden needs to be landscaped but neglects to initiate the process due to her lack of confidence and fear of making mistakes.

    Until her marriage 7 years ago Ruth reports a series of unsatisfying relationships with men. She did not get her needs met, was frequently mistreated and once physically abused. Feeling worse and worse about herself, her need only increased to be in a relationship inevitably leading to regret and disappointment. She feels her husband treats her well and can’t wait for him to come home from work every day. She claims he is the best man she has had, but she is afraid she “doesn’t deserve” him and worries that she will lose him because of her problems. She emphasizes his strength and claims she “would be lost without him.”

  8. Abuela Paloma

    Do you feel like the Physicians work for you or the other way around?
    My neice has Lupus Erythematosus and Fibromyalgia. She is always in severe and I do mean severe pain. She had been seen by a certified nurse practitioner and then began seeing a new physician and always had a Rheumatologist. Because she felt as if she wasn’t getting along with the CNP, she sought out a new physician. She visited the new physician 4 times, got her medications and had just sent a letter to the CNP to inform her that she no longer wanted to be a patient. The CNP however beat her to the punch. She received a termination letter from the CNP basically letting her go in 30 days because of communication breakdown and narcotics abuse. Now, from what my neice told me, she informed the new primary of her previously seeing a CNP and that she was not satisfied. However, you know how it is when you visit a physician. You all might mesh and you might not. At any rate, she had refills on prescriptions from all three physicians and she got them filled, not all at the same time. But, she was so hurt because she stated that morally, her CNP had an obligation to speak with her if she felt that something was wrong, and I agree. She had been seeing this CNP for over 6 years and truth be told, was only seeing her because of a friend of the family. She is known in the streets to give you whatever you want. However, my neice wasn’t seeing her for that. I felt that the CNP threw her away as if she was a piece of trash. A similar situation happened with a friend of the family and through the Michigan Automated Prescription System, the state of Michigan notified her primary to pull a report from this system. The system showed that she was seeing another physician and getting her prescription with him. Because of her being red-flagged of sorts, she too was also terminated from her primary thus causing her to be so despondent that she blew off her head with a .357 magnum. Because of the doctors termination letter, she tought that she would never ever be able to find another doctor. Okay, now my neice has the new primary, whom she just loves and has her Rheumatologist as well. But yesterday, she asked me. Abuela (Although I am her aunt), do you think that I will get in trouble? My answer to her was a resounding NO! You have a right to go and see any doctor that you want. I did of course reiterate that out of fairness to the new physician, you should let them know if you still have prescriptions and/or any medications that still need to be filled. I feel bad for her because her conscience is soooo heavy. If it where not for patients, physicians would not be in business. Why do they act as if they are doing us a favor and why do they often treat everyone as potential drug addicts? My neice’s fingers are so turned and twisted, you would think that she has Rheumatoid Arthritis and I know that Lupus and RA are in the same family. She is scared to go back to her Rheumatologist because of this new Mapping system. However, I told her that she has every right to talk with her doctor, whether it’s doctor 1, 2 or 3. And if her Rheumatologist no longer wants to treat her then dammit, find someone else. My father always said, one monkey don’t stop no show! What do you all think yahoo community? Did I give her the correct information. I love her and would never intentionally steer her or anyone wrong.

    1. ZXCV


      Oh.. what a poor girl.. How old is she?
      Some physician and nurses are always like that!! But hack that, no need to worry, you can always have another Physician and you can always go and see any Physician you want any time!
      Yes, Patients have the right to change their doctors if they don’t want any more.
      Um, Good to hear that that girl has a new primary now.
      Hope everything would be okay with that Rheumatologist and her new primary.

  9. Flor Rosa

    Michigan Automated Prescription Program?
    I recently lost my youngest child (daughter) through suicide. She was just a beautiful, kind-heartted but depressed young lady. She not only left her family but she also left 3 young children ages 9, 10 & 11.

    Approximately 1-month ago, she received a Physician termination letter from her primary (who is a Certified Nurse Practitioner) stating that she was being released (in 30-days). It also stated that she would continue to be treated for things that were deemed only “medically necessary”. Once I received the call (from her) in Texas, I immediately came to Michigan because she was so distraught. She began thinking that she was about to be arrested and go off to prison. My husband and I just could not calm her down. At any rate, after taking the letter to several of my physician and pharmacist friends here in the Michigan area, we were told that basically she could in fact go to another doctor and still obtain her prescriptions. We were also told that this system is not a mandate and everyone doesn’t use it. They also informed us that for the physicians, pharmacists and other health professionals that use it, because of HIPPA Laws not just anyone can go in and look up a patients information.

    At any rate, my daughter had Lupus Erythematosus, Fibromyalgia and had more recently been treated for a Cancerous Tumor in her lower Intestines. She way on a myriad of medications including the narcotic Tylenol #4. Because she was so depressed, a lot of the medications she would not take because she didn’t like feeling “loopy or down”. She had a Rheumatologist and most recently had been trying out a new physician because she was going to leave the Certified Nurse Practitioner and transfer over to the new physician. Now, to sum it all up, I know that physicians have a right to dismiss patients because of whatever suspicions and/or reasons. I am just so furious because my daughter had been telling her primary that her pain was so severe and it was just not word of mouth. Her blood pressure was always high, swelling all over her body, hand and feet disfiguration, severe, severe depression and other medical symptoms. She had also been given something called Neurontin to which I am told is a muscle relaxer. I cannot tell you how many trips we have made to the Michigan area to assist my daughter in her time of need. Additionally, she was not the type of person who felt-sorry for herself. She had been working her entire life and was 6 classes from obtaining her Masters Degree. She was also raising her children on her own (widowed) and had only began not working in 2004 and thats only because she had become so ill that her dad and I encouraged her to apply for the Michigan State Disability Program.

    I know that any answers I receive will not bring my child back, but I also have a right to my opinions and one of them is that I think that this MAPS Sytem is flawed. Does the patient not have a right to explain their side of the story, whatever it is, addiction or otherwise? If there is a suspected problem what responsibility does the Health Practitioner have moral or otherwise? Do you just turn the person in to the Gestapo (not trying to offend anyone-please forgive if I did) (MAPS System)? If a patient is turned in then what, what happens after that, what is the patients rights?

    Obviously, my daughter had began obtaining too many (narcotic) prescriptions in a month and I do agree that it was too many. But, how many narcotics is one allowed in a month? In Texas, my neighbor receives 120 Vicodin from one physician and 90 Tylenol #3 from another. I realize that this is not Texas but, I am just saying. Furthermore, since all pharmacy computers are not linked and because she did received them, I am pretty sure if was very easy for her to do so if it had not been for this MAPS System. Yahoo Memebers, please note that I am not condoning the act or otherwise. I have been blessed to live my 61 years in a fairly healthy state. I have not had to walk in her shoes. One thing I do know for sure is that, she was not a drug abuser, drug addict or drug seller. And yes, maybe I am being a little defensive, but I have lost my child, FOREVER!

    The MAPS System as we were told, is only for the use of health care providers. A “patient” is not allowed to receive or request their own information from this system. I would like to know once your name comes up in this system, is the patient red or blacked-flagged of sorts? Michigan, like a lot of states has problems with drug abuse, drug addicts, dope dealers, etc. You will always have someone who abuses and finds a way around the system. In my opinion, the system is a double edged sword. Good for seeking out drug abusers and flawed because it will turn in everyone who may or may not be an abuser. The physicians are somewhat turning into police. Are their Michigan Laws against “Doctor-Shopping”?.

    I would like to thank anyone who can assist me

    If I didn’t state, I

    1. Jim Bob

      The doctors will do everything & anything to cover their backs.

      In MI at a medical malpractice lawsuit trial only MI doctors can testify against other MI doctors. You won’t find many, if any, MI doctors that will testify against their own kind.

  10. Dianna

    Is it common for Raynaud’s phenomenon to occur on only one side of the body?
    My friend has been through MRI’s, CT scans, blood test galore, several cardiologists, neurologists, family physicians, ER trips, etc. She has tingling/numbness of her right arm and leg and they will turn blue and she will not be able to grasp things or bend her knee (will bend if you do so manually, but she cannot walk normally when it occurs). A little bit later, sometimes 10 minutes and sometimes 5 hours, her skin color will return to normal and she will have functioning back.

    She’s been tested for MS, Lyme Disease, cardiovascular problems, Lupus, etc. Everything keeps coming back negative and that “she’s fine.” But, she is not fine because she will lose her ability to use her right foot and/or right arm and hand several times during the day.

    So, she is thinking she may have Raynaud’s, but we both wonder if it can only occur on one side of the body?

    In the beginning, they thought she was having a stroke, but that was ruled out.
    This began in November and she has only had two normal functioning days since then.
    She’s obviously seen many doctors, as I mentioned in my post.

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