How to apply for disability

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Hello I am wondering if anyone has advice for applying for disability for cfs. I am in the u.s. but all advice would be appreciated. I have tried to look up information about applying and people's personal stories but there doesn't seem to be tht many online.

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  • Posted

    Some questions that I have in particular are do I apply for SSDI or SSI. It also asked do I have an illness that is expected to end in death (yes or no)?
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  • Posted

    This is a very good question as I've been trying to apply for disability for 3 1/2 years and I've been turned down 3 times. I have a good lawyer, and we have applied for both ssdi and ssi (whichever one I can get). So far neither. The first time you apply you'll most likely get turned down. I filled out tons of paperwork and it was like their reasons for turning me down were so ridiculous it was obvious they never even read any of the paperwork I supplied. The second time, pretty much the same. The 3rd time we requested a court hearing and I REALLY prepared for this. When I got there, I answered the questions and then had to wait 3 months before getting an answer. They took whatever little minor discrepancies they could find to turn me down again. Bottom line is that if you don't have some kind of tests that reveal a serious medical issue, it's going to be difficult to get disability so,... I would advise, if you can, find a good doctor who specializes in CFS and see if he/she can supply medical documents proving it. I'm not sure that exists but people who have CFS with POTS have a better chance of getting disability because POTS can be medically proven. Let us know how it goes for you.

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    • Posted

      Wow sorry to hear that this happened to you. It makes me mad thinking about your case and I feel very stressed about going through it myself. It's outrageous that cfs is not listed in the disabilities book and that they deny so many people's claims. What minor discrepancies did they turn you down for? I have seen two cfs specialists and have some tests to back up my illness. I have POTS that was shown through the tilt table test. I also had high antibodies to ebv and hhv6. In addition I had a test that shows that I have too T cells which results in too many cytokines and inflammation. All typical of CFS. I also had a test that showed my immunity to different types of pneumonia and I had bad immunity to lots of them which I believe shows bad immune function. What minor discrepancies did they claim to have to turn you down? I also have bad anxiety and panic attacks and am seeing a psychologist. Do you think that including your mental health issues raises or lowers your chances of being approved?     

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  • Posted

    SSDI . If you have worked before. Ssi if you havent. Start a log on your daily struggles. They want to know that you are serious about this. I used an app called "catch my pain" even tho it wasnt pain for me, just misery and fatigue . I do have Pots and got a diagnosis in past 2 years which also helped. If i were taking midodrine for it when i got examined by a disability doctor , i may have gotten approved right away. Maybe! Would have saved me 2 years battling for a court date and hiring a rep. I wonder that only becuz i got a call the next day from a social worker asking if i tried midodrine. But i hadnt only cuz i knew it wouldn't help and its kinda scary stuff. But now i need it i think to prevent heart pain episodes. So , also they like a mental disorder to go first or to go along with the illness. Mine was anxiety and depression. I seeked counseling to confirm this instead of meds that wouldnt help. And im drug sensitive. Diagnisis was not a huge issue but did it to save my life by getting disability. I'm a single mom with no helping family. So i NEED disability. And yes, get a disability rep or lawyer. Mine was a retired doctor with a minor degree in public health something. He helped me so much! I would've been lost without him. Worth the $6,000 fees only if you win.

    Save everything!! Bills, receipts, pictures of all your pills, supplements, devices like shower seats, canes etc! Good luck!

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    • Posted

      I am 21 and worked on and off for two years before so I'm not sure if I worked enough to qualify for SSDI. Do you know how much time you have to work to qualify for SSDI? I am also sensitive to medication. Has counseling helped you deal with your anxiety and depression? I have bad anxiety and panic attacks and have seen a counselor and take medication a medication to deal with my POTS and anxiety. However I still have anxiety and might need to take something else. Honestly reading your posts makes me mad that they do this to people and causes me to feel bad because of over activity of my sympathetic nervous system. Glad you got approved. Do you think that including mental health problems hurts or helps your case? 

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    • Posted

      The tests showed high ebv and a diagnosis of CFS from my medicaid doctors. (I kept being bounced around from one to another so that was another strike against me because they want a consistant doctor). The discrepancies were numerous. A couple I remember was that I claimed I had low blood pressure which was consistantly low except one time it was 110 over 80. But at that time I was drinking copious amounts of salt water to keep it up which isn't healthy so I can't keep doing that all the time. So they took that as evidence that I was not being truthful. Also they asked me if I could drive and I said I can drive up to about 20 minutes. They took that statement and said that I'm capable of traveling alone. (!!!)  I could have had more medical proof if they accepted tests or statements from holistic practitioners but they don't consider that valid. I don't believe I have POTS but I do keep track of my heart rate because it goes pretty high pretty quickly at times and I attempt to keep it within a certain range to avoid crashing.

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    • Posted

      Wow that's ridiculous. Did you have a specific doctor to back you up and help your case? Maybe that would help.

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    • Posted

      or any of your doctors to back you up and support your case?
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    • Posted

      No, typically medicaid doctors don't want to get involved. The first doctor I saw said "You definitely have CFS." I asked him about getting disability and he said "Good luck with THAT!"  My current doctor didn't want to even bother filling out the required forms. I think you have a better chance in terms of having "proof" and suffering from anxiety/depression raises your chances, but I'm not sure you've worked enough. I think I had some form of cfs all my life because I've never been able to work more than 20 hours a week and they had to be sitting/ office type jobs with a lot of flexibility. If you can get well enough to work part time, you can still manage to make a somewhat decent living.

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    • Posted

      You may only get SSI then ,which may not be a whole lot , 400 or 500 a month maybe , im not really sure how it works. Im older so that was in my favor. Just turned 55 in Dec and my court date was Jan 11 so i just made it. Something about age 55 now, is considered presenior citizen or something like that. God bless you for being so young! I was 27 when i became ill. But luckily i was a stay at home mom from age 33 till now , having worked parttime in the schools till my POTS became worse and the EBv. I worked full-time from age 21 till 33. Good luck! And YES! Everyone told me to put a mental disorder with it. That's sad also but ya gotta do whatever helps!! Oh and i also had all my labwork as evidence with the EBV, HHV6 and parvovirus.

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    • Posted

      Oh yeah . And my rep told me to see a rheumatologist also just for proof/diagnosis. So i did. Waited a year to see him! Got the appointment a week b4 my hearing which i thought would be too late.! But it worked out somehow. He told me it was prob lymes and to get tested which ive already done and that it could be sleep apnea and to get a sleep test done. He was probably 28 yrs old! Haha. But at least i saw him.
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    • Posted

      Glad to hear that it worked out for you. Has the midrodine helped you? I am in clonodine for pots but might also try midrodine because my heart rate still goes high. Trying to up my salt intake and am trying support socks first. I was fired from my job for inadequate performance and failed all of my classes (online too) in recent years so hopefully that will help my case.
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  • Posted

    Update: I can't apply for either SSDI or SSI. I can't apply for SSDI because I didn't earn enough money to file for taxes after working for two years. I also can't apply for SSI because I have over $2000 in my bank account. I tried to save my money and be frugal and my parents paid for most of my expenses. 

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  • Posted

    Going to start spending my own money on living essentials and I will be able to apply soon. 
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