Tips for Winning a Fibromyalgia Disability Case

Discussion in 'Fibromyalgia Main Forum' started by JLH, Sep 19, 2005.

  1. JLH

    JLH New Member

    by Jonathan Ginsberg, Attorney - Atlanta, Georgia

    In a disability case, you need to prove one thing - that you are not able to work. If you remember nothing else about Social Security disability, remember that your capacity for performing work is the only thing that matters to a Social Security judge.

    Your ability to perform an easy job - the main issue:

    Your underlying medical condition - fibromyalgia or any other medical problem, is only important to the Social Security Judge if your symptoms limit you from performing a job 8 hours a day, five days a week. Thus, for example, I have won cases in the Atlanta hearing offices in which my client’s medical problem was a moderate, functional heart defect, but in this client’s case, her anxiety about her condition was so severe that she could not concentrate at work. Similarly, I have seen judges deny cases in which a claimant had three herniated discs, but was able to function in a minimally demanding job because of an unusually high pain threshold.

    In most cases, the judge’s decision really boils down to his/her decision about whether you could hold down a simple, sit down type of job that requires no training, that allows you to sit, stand and adjust your position and is not production oriented.

    In fact, in most hearings, the Judge will call a “vocational expert” to testify about work you have done in the past and about simple, minimally demanding jobs that exist in the national economy.

    Comprehensive Medical Records - a key to winning:

    As a claimant’s lawyer, my job is to identify medical records that suggest work limitations. In many cases this means I need to review all of the medical records, then create a functional capacity checklist that includes both the limitations associated with your particular case and the impairment categories used in Social Security cases. We then ask your doctor to complete the checklist for submission to the Judge. Note that we do not ask the doctor to decide if you are “disabled” - that is a legal decision for the Judge. Instead, we ask your doctor to help “translate” his medical conclusions into specific work limitations.

    What is the Judge thinking?

    There is a perception that Social Security disability cases based on fibromyalgia are difficult to win. It is true that some judges have a problem acknowledging a medical syndrome (not a “disease”) that cannot be detected by a blood test and that can have a wide range of symptoms. Click here for the clinical definition of fibromyalgia as set forth by the American College of Rheumatology. Nevertheless, my experience has been that you can get creative in offering a Judge a theory of disability.

    Not too long ago, for example, I represented a fibromyalgia client before a Judge who called a psychiatrist as an expert witness. The Judge granted benefits on the ground that my client’s “fibro fog” was equivalent to a chronic state of anxiety - a psychiatric condition. Two weeks later, I tried a different fibromyalgia case before another Judge in the same hearing office - this Judge awarded benefits (correctly in my opinion) on the basis of a combined impairment - recognizing the combined effect of fibromyalgia’s impact on my client’s physical and mental condition. Yet a third Judge in this same hearing office granted another case on the basis that my client’s condition was equivalent to an orthopedic condition - severe arthritis.

    Obviously, I am most interested in winning cases for my clients, although I do find it interesting that some judges must really struggle to find a legal basis to award benefits. Further, I think it is fair to say that judges in big cities like Atlanta are probably more likely to see fibromyalgia patients supported by knowledgeable physicians and long treatment histories.

    Fortunately, even if judges don’t understand the condition, many will honor the opinion of your treating physician, especially if you have a long and continuous treatment record (the legal term for a thorough medical history is a “longitudinal treatment record”).

    Focus on all of your symptoms:

    I find that it is important to focus on fibromyalgia symptoms other than just generalized body pain. Remember, judges see claimants every day complaining of “pain all over.” These cases are not fibromyalgia, but pains caused by arthritis, obesity, poor nutrition, mild diabetes, etc. Judges are people, and they tend to discount complaints they here again and again. As you may know, fibromyalgia often produces other identifiable symptoms, including loss of balance, digestive problems, irritable bowel syndrome, slurred speech, vision problems, depression, swelling, memory loss, cognitive loss, fatigue, sleeplessness, etc.
    Many fibromyalgia patients get used to living with these symptoms and fail to mention all of them to their doctors or to the judge. One technique I recommend to my clients is to obtain a calendar and keep diary notes about how you feel and what symptoms you experience each day. Make lists. Ask for your spouse’s or children’s observations. It has been my experience that judges may not want to grant your case based on overall body pain, but may feel more comfortable focusing on your digestive or balance problems.

    Make the judge’s (and your lawyer’s) job easy!

    You might find it helpful to read a Judge’s decision in a fibromyalgia case. This case involved a 38 year old woman with an extensive job background who suffers from fibromyalgia as well as numerous gastrointestinal and other complications. Note that the Judge focuses on my client’s work history and that she is very credible because she has been seeking a medical solution to her problem. This file is in Adobe pdf format. Click here to read two of my recent favorable fibromyalgia decisions.

    Deciding on a start-date for your disability:

    I also have found that many of my fibromyalgia clients were ambitious and hardworking in their careers and jobs. Subconsciously or otherwise, many Judges realize that few claimants would trade the money and job satisfaction of a challenging career for the fixed income offered by Social Security disability. I, therefore, usually encourage my clients to testify about what they did before they stopped work, how they tried to hang on, even while fighting increasing levels of pain and fatigue, and how they would greatly prefer their former way of life.

    You may also be able to “push back” the starting date for your benefit payments if your last few weeks or months of work were not in the nature of “competitive employment.” For example, if your boss allowed extra absences or changed your job description, the judge may find that you did not engage in competitive work activity. Similarly, if you previously applied for benefits, received a denial, then tried unsuccessfully to return to work, you may be eligible for months or years of past due benefits. Issue related to amending your onset date are beyond the scope of this article, but should be evaluated.

    About Jonathan Ginsberg - Jonathan is a practicing Social Security attorney in Atlanta, Georgia, and he is the publisher of two "how to" Social Security help books - the Disability Answer Guide (how to fill out adult Social Security disability forms) and the Child SSI Guide (how to fill out child Social Security disability forms). His comments and opinions about "Tips for Winning a Fibromyalgia Case" should not be considered legal advice as every Social Security disability case is different and depends on your individual case information.

  2. luv2float

    luv2float New Member

    Thanks for the helpful info.

    I've been denied twice and am currently waiting for a trial date. I'm 48 with fibro, depression, ibs, back problems, cfs and high blood pressure.

    My problem now is that all my doc visits, tests were done in 2001/2002 when my husband had insurance. Now without it I can't afford to go to any doctors/specialists which my atty says I need to do on a regular basis in order to establish creditability.

    Do you have any suggestions on how to get around this? As you know fibro has no specific treatment, just meds, exercise, life style chgs, etc. My family doctor regularly every 3 to 6 months provides me with my refills.

    My atty has threatened to drop my case unless I start seeing some specialists. I don't know what to do since we cannot afford this.

    Any ideas? Thnks.
  3. JLH

    JLH New Member

    If you don't have enough work credit to apply for SSDI, you will probably keep getting denied.

    If your income is low enough, you may be able to qualify for SSI which is based on your income. I would make a call to Social Security, tell them what your income is, and ask if you qualify for SSI. Also ask them how many work credits you lack to qualify for SSDI.

    Good luck,
  4. JLH

    JLH New Member


    Tell your attorney that he if wants you to go to specialists, that he will have to pay for them!!! They do not realize that if you do not have current insurance coverage, that a person just can NOT afford to pay the prices for specialists, and then do all the tests, etc., that they want to do!!

    I think you could probably get by with just your family doc that you are seeing, especially if he is willing to help you.

    This is what I would do:

    If you know how to use word processing programs like "Word" or "WordPerfect", I would prepare some documents to submit to both your family doc and your attorney--and tell your attorney that you want these documents submitted to the judge at your next hearing!!!

    Document #1:

    Prepare a "Summary" of what you have done since you first filed for SSDI. For example,

    * list of tests have been done and the results of them (those that you mentioned in 2001/2002, and have copies of them attached).

    * list the name/address of all doctors that you have been to during that time

    * make a paragraph stating that you have not be able to go to any more specialists because you lost your insurance coverage as of (what date) and you do not qualify for Medicaid to cover specialists.

    • indicate any other major medical problems that you have experienced since first applying for SSDI, as well as any other outpatient testing, or hospitalizations.

    • indicate any other important information that you want your doc and the judge to know.

    Document #2

    You indicated that you have fibro, depression, ibs, back problems, cfs, and high blood pressure.

    Make a list of all of your problems. Of the six problems that you indicated, you can list many, many symptoms (problems) that each illness entails. You need to list each “symptom” as a health problem. This way, you have a really long list of health problems! Social Security needs to be convinced that you have so many health problems that you are unable to work. The best way to do this is to spell out each problem in detail. Every little complaint that you have with your health, you need to list.

    I helped my sister with a list of her symptoms for her SSDI application. Here is what she listed—maybe it will show you what I mean: (She has COPD, asthma, cfs, arthritis, etc.)

    (1) Coughing. The severe coughing attacks occur all day long as well as all during the night due to COPD. The cough is so uncontrollably violent that I can not catch my breath, not mention to talk. I feel like I am suffocating and can not get any air and that I am going to die if I cannot catch a breath immediately. Coughing so much causes terrible chest pains and leaves my chest painful for hours after the coughing spell. The coughing spells also cause dizziness, a flushed feeling that overwhelms me with heat and severe perspiration, followed by a feeling of extreme weakness. Then, another attack occurs. The cycle just keeps repeating itself. I have been out in public where I have coughed so hard that I vomited. (The change in temperatures from inside to outside, to the car, etc., always results in a coughing fit that lasts up to 15 minutes. Every cough results in urine leakage, or more than just a leak, and passing of gas, which are discussed below.) I have been diagnosed with COPD.

    (2) Shortness of Breath. The shortness of breath causes many of the same feelings as the coughing does--I feel like I am suffocating and can not get any air and that I am going to die if I cannot catch a breath immediately. The shortness of breath always happens during and following a coughing spell. In addition to COPD, I have also been diagnosed with Asthma. After any exertion, I am out of breath. The feeling of helplessness is overwhelming when I am unable to breathe and feel like I just took my last breath. My weight also contributed to my shortness of breath. I currently weigh 360 lbs. and carry a lot of weight in my chest and stomach creating difficulty in breathing.

    (3) Chest Pains . As described above, my chronic coughing causes me terrible chest pains and leaves my chest painful for hours after the coughing spell. The chest pains are so painful that my doctor had me take numerous heart tests as well undergo a heart catherization for him to be certain that the chest pains were as a result of the chronic coughing and not from a heart problem.

    (4) Pain. Affected areas are neck, shoulders, arms, wrists, hands and fingers, lower back, hips, legs, knees, ankles, and feet. Pain is excruciating and incapacitates me. My pain level is intolerable at times. I hurt so badly that I cry many times a day. My hands and wrists hurt so badly that I can’t even peel potatoes or thread a needle. I used to be good at using a ten-key calculator-— can't even do that now. My arms and shoulders hurt to terribly that I can’t hold a hair dryer to dry my hair, let alone try to use a curling iron. I can’t hold my arms up long enough to change a light bulb in my house. (Bad example, because I can’t change a light bulb anyway, because I can not get up on a stool and stand up long enough.) I stay in a wheelchair about 90% of the time. Wheeling myself around the house worsens the pain in my hands, arms, and shoulders. I am in constant pain. My lower back causes me so much pain that I can not stand up more than 5 minutes and can not walk more than a few steps. My weight aggravates the pain in my lumbar spine and legs and feet.

    (5) Joint Pain. My joints are affected my arthritis which cause s great stiffness and soreness in addition to the pain. It is hard to move around due to being so stiff and aching in all my joints. Sometimes my fingers and hands are swollen and not easily moveable. Being confined to a wheelchair intensifies the stiffness, soreness, and pain.

    (6) Muscle Pain. I have this deep muscular aching, burning, gnawing, throbbing, shooting, stabbing, fibromyalgia-type pain that hurts every muscle in my body every minute of the day and night.

    (7) Inability to Sleep. I feel like I have been run over by a Mack truck or a semi all of the time. This feeling comes from a combination of my symptoms—the inability to obtain quality sleep as well as my constant fatigue, weakness, and pain. I have trouble falling asleep and staying asleep, as well as trouble breathing while lying in bed. Pain wakes me up when I do finally fall asleep and I must continually toss and turn to find a position where a part of my body is not in pain. Coughing spells also wake me up and keep me awake. I have to continually get up to go to the bathroom. I find it hard to stay awake and concentrate the following day due to not enough quality sleep—my head always feels “spacey” and fuzzy—and my eyes burn. I have been diagnosed with Sleep Apnea and sleep with a CPAP machine and oxygen.

    (8) Fatigue and Weakness. I feel like the fatigue has sucked the entire life out of my body. It is overwhelming and debilitating. I feel like I do not have enough energy or strength to stand up or walk even if I could do that without pain. I have been diagnosed with Chronic Fatigue Syndrome.

    (9) Inability to Walk and Stand. I use a wheelchair 90% of the time. Can only walk a few steps at a time and can not stand more than 5 minutes at a time. How does this symptom make me feel? Awful. I can’t walk and stand due to a combination of my problems-—the pain in my low back; the pain in my legs, knees, and feet; and my weight. One of the reasons that I have to use a wheelchair is pain, and then using the wheelchair causes more pain (in my upper body and stiffness/soreness). This inability of walking and standing on my feet also adds to my depression and anxiety. I feel like I am trapped in my home.

    (10) Cognitive Dysfunction. I can not concentrate on anything. I have trouble with short-term and long-term memory. I go into a room to get something and can’t remember why I went into that room. My head feels so fuzzy all of the time that I cannot drive many times—my brain feels as fatigued as my body. I feel dizzy and lightheaded a lot due to lack of quality sleep.

    (11) Depression. I don’t like being depressed. But I can’t help myself. I can’t seem to overcome these feelings. I am physically and mentally not able to work. This has created quite a financial burden for my family and me. The amount of pain that I must tolerate each day depresses me, as does my problem with urinary incontinence. Not being able to go anywhere because of the urinary urgency, leakage, and worry about an offending odor is depressing. When you have urgency and are unable to move quickly, like I am, is a problem. Waking up every day after not being able to sleep, not being able to quit coughing long enough to breathe, to overcome the feeling that you can die when you can’t breathe, and the feeling of hopelessness is depressing. Having to continually ask my family and friends to help me do things, to help cook for me, to take me places, to clean my house, and to help me financially is depressing. Being extremely overweight is more than just depressing.

    (12) Anxiety. The feelings of anxiety make me feel like those that make me depressed. I hate to go the grocery store because I am afraid of dropping things before I get them in my basket. My hands and arms are so weak at times, that I drop a lot of stuff. (I also have been diagnosed with Carpal Tunnel Syndrome that probably contributes to the wrist/arm weakness.) I am also afraid that I might have a problem with my urinary incontinence, not be able to make it to a public restroom in time, and end up wetting myself. The embarrassment and humiliation would be too much for me to bear. I get overly anxious about what people will think about me due to my size. I am so afraid of snide comments, jokes, stares, etc. that I sometimes get afraid to leave my house and/or answer my door. Also contributing to my anxiety is my inability to be able to work and provide for my family as well as the financial burdens it has placed on my family and me. I have had to sell most all of my possessions. My quality of life is going downhill fast. My level of anxiety seriously limits my daily activities.

    (13) Urinary Incontinence. I have daily spasms and bladder irritability causing urinary urgency and extreme incontinence. This makes me very depressed and adds to my level of anxiety as explained above. In addition to the financial burden already upon me by not being physically and mentally able to work, the cost of products for my incontinence (feminine pads and diapers) is astronomical. I have had surgery and done exercises, but neither has helped. When I was in the workplace, urinary incontinence is a most distressing, embarrassing, and humiliating problem. It’s nearly impossible to wait for the scheduled break times in any job I’ve had for the last several years. I’ve had accidents on the upholstered chairs at my workstations, and, in a previous position, I was certain that it played a factor in my lay-off. I wear a urinary pad at all times and a diaper when I go to bed. During my last two years without being able to work and receiving only $305.00 a month from welfare, I’m forced to not to leave my home for this reason as well, because I had no money to get pads or diapers. I can not begin to describe the horror this condition played on me when I had each knee replaced. I don’t visit family or friends, eat out, or even drive 80 minutes to see my own daughter for I know I can’t make it there. I don’t have company because my furniture and bed constantly smell of urine. I’ve had three bladder surgeries, even stapled it to my spine to no avail. I’ve begged my doctor just to catheter me for good but they say diapers are my best bet. I’m sure they can afford that – I cannot. Most depressing is that I fear intimacy and the companionship of a man, so I have no sex life whatsoever. In addition, wearing a pad 24 hours a day, 7 days a week and sitting in a wet pad has produced skin irritations that I have to continually treat and have even had to have an abscess surgically removed.

    (14) Irritable Bowel Syndrome. I have chronic diarrhea and constipation, abdominal pain, abdominal gas, and nausea. These problems combined with my urinary incontinence make it extremely hard for me to leave my house. I can not move well, or quickly, and it is hard to find a public restroom at the exact minute that I need one.

    (15) Headaches. I have recurrent migraine and tension-type headaches. I have a headache at least three days a week. I get headaches that seem like the come straight up my back, between my shoulder blades, and neck. They make my neck and the back of my head hurt so extremely bad that I think my head is going to explode. Many of the headaches that I get are the “sick” headaches that have me vomiting. I must stay in bed in a dark, quiet room to get rid of them. The light, noise, and movement make me sick.

    (16) TMJ in Jaw. I feel pain in my jaws (in the joint under my ears) when I eat and open my mouth wide. I also experience dizziness at times.

    (17) Circulatory Sensitivity to Temperature and Moisture. Hands, arms, feet, legs, and face tingle and become numb, like in Raynauds Syndrome and Neuropathy.

    (18) Hearing Loss. I have experienced a hearing loss and have problems hearing what people tell me. I ask people to repeat what they have said so many times, that it is embarrassing Then, after they repeat what they said, I can’t remember what they said to do.

    (19) Morbid Obesity. I currently weigh 360 lbs. and carry a lot of weight in my chest and stomach creating difficulty in breathing. My weight also puts a burden on my frame and artificial knees which causes severe back, hip, leg, and feet pain. It is extremely painful for me to stand on my feet to transfer from my wheelchair to my walker to get to places in my house where the wheelchair will no go (like the bathroom). In order to cook, I must transfer to a 4-foot stool so that I can reach the stove (my wheelchair is to low). It is hard to contain my excess weight and balance on a stool, and painful for my back to try to climb on to the stool. It is hard to go out in a public place and find seating and other accommodations to fit my frame.

    (20) Acid Reflux. Although GERD (acid reflux) is not disabling by itself, it causes me great discomfort and contributes to my stress level. If I do not take my medication prescribed for this problem, I have constant heartburn, stomach burning, and nausea.

    *end of symptoms*

    As I said, take this list to your doc and ask him if he could write a letter either to your attorney, or addressed to the Soc. Sec. judge (whichever is appropriate) stating that these “problems” are a true reflection of your medical condition and that he approves and totally supports your application for disability, etc.

    I hope this info has helped you some.


    P.S. I will send you another list of Symptoms that is also really long. I went send it in another "reply" so that this is not sooooooo long - it's already long enough!
  5. JLH

    JLH New Member


    You can also go through the following lists for fibro/cfs and see if you have any of these problems that you can add to your personal problem list to elaborate on for your SSDI trial coming up:

    There are 2 separate lists here -- they are long, but taking the time to go through them will benefit you on making your own list:



    Master Symptom List for CFS, FMS, CMP & Lyme Disease

    Note on Symptoms: many of these are symptoms common to other diseases. Getting a proper diagnosis for CFS, FM, CMP, Lyme, and other tick-borne diseases is as much ruling out other diseases as it is looking at the clues in dozens of tests and the actual physical exam.

    By Melissa Kaplan, The Carousel Network, May/June 2003


    Abnormal sensitivity to hot or cold
    Allergies (nasal, other; new, increased or worsening)
    Canker sores (frequent)
    Chills and/or shakes when hungry (may occur instead of feeling hungry)
    Cold hands and feet
    Feeling hot or cold often
    Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F / 37.5-38.6 C), chills, extreme fatigue after minimal exertion
    Hair loss (alopecia)
    Herpes simplex or shingles rash
    Increased susceptibility to infections
    Low-grade fevers
    Low blood pressure (below 110/70)
    Low body temperature (below 97.5)
    Lymph nodes painful, swollen (in neck; under arms)
    Night sweats (not related to menopause or fever)
    Orthostatic Intolerance (neurally mediated hypotension)
    Reactive hypoglycemia and insulin resistance
    Thirst, increased
    Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature
    and body temperature; low body temperature (below 97.6 F / 36.4 C)
    Thyroid inflammation (acute thyroiditis; hypothyroidism; Hashimoto's thyroiditis)


    Cardiac abnormalities (mitral valve prolapse; myocarditis; tachycardia; palpitations;
    Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
    Heart attack
    Heart palpitations
    Heart pounds so hard it shakes body, bed
    Pulse skips
    Serious rhythm disturbances of heart
    Sighing, frequent, not related to mental/emotional state


    Abnormal CAT, MRI, and/or SPECT scans
    Alcohol intolerance
    Aseptic meningitis
    "Brain fog"; inability to think clearly (often referred to as “fibro fog”)
    Difficulty moving tongue to speak
    Diminished or absent reflexes
    Fainting or blackouts; feeling like you might faint
    Headaches (frequent, severe, recurring)
    Hearing fluctuations (sounds fade then return)
    Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV)
    Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)
    Libido (decreased)
    Light-headedness, feeling spaced-out
    Migraine headaches
    Muscle twitching
    Noise intolerance
    Paralysis or severe weakness of limb
    Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities
    Seizures; seizure-like episodes
    Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance)
    Severe muscle weakness
    Syncope (fainting)
    Tinnitus (ringing/noises in one or both ears)
    Touch or weight of clothing on or against body causes discomfort or pain
    Tremors, trembling


    Becoming lost in familiar locations when driving
    Difficulty with simple calculations (e.g., balancing checkbook)
    Difficulty expressing ideas in words
    Difficulty moving your mouth to speak
    Difficulty making decisions
    Difficulty following directions while driving
    Difficulty remembering names of objects
    Difficulty remembering names of people
    Difficulty recognizing faces
    Difficulty following simple written instructions
    Difficulty following complicated written instructions
    Difficulty following simple oral (spoken) instructions
    Difficulty following complicated oral (spoken) instructions
    Difficulty integrating information (putting ideas together to form a complete picture or concept)
    Difficulty putting tasks or things in proper sequence
    Difficulty paying attention
    Difficulty following a conversation when background noise is present
    Difficulty making and/or retrieving memories (long/short-term memory deficits)
    Difficulty understanding what you read
    Easily distracted during a task
    Feeling too disoriented to drive
    Forgetting how to do routine things
    Forgetting the use of common objects (such as, what to do with the shampoo when you are standing in the shower)
    Forgetting how to get to familiar places
    Impaired ability to concentrate
    Losing your train of thought in the middle of a sentence
    Losing track in the middle of a task (remembering what to do next)
    Poor judgment
    Switching left and right
    Slowed and/or slurred speech
    Stuttering; stammering
    Transposition (reversal) of numbers, words and/or letters when you speak and/or speak
    Word-finding difficulty
    Using the wrong word


    Bloating; intestinal gas
    Decreased appetite
    Digestive chemicals (acid, enzymes) reduced or absent
    Esophageal reflux; heartburn
    Frequent constipation
    Frequent diarrhea
    Food cravings (especially carbohydrates, sweets)
    Food/Substance intolerance
    Liver function impaired; mild abnormalities
    Increased appetite
    Spleen tender or enlarged
    Stomach ache, cramps
    Weight gain or loss


    Bite your cheeks or tongue frequently
    Bump into things frequently
    Difficulty discriminating printed matter despite proper vision correction
    Distances (difficulty judging when driving; when putting things down on surfaces)
    Dizziness or vertigo
    Dropping things frequently
    Dysequilibrium (balance problems)
    Impaired coordination
    Loss of balance when standing with eyes closed
    Perception (not quite seeing what you are looking at)
    Some patterns (stripes, checks) cause dizziness
    Spatial disorientation
    Staggering gait (clumsy walking)
    Words on printed page appear to jump off page or disappear when staring at them


    Acuity changes not related to prescription changes
    Blind spots
    Blurred vision
    Diminished visual acuity in absence of actual vision change
    Drooping eyelid
    Double vision
    Eye pain
    Flashes of light perceived peripherally
    Optic neuritis or atrophy
    Oscillopsia (image jiggles)
    Prescription changes more frequently
    Pressure sensation behind eyes
    Red and/or tearing eyes
    Retinal damage
    Slowed accommodation (switching focus from far to near, near to far)
    Spots or floaters not related to migraines
    Swelling around eyes
    Uveitis and/or iritis
    Wandering or lazy eye

    Bell's palsy (facial paralysis, one or both sides)
    Bruxism (grinding/clenching teeth)
    Canker sores
    Dizziness when you turn your head or move
    Dry chronic cough
    Dry eyes, nose and mouth (sicca syndrome)
    Pain in ears, palate, gums
    Periodontal disease
    Prickling pain along skin of jaw
    Problems swallowing, chewing
    Runny nose in absence of cold, allergies
    Sinus infections
    Sore spot on the top of your head
    Temperomandibular Joint Syndrome (TMJ)
    Unexplained toothaches
    Xerostoma (dry mouth)


    Arthritic pain that migrates from joint to joint
    Carpal tunnel syndrome
    Frozen shoulder
    Intermittent joint swelling
    Joint aches (arthralgia)
    Joint pain, without redness or swelling
    Loss of tone
    "Lumpy, bumpy" long muscles
    Morning stiffness
    Muscle aches (myalgia)
    Muscle pain, stiffness, weakness
    Pyriform muscle syndrome
    Reduced range of motion
    Stiff neck
    Writing causes pain in hand, arm shoulder


    Abdominal pain
    Chest pain
    Debilitating generalized pain (arms, neck, shoulders, hips, legs, etc.)
    Muscle pain (all over your body)
    Painful tender points (FMS: 11 out of 18 tender points)
    Shooting or stabbing pains


    Abrupt/Unpredictable mood swings
    Anxiety or fear for no obvious reason
    Appetite increase/decrease
    Decreased self-esteem
    Depression or depressed mood
    Feeling helpless and/or hopeless
    Feeling worthless
    Frequent crying for no reason
    Helpless/Hopeless feelings
    Inability to enjoy previously enjoyed activities
    Irritability; over-reaction
    New phobias/irrational fears
    Panic attacks
    Personality changes (labile, irritable, anxious, confused, forgetful)
    Phobias (irrational fears)
    Rage attacks; anger outbursts for little or no reason
    Suicidal thoughts or suicide attempts


    Acute or abnormal reactions to medications
    Alteration in taste, smell, and/or hearing
    Chemicals (alcohol, medications, perfumes, smells; lower tolerance for)
    Food sensitivities
    Increased perception of and sensitivity to noise
    Light sensitivity
    Sensitivity to odors (able to detect and/or react in concentrations far lower than before and that healthy people cannot smell)


    Abnormal scarring
    Acrodermatitis Chronica Atrophician
    Blotchy or mottled skin
    Bruise easily
    Bruises may take longer to appear, and/or longer to fade
    Bull's-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)
    Dermographia (minor scratch pressure on skin leaves vivid red welts)
    Dry, itchy skin
    Easily scar
    Eczema or psoriasis
    Fragile nails
    Frequent skin irritations
    Lymphadenosis benigna cutis
    Nails that curve under or downward
    Overgrowing connective tissue (ingrown hair, adhesions, thickened/split cuticles, cysts, fibroids)
    Painful skin (abnormal/excessive pain when scratched or rubbed)
    "Paper" skin (feels fragile, tissue-thin when rubbed)
    Rashes on body, face
    Vertical ridges or beads in nails


    Abnormal brain activity in stage 4 sleep
    Altered sleep/wake patterns (alert/energetic late at night, sleepy during day
    Difficulty falling asleep
    Difficulty staying asleep (frequent and/or prolonged awakenings)
    Hypersomnia (excessive sleeping)
    Myclonus (restless leg syndrome; occasional jerking of entire body)
    Nightmares (frequent, extremely vivid and/or disturbing)
    Unrefreshing/Non-restorative sleep


    Decreased libido
    Discharge from breast or galactorrhea
    Frequent urination
    Infant: premature; low birth weight; low muscle tone; failure to thrive
    Interstitial cystitis
    Miscarriage or stillbirth
    Painful intercourse
    Painful urination or bladder
    Pelvic and/or rectal pain
    Prostate pain
    Swollen testicles
    Other symptoms worsen before start of menstruation
    Worsening of PMS


    Abnormal or other changes in sweating
    Activity level reduced to less than 50% of pre-onset level
    Burning sensation (internal and/or external)
    Changed voice
    Changes in sweat odor/body odor
    Delayed reaction to over activity/exertion (onset 24-48 hours after exertion)
    Electromagnetic (EM) sensitivity (electrical storms, full moon, affect function of electrical devices)
    Fatigue, prolonged, disabling, made worse by exertion or stress
    Fibrocystic breasts
    "Galloping" cholesterol and triglycerides
    Hair loss (not related to age, hormones, diet, medication)
    Hands hurt excessively when put in cold water
    Handwriting changes, altering signature and/or other writing
    Painful, weak grasp that gives way/lets go
    Periods of concentrated thinking causes physical and mental exhaustion, increases pain
    Sore throat
    Swelling/Idiopathic edema (fluid retention syndrome)
    Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel
    Symptoms change focus from time to time, like infection is moving through the body
    Thickened mucus secretions (nose, bowel, vaginal)
    Thickened "sleep" around eyes in mornings
    Very attractive to biting flies and mosquitoes
    Weight changes (usually gain)


    Cytomegalovirus (CMV)
    Epstein-Barr virus (EBV)
    Iron deficiency
    Mercury or other metal toxicity
    Systemic mold and/or mold sensitivities

    LIST #2:


    ____ Fatigue, made worse by physical exertion or stress
    ____ Activity level decreased to less than 50% of pre-illness activity level
    ____ Recurrent flu-like illness
    ____ Sore throat
    ____ Hoarseness
    ____ Tender or swollen lymph nodes (glands), especially in neck and underarms
    ____ Shortness of breath (air hunger) with little or no exertion
    ____ Frequent sighing
    ____ Tremor or trembling
    ____ Severe nasal allergies (new allergies or worsening of previous allergies)
    ____ Cough
    ____ Night sweats
    ____ Low-grade fevers
    ____ Feeling cold often
    ____ Feeling hot often
    ____ Cold extremities (hands and feet)
    ____ Low body temperature (below 97.6)
    ____ Low blood pressure (below 110/70)
    ____ Heart palpitations
    ____ Dryness of eyes and/or mouth
    ____ Increased thirst
    ____ Symptoms worsened by temperature changes
    ____ Symptoms worsened by air travel
    ____ Symptoms worsened by stress

    ____ Headache
    ____ Tender points or trigger points
    ____ Muscle pain
    ____ Muscle twitching
    ____ Muscle weakness
    ____ Paralysis or severe weakness of an arm or leg
    ____ Joint pain
    ____ TMJ syndrome
    ____ Chest pain

    ____ Lightheadedness; feeling "spaced out"
    ____ Inability to think clearly ("brain fog")
    ____ Seizures
    ____ Seizure-like episodes
    ____ Syncope (fainting) or blackouts
    ____ Sensation that you might faint
    ____ Vertigo or dizziness
    ____ Numbness or tingling sensations
    ____ Tinnitus (ringing in one or both ears)
    ____ Photophobia (sensitivity to light)
    ____ Noise intolerance

    ____ Feeling spatially disoriented
    ____ Dysequilibrium (balance difficulty)
    ____ Staggering gait (clumsy walking; bumping into things)
    ____ Dropping things frequently
    ____ Difficulty judging distances (e.g. when driving; placing objects on surfaces)
    ____ "Not quite seeing" what you are looking at

    ____ Hypersomnia (excessive sleeping)
    ____ Sleep disturbance: unrefreshing or non-restorative sleep
    ____ Sleep disturbance: difficulty falling asleep
    ____ Sleep disturbance: difficulty staying asleep (frequent awakenings)
    ____ Sleep disturbance: vivid or disturbing dreams or nightmares
    ____ Altered sleep/wake schedule (alertness/energy best late at night)

    ____ Depressed mood
    ____ Suicidal thoughts
    ____ Suicide attempts
    ____ Feeling worthless
    ____ Frequent crying
    ____ Feeling helpless and/or hopeless
    ____ Inability to enjoy previously enjoyed activities
    ____ Increased appetite
    ____ Decreased appetite
    ____ Anxiety or fear when there is no obvious cause
    ____ Panic attacks
    ____ Irritability; overreaction
    ____ Rage attacks: anger outbursts with little or no cause
    ____ Abrupt, unpredictable mood swings
    ____ Phobias (irrational fears)
    ____ Personality changes

    ____ Eye pain
    ____ Changes in visual acuity (frequent changes in ability to see well)
    ____ Difficulty with accommodation (switching focus from one thing to another)
    ____ Blind spots in vision

    ____ Sensitivities to medications (unable to tolerate "normal" dosage)
    ____ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays)
    ____ Sensitivities to foods
    ____ Alcohol intolerance
    ____ Alteration of taste, smell, and/or hearing

    ____ Frequent urination
    ____ Painful urination or bladder pain
    ____ Prostate pain
    ____ Impotence
    ____ Endometriosis
    ____ Worsening of premenstrual syndrome (PMS)
    ____ Decreased libido (sex drive)

    ____ Stomach ache; abdominal cramps
    ____ Nausea
    ____ Vomiting
    ____ Esophageal reflux (heartburn)
    ____ Frequent diarrhea
    ____ Frequent constipation
    ____ Bloating; intestinal gas
    ____ Decreased appetite
    ____ Increased appetite
    ____ Food cravings
    ____ Weight gain (____ lbs)
    ____ Weight loss (____ lbs)

    ____ Rashes or sores
    ____ Eczema or psoriasis

    ____ Hair loss
    ____ Mitral valve prolapse
    ____ Cancer
    ____ Dental problems
    ____ Periodontal (gum) disease
    ____ Aphthous ulcers (canker sores)

    ____ Difficulty with simple calculations (e.g., balancing checkbook)
    ____ Word-finding difficulty
    ____ Using the wrong word
    ____ Difficulty expressing ideas in words
    ____ Difficulty moving your mouth to speak
    ____ Slowed speech
    ____ Stuttering; stammering
    ____ Impaired ability to concentrate
    ____ Easily distracted during a task
    ____ Difficulty paying attention
    ____ Difficulty following a conversation when background noise is present
    ____ Losing your train of thought in the middle of a sentence
    ____ Difficulty putting tasks or things in proper sequence
    ____ Losing track in the middle of a task (remembering what to do next)
    ____ Difficulty with short-term memory
    ____ Difficulty with long-term memory
    ____ Forgetting how to do routine things
    ____ Difficulty understanding what you read
    ____ Switching left and right
    ____ Transposition (reversal) of numbers, words and/or letters when you speak
    ____ Transposition (reversal) of numbers, words and/or letters when you write
    ____ Difficulty remembering names of objects
    ____ Difficulty remembering names of people
    ____ Difficulty recognizing faces
    ____ Difficulty following simple written instructions
    ____ Difficulty following complicated written instructions
    ____ Difficulty following simple oral (spoken) instructions
    ____ Difficulty following complicated oral (spoken) instructions
    ____ Poor judgment
    ____ Difficulty making decisions
    ____ Difficulty integrating information (putting ideas together to form a complete picture or concept)
    ____ Difficulty following directions while driving
    ____ Becoming lost in familiar locations when driving
    ____ Feeling too disoriented to drive

  6. ephemera

    ephemera New Member

    many thanks for circulating this.
    best thoughts
  7. JLH

    JLH New Member

    You are welcome. I hope the info was informative and useful.

  8. cafe52

    cafe52 New Member

    Hello my name is Teri I have been turned down twice now for didability.

    The question I have is can I get it even though my docs don't think I need it and won't support me I have just about everything everyone else has at this site but I docs still think I can't get disability on fibro alone and won't help me.

    I think they just don't want to do the paper work.

    Please let me know, I don't know what they have put down in chart.
    [This Message was Edited on 09/20/2005]
  9. luv2float

    luv2float New Member


    You've given me a lot to think about and do. I will definately do what you have suggested.

    God Bless You, Chris
  10. JLH

    JLH New Member


    It's really hard to get SSDI if your doc is not supporting you. Because Soc. Sec. sends them paperwork to complete, and if they have a negative attitude, it will be reflected on how they respond, if they even respond to it!

    Maybe what you need to do is what I suggested to "luv2float" above. Make some detailed list of every single symptom that you have and a description of how it makes you feel. Use the 0-10 pain scales in it to indicate how much pain you are feeling.

    I looked at your bio to see how old you were, but it's not filled out. So, I will tell you that I know it IS harder for anyone under 50 to get SSDI. You really have to have a good case to get it when you are younger. Many here have, so it is not an impossibility. But it is even tougher if you're under 50 and have a college education!! They think you are young enough and educated enough that you can do "something"!

    Maybe if you can "prove your case" on paper, take it to your doctor, and beg and plead for him to help you with your application by completing the paperwork, he could use your paperwork to aid him in completing the form and it won't be so "difficult" on him to think for himself!!

    Remember, list anything else outside the fibro complaints that is a medical problem--like frequent headaches, etc.

    Take care and good luck,
  11. darude

    darude New Member

    I am at the first appeal stage. My doctor had to write a narrative. This appeal has taken six months so far. She wrote the narrative a month ago and I have yet to hear anything. I have phoned them three times but have had no reply. I will use this info and send it in thankyou.
  12. dancingstar

    dancingstar New Member

    I lost my private disabiity with Un-um Provident when I mentioned the word fibromyalgia as I originally had a back injury. Though I will never likely receive any sort of disability payment from anyone because I "look" too healthy -- and I thank God every moment of my life that this is true -- you helped me to identify the weakest portions of my body. In my particular case, it seems that there has been some harm to my autonomic nervous system, something that I never knew until now. Thank you so very much for your amazingly educational post!!


    Hi. I would definitely go to a different doctor. A neurologist or a rheumatologist. One of these doctors will be more familiar with your illness and the debilitating symptoms than most general or family doctors. There are alot of doctors who do not know much about FM and there are too many who don't even 'believe' in it. Try to get a referral from someone in your area for a good doctor to see. It's so important to have the right doctor. Most insurance companies and soc. sec. send requests for updates every so often, so you need a doctor who is prepared for these. Definitely ask the doctor if he wants you to fill out any of the form so that it won't take up too much of his/her time. If you don't get a good referral from anyone, call a lawyer. They will not only be helpful in the approval for your claim, they may be able to refer you to a better doctor. Make sure it's a lawyer who only takes a one-time fee rather than continuing payments from your disability.

    Hope this helps - Good luck.

  14. FM-in-IL

    FM-in-IL New Member

    I just want to tell you how wonderful I feel your tips, documents, and symptoms lists are. Thank you for sharing them. I hope everyone either thinking about applying or ones who are in the process of applying for Soc. Sec. Disability will read all of these and put some of this information to use in their own case.
    I fought my case for about 2 years and finally won it after I had to appear before the judge. I did hire a local attorney who specializes in disability and workman comp cases however, I feel that it was my hard work of filling out all of the forms and my family practice doctor who really won it for me. When we went before the judge he(the judge)had so many copies of my forms and doctor reports that it would have taken him at least the better part of an eight hour day for him to read through all of it. I spent weeks writing what seemed like a book when I filled out my original request for disability form. I listed all of my multiple health conditions and long descriptions of all of the symptoms these conditions have caused me. I listed every little possible symptom including now having brittle fingernails. I figured the more they knew the first time around the better. I recommend this to everyone. If you can't seem to focus or type and/or write for long periods of time then do a little everyday like I did, or ask a spouse, other close family member, or a friend to write or type for you as you dictate everything to them.
    I was lucky because I had a great doctor who was the one that suggested that I apply for disability. He was great and since I was seeing him every 3 to 4 weeks he knew me and my symptoms pretty well. He also sent me to various specialists and I went through what seemed like every imaginable test that there are. I was lucky to still be covered by my employer's health insurance and I even continued it under cobra for almost a year after I was left go from them because I could not return to work by the day they demanded. I had already taken my 3 month FMLA leave and then I got really sick again exactly 11 months later. I was 1 month short of being able to qualify for another FMLA leave so they fired me. Anyway, by having all of these tests done it proved to the judge that both I and my doctor were trying to make me well, and we ruled out everything that we could think of that was keeping me so fatigued and sick all the time.

    I also had a job relations specialist in my hearing before the judge. On one of the last forms and/or reports that they asked my doctor for, my doctor told them that I needed to have a job where I could go and lie down for either a few minutes or perhaps up to an hour or so at my own free will as I felt necessary. The judge asked me if this were true and I explained to him that yes, I get so tired and sleepy that I take at least several substantial naps durring my normal days. When the judge asked the job relations specialist about whether or not he felt that there would be any sort of job or an employer who would be able to accomodate me with a place to lie down when I needed to throughout my normal work day he responded by saying he wouldn't know of any employer who would be willing or able to allow me this special accomodations. I feel that this is what really got me the disability along with my doctor's and my thorough paper trail. I also kept a daily diary of how I felt and what I was able to accomplish, or was not able to accomplish in most cases, each day for almost a year. I didn't have to give this to the judge but I had it with me at the hearing just in case I couldn't remember much and I needed some specific examples of what my days were like since becoming sick.

    Now JLH, I have a question for you or any others out there who may read this. I got my first regular monthly Soc. Sec. Disability check in January 2004 but the judge did allow me the backpay which went back to the last day that I had worked which was in Feb. 2002. Do you know how long it will be before they review my case again? Will I have another enormous amount of paperwork and forms to fill out again? Will they make me go see their appointed doctor again? In other words how hard will it be for me to continue to keep receiving the disability payments? I now have a different doctor who took over for the original one when he left our town. My new doctor has been seeing me now for almost 2 years and I don't think he will have a problem of agreeing that I still can't work a full time job without still needing these special accomodations, but one never knows until he actually has to fill out a report for the Soc. Sec. people. I feel that I have definately not had any improvements in my health and in fact if anything I feel I have gotten worse. Since I am 47 years old I am sure the government would like to see me go back into the workforce for another 20 years. My husband and I have talked about how perhaps I should try to get a part-time job, but each time we discuss it, we both agree that I wouldn't be able to even handle anything part-time. I sure hope I won't be forced to try working again unless I suddenly have a miracle recovery, which I certainly don't see happening for the rest of my life. I pretty much know and have accepted my limitations of my daily life. I don't think I could even stand the stress of having to try to find a job let alone keeping one if I were luck enough to find an employer who would be willing to give me a chance. Any info. on keeping the disability coming in would be greatly appreciated as I know my husband and I struggle now to keep everything afloat with just his meager income and my disability check. We would never make it on his income alone especially since most of his goes to our health insurance coverage. Thanks. Brenda in IL.

  15. helpme_doc

    helpme_doc New Member

    Thank you for posting this info. I am attempting to appeal my Disability case by myself and this info. should help me. thank you so much.
  16. luv2float

    luv2float New Member

    Bumping for others...good info!!
  17. JLH

    JLH New Member


    The Soc. Sec. Adm. reviews everyone's disability at a different time. I think it might be according to what you were disabled for, but I am not sure.

    When I received my award, I think they mentioned in that letter that my case would be reviewed again in 4 years.

    I have already gone through that review and it was not bad. They sent me about a 4 page document of questions for me to complete. It contained questions like: Do you think you have improved? Do you think you could work a part- or full-time job now? Name the last 3 times that you went to the doctor and why. If you have been hospitalized in the last 4 years, indicate when, where, and why.

    They were questions like that. I happened to have been hospitalized 3 times since my initial award. All of them were for my heart, and one hospitalized was for surgery to install a pacemaker. I think that pretty well guaranteed me keeping my SSDI until the next review!!! LOL

    I don't think they would send you to their appointed docs again, unless maybe your docs thought you were no longer disabled or something. (I am NOT an expert--this is strictly my opinion!)

    How hard will it be for you to continue to keep receiving the disability payments? Probably not hard, UNLESS your doctors do feel that you have drastically improved!

    What I do is: Make me a spreadsheet of all my doctor visits, date, which doc, and Dx. If he changed any meds, I indicate that to. If I receive any NEW diagnoses, I write them down. If I have any outpatient surgerical procedures or tests done, write them down. IN OTHER WORDS ... make a note of everything that may be beneficial to prove that you are still ill. If you are hospitalized, make a note of it.

    I did this, then when I had my review, I typed up a page of "Additional Information" to add to my reviewal form.

    After I mailed in my review form to Soc. Sec., I received a reply from them a few weeks later stating that they agreed, based on my review form, that I was still disabled and they "found no need at this time to consult with my doctors, and that they would advise ment when I would be reviewed again.


    Another note: when I compile all of the info that I menioned in an earlier reply and take to the doc, I sometimes print that info out on a colored paper. What I happened to pick up was green.

    that way, when the doc is looking for what I provided to him, it's the only green paper in his file folder. That might also be good for a Judge -- he wouldn't have to look over a ton of white papers that he would have in front of him!


    I'm glad so many of you have found this info helpful!!!!!

    Good luck!
  18. Shananegans

    Shananegans New Member

    I'll take any tips, help I can get for my SSDI case. I'm 25 and it's becoming a major issue in my case. I am so sick I don't even have a social life anymore and nobody seems to care about that. And the worst part is my doctor isn't supporting me at all and I didn't find that out until I was denied the second time. Needless to say, I am on the hunt for a new doctor.

    The other problem I have run into is, the law firm representing me has a Paralegal on my case instead of an actual lawyer. Recently I have heard this can actually work against me. Any advice for that one? I don't know what to do at this point. I started out with a lawyer but then my lawyer moved to a different state and now I'm stuck with this paralegal. Can I complain and get a lawyer again?

    Thank you,
  19. JLH

    JLH New Member

    I did not get an attorney when I filed my claim; therefore, I don't have any experience with them. And .. I have no experience with paralegals either.

    Maybe someone else will come along and help you out, I hope!

    Take care,

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