Discussion in 'Fibromyalgia Main Forum' started by Sharon, Apr 17, 2008.

  1. Sharon

    Sharon New Member

    Please post all information regarding social security and social security disability on this thread.


  2. msbsgblue

    msbsgblue Member

    Sharon if this is not an acceptable post please take it off, but there is a Social Security Disability Coalition online that has all the info anyone could ever need. I don't know if you all saw Linda Fullerton on the news recently but she founded this. Even Social Security visits her information periodically.

    It is strictly the business of filing for and getting disabilty there is nothing else but good info there.
    [This Message was Edited on 04/17/2008]
  3. mezombie

    mezombie Member

    Social Security has come out with an official ruling because CFS is not under the Medical Listings for SSDI. It outlines what people with CFS need to show to qualify for benefits.

    To get to this document, copy and paste this into your web browser:

    The Social Security Administration and its employees at all levels are supposed to consider disability claims involving CFS according to this ruling.

    But you never know!

    Therefore, it is definitely worthwhile to include this in your application for disability benefits and any subsequent correspondence you may have with the SSA.

    P.S. Please note that one of the footnotes also mentions Fibromyalgia.

    [This Message was Edited on 01/20/2009]
  4. mezombie

    mezombie Member

    Here's another site worth checking out:

  5. mezombie

    mezombie Member

    This free booklet can be printed from your computer. It is specific to CFS and FM and is loaded with terrific information.

    Copy and paste this URL into your web browser:

    Or click <a href="http://www.masscfids.org/publications/disability_handbook/MassCFIDS-FM_Disability_Handbook_12-40.pdf"><b>HERE</b></a>.

    Both methods will lead you directly to the PDF (printable) version of the booklet.

    [This Message was Edited on 09/03/2008]
  6. mezombie

    mezombie Member

    This site arose out of discussions among CFSers and others who were having an extremely difficult time getting benefits. It has information on LTD as well as SSD.

    There's a FAQ (Frequently Asked Questions), information on filing, and other useful links.

    There is also a link to the ya hoo Disinissues discussion group, where you can post questions and get answers. Disinissues is an extremely valuable resource. Many people who have gone through the process are available to answer your questions. There are also files full of useful resources and answers to frequently asked questions.

    I can't give out the Disinissues site address here, but the website address with the link to it (it's the second link; the underlined word Disinissues) is: http://www.cfids-me.org/disinissues/index.html#info

    You can also click below to get to the site with the link.

    <a href="http://www.cfids-me.org/disinissues/index.html#info"><b>Disability Benefits Information Website</b></a>

    Remember to click on the underlined Disinissues if you want to ask your questiom there.

    [This Message was Edited on 09/03/2008]
  7. landra

    landra New Member

    It is a yahoogroup, like this. They focus on CFS/FM, have some files you can look at and links. But the best part is you can ask questions and someone - or more - will answer you. It is called disinissues, for disability insurance issues. Someone on this group referred me to it and I love it. I feel like the "fog cleared" and someone has a map!
  8. marti_zavala

    marti_zavala Member

    I received SSDI two months after I applied. (Shocking, I know!) I waited four years after I stopped working before I finally applied. That is not advisable!

    Here is my advice, based on my experience.

    - Before you apply for disability benefits, look at your Social Security Statement, showing your earnings history and benefits estimate, that is sent to you every year. You can get a copy at your local SocSec office if you don't know where you put yours. This is the document that shows your wages over your lifetime. Check it carefully, and get corrections made if needed. Once you apply, they will not/cannot give you this statement. I found out that my file was frozen while I had an open claim. Once it was approved, I was able to get my statement. Make sure all your work income is on there, as that determines your benefit amount.

    - Apply as soon as you can and don't let the application expire. Retroactive benefits are paid for only one year back from the date of your application. It is very common to be denied twice then the third time, you appear before a judge at a disability hearing. This is where most people are approved. Don't give up!

    - Build up a medical file. I used the local county's indigent care program to get free medical care since I did not qualify for Medicaid. If you need financial help to see doctors, find out if your area has this type of program. You could contact a public hospital and ask them
    if they are aware of any programs like the one I was on, offered by your city, county, or state. I had to submit financial information and a denial from Medicaid, so that was my first step and quite easy. You must see doctors to build a documented case for your claim.

    - Give detailed examples of your limitations. One of the questionnaires is about your limitations - spend time on this, be specific about how your life has changed, how easy/difficult it is to care for yourself, your family, your house, working, sleeping, eating, showering. Mention
    how it affects your friendships, relations, hobbies, quality of life. I was very specific - I used several pages to detail little things even how I have to lie down after I take a shower, to rest before getting dressed.

    - I registered with the Dept of Assistive & Rehabilitative Services. I insisted that I wanted to work (which I did - and still do!) I was accepted as a client, then I was sent for various evaluations to determine my limitations and abilities. Their doctors determined that I was not a
    good candidate for work - the money they would spend to help me work from home or have a special accommodations at a job would be wasted, as I would get too sick too soon. I was scheduled for a test of my physical ability. As it turned out, my SSDI claim was approved the week before I
    was supposed to go in for the testing, but I made sure that they knew my mom was coming in from out of town to care for me and my son after I crashed, since I knew I would. I requested that the testing be done over several days, but they refused. I made a big deal about that. I can't be sure, but perhaps the fact that I was willing to do the test but concerned about the post-exertion fatigue would have helped support my case if it hadn't already been approved.

    Here is the website for my state, maybe you could cut and paste then change the tx to the abbreviation for your state and then hit go or enter.

    - If you get referred to a psychologist, ask to be sent to a neuro-psychologist. The one I was sent to did the usual mental interview plus the IQ tests. She also did the hand grip test. I think this was a big key in approval of my disability claim. It proved weakness in my upper arms.

    - I stressed that I would have post-exertional fatigue, and I requested an appointment the next day so they could document the change. I made a big deal about that - how the test was not fair because they were not tracking me the next day. They refused the request for the next-day retesting, but I think my concerns were noted.

    - I attached the document, SSR 99-2p: POLICY INTERPRETATION RULING TITLES II AND XVI: EVALUATING CASES INVOLVING CHRONIC FATIGUE SYNDROME to my package. (The link is on the Disinissues website or here)

    - I attached a form from my state Dept of Health & Human Services on which my doctor rated me with temporary disability. My doctor was not very helpful and would not help me in any way with my medical file or write any reports, but this was a simple form that he just signed - he didn't have to write up a report. I don't know if that helped but I imagine that it did, despite its being rather lukewarm about my being unable to work.

    - I had help filling out the questionnaire and I noted that. Also, I made a big deal of needing ample time to fill out any paperwork and asked my SocSec rep to send me any required forms early as it would take me forever to fill things out due to brain fog.

    - I received help from the Yahoo group called disinissues. They are a wonderful group and they helped me navigate and gave me confidence. I did not use a lawyer or service. Actually, I applied to get a file open, then I was going to use Allsup or find an attorney but I was approved within 60 days so I didn't have to find help which was good as I didn't have to pay anyone.

    - I don't consider my medical file having anything obvious in it - typical invisible Chronic Fatigue/Fibromyalgia. Not much testing was done - some positive viral tests and mycoplasma pneum. but that's it.

    Don't give up,
    Marti Z.

    [This Message was Edited on 04/18/2008]
    Added link to Dept of Assistive and Rehabilitative Services[This Message was Edited on 04/20/2008]

    Teabisqit posted information on a different thread and I rec'd permission from her to discuss it here. For the whole text and thread, search teabisquit on 4/27/2008.

    She and a friend have experienced Doctors "losing" their medical records. She may now be in danger of losing her disability due to an incomplete medical record.

    SUGGESTION: Make photocopies of all of your medical records especially your labwork or MRI's, etc.

    I had made a list of all my Doctors, addresses, phone numbers, fax number, and the diagnosis they gave me and the year of that diagnosis. I also listed diagnosis confirmations and the year BUT I DID NOT keep photocopies of any records. I will now correct that so that I am prepared for my first review. Thanks, teabisqit!

    [This Message was Edited on 04/28/2008]

    Edited to add this information 6/27/08:

    Just to be clear, I applied in 2005 but couldn't even fill out the questionnaire as I was too sick physically and my cognitive skills were gone. That application expired. I applied again in 2006, but since I already had the questionnaire, I had it mostly filled out by the time I applied again.

    I applied with the intention of getting an attorney or Allsup (had already been in contact with Allsup). I was actually preparing everything they had asked for which took me about a year, then I reapplied in 2006. I figured I had plenty of time to get better medical records and Allsup or an attorney, when I was approved, much to my shock and delight. I was approved on two diagnoses.

    Then, it took me two years to get my head on straight to try to figure out what I did.

    So, what appears to be an effortless case, took 1 year beforehand to stumble through and two years after to document (because I now have Medicare, I have started some treatments so I am better cogntively).

    Personally, it seems that you have to do the same amount of work whether you go with an attorney or not. You have to create a list of doctors (how does your attorney know who you have seen?), you have to fill out the questionnaire (how the does attorney know what you cannot do anymore?). My opinion is to prepare your questionnaire and doctors list and apply and hope to get approved "on the record" then you don't have to wait for a hearing. Then, if you are denied, get Allsup or an attorney. (again, my opinion, as I do not know how much of the work is done by the attorney)

    I hope that the information I provided (which took two years to put down on paper) can help someone shave off some of that time and struggle.

    [This Message was Edited on 06/27/2008]
  9. marti_zavala

    marti_zavala Member

    Hi bdtmu

    The office was called Department of Assistive and Rehabilitative Services - DARS (looked it up to get the spelling right). I will change my original post above.

    Their purpose is to get people working again who may need help due to health issues or restrictions such as disabled people or someone injured and needing a special chair in order to work.

    Here is the website for my state, maybe you could cut and paste then change the tx to the abbreviation for your state and then hit go or enter.


  10. marti_zavala

    marti_zavala Member

    Copied this from post from caledonia to request from fieldmouse on another thread Bell's CFS Disability Scale 04/20/08 03:36 PM. I thought it was a great post, so I hope it was okay that I posted on this thread.


    Bell's CFS Disability Scale

    This scale is from The Doctor's Guide to Chronic Fatigue Syndrome, by David S. Bell, MD, pages 122-123. Addison-Wesley Publishing Company, Reading, MA. Copyright © 1994, 1995

    The attempt is to document as accurately as possible the severity of symptoms, the degree of activity impairment with both activity and rest, and the functional ability regarding full-time work.

    100 No symptoms at rest. No symptoms with exercise; normal overall activity level; able to work full-time without difficulty.

    90 No symptoms at rest; mild symptoms with activity; normal overall activity level; able to work full-time without difficulty.

    80 Mild symptoms at rest, symptoms worsened by exertion; minimal activity restriction noted for activities requiring exertion only; able to work full-time with difficulty in jobs requiring exertion.

    70 Mild symptoms at rest; some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work full-time with difficulty.

    60 Mild to moderate symptoms at rest; daily activity limitation clearly noted. Overall functioning 70%-90%. Unable to work full-time in jobs requiring physical labor, but able to work full-time in light activities if hours flexible.

    50 Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4-5 hours a day, but requires rest periods.

    40 Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 50%-70% of expected. Not confined to house. Unable to perform strenuous duties; able to perform light duty or deskwork 3-4 hours a day, but requires rest periods.

    30 Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day but requires rest periods.

    20 Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 30%-50% of expected. Unable to leave house except rarely; confined to bed most of day; unable to concentrate for more than 1 hour a day.

    10 Severe symptoms at rest; bedridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.

    0 Severe symptoms on a continuous basis; bedridden constantly; unable to care for self.
  11. bettyg

    bettyg New Member

    you are eligible to start filing the SSDI process 5 months after your last day worked.

    you must have 20 quarters worked continuously in last 5 years. the longer you procrastinate, it shortens the time you have to file.

    good luck!
    [This Message was Edited on 04/23/2008]
  12. luvdogs

    luvdogs New Member

    Please, do not stop this thread.
  13. Bambi

    Bambi New Member

    Disability rules etc, though I do getthe information told here. My question is do housewives ever get awarded benefits? I have a very limited amount of paid into Social Security because most of my life I was a housewife with just periodic work outside the home, mostly like Christmas times or when we needed extra money for something major over the years.XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXNow however, at 61, my husband who has always worked construction, is out of work due to the slow down in new home building. ANY amount of income would help us now. He would qualify for Disability but no way could we afford for him to be not looking for work as we have house payments and all the other expenses most people have. He can't work but HAS to..and as a foreman, as he has been for the last many years, the work was something he could manage to get through.XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXI've also heard that you can't accept help from family and friends during the waiting period to get Disability, so never can understand how people live; housing, food, utilities, gas and all the other things that are just necessities while you wait. And from what I've seen on this board it can end up YEARS of waiting. HOW do people manage? Bambi
  14. marti_zavala

    marti_zavala Member

    I don't remember seeing anything about not getting any help from family and friends for SSDI. When you are homeless what do you do?

    You get disability, SSDI, if you are disabled and have worked the sufficient number of credits in the system. Your spouse could earn a zillion dollars and it doesn't affect it.

    Now SSI is different, that is temporary money to hold you over until you get disabiltiy (SSDI). They do look at your assets, etc. AND you do have to pay that back once you get SSDI or you get refused. They deducted what I got for SSI from my SSDI backpay.

    As a housewife, you may not have paid into the system sufficient quarters. It is not fair as that it a noble profession. My sister was in the same boat. I had to work as a single mom so I had enough quarters in.

    Go down to the social security office and ask. That can't hurt. If you want to get SSI to tide you over, you have to meet the income guidelines but no such guidelines exist for SSDI. You have to meet the quarters guidelines and the medical guidelines.


  15. BlueSky555

    BlueSky555 New Member

    Does anyone know what would be an important part of the medical records?

    I obtained copies of a couple of my Drs. records just to look through for my benefit. The only documents I see are 1. the written documentation for each visit, what meds. I'm on, and the plan. 2. Some reports from other Drs. when I had tests run, and of course lab reports.

    What do you think would be the most important part for the Judge and SSA?

    Would they look at your vital signs for each visit; would they look for notes from the Drs., which were NOT in my files, except reports from other Drs. about tests, etc.

    I guess I'm wondering when the judge looks at the medical records, what are they looking for?

    Thank you in advance,


    Also, my medical records are 2 files thick at one of my Drs. and rather thick at another. That will take some time to go through them.[This Message was Edited on 04/26/2008]
  16. mezombie

    mezombie Member

    It would be best if you could get your doctor to draft a letter to SSA explaining why you aren't able to work.

    Please check out the links in this thread. I'm sure at least one of them has a sample letter.

    Good luck!
  17. froggyfog

    froggyfog New Member

    I have been denied for SSD at the appeals level. I'm am using ALLSUP which is a company representing people filling for disablilty.

    Does anyone know what my chances are......now I have to appear before a judge. I know I can't work due to fatigue, migraines, pain but for some reason I can't seem to get that across to SSD.

  18. beckks

    beckks New Member

    I rec'd my approval letter yesterday. The judge's ruling was:
    the claimant has the following severe impairments:
    generalized anxiety disorder
    degenerative disc disease
    chronic fatigue syndrome
    Hope this helps
    It took me 15 months and i didn't have a lawyer.
    Good luck
  19. marti_zavala

    marti_zavala Member

    froggy frog,
    You are now at the third level and this is where most people get approved. Try to make sure your file is as complete as you can make it. YOu can still add info to your file.

    Please check out my post and try to see what you can add to reduce chance of denial.

    Hang in there.
  20. joysarah

    joysarah New Member

    I have finally gotten my disability. I got it less than a yr ago. I recieved back pay from the first time I applied. I got 3 yrs worth of back pay.
    sincerely Joy