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    Fibro and SSI
    Disneygranny01 posted:
    I was denied SSI. They based their denial on the fact that my SSI Disability "points" had ended in 2007 and my diagnosis was in 2008. I had been to the drs. trying to figure out what I had for at least 8 years. Just because I wasn't diagnosed doesn't mean I didn't have it. All the tests prior to 2008 were by my PCP who was just testing for symptoms as they came up. Acid Reflux, Arthritis, Dizziness, Trouble sleeping, Etc... I had a Colonoscopy, an Endoscopy, Internal Ultrasound, Hernia surgey, Knee surgery. So many blood tests, stress tests and nuclear imaging. Every test came back normal. I have had joint pain, dizziness, stomach and digestive problems, fatigue, etc... Finally in Jan 2008 my PCP relented and referred me to a Rhuematologist, A Sleep Specialist, a Psychologist, and physical therapy. I was diagnosed with Fibro, Sleep Apnea and Post-Taumatic Stress Disorder. After years of treating symptoms I now KNEW I had Fibro. Now I need a lawyer to get the benefits I deserve. I haven't been able to work since 2001. They also claim that I can do the work I am trained for. Data Entry. How can I do data entry when I can't drive to work dizzy and I can't always use my fingers without pain from the Fibro. and Arthritis. Has anyone else had these problems with Social Security?
    Dollbug responded:
    Hello Disneygranny and welcome.....MiMi in NC....our system is so broken.....and for the most it seems to be a game that they play with people's lives....sorry....but this is my opinion.....and a lot of people are denied at least once, perhaps twice or maybe even 3 times...but if I were you....then I would be sure and appeal each and every we FMers....must keep on keeping state that your SSD was based on "points"....perhaps you can apply for the SSI....(look it up on the internet)

    I went through this also...and it is quite nerve racking to do so...but we have no choice in the matter....Data Entry or any kind of computer work is not a good thing for us to be doing for 8 hours or more a day...this is why I am in the shape that I am in today....

    I hope your doctor is behind you trying to get the it is important that the doctor fill out the paperwork for you....

    You do not necessarily have to get an attorney....but you must do exactly what they say...I did not use an attorney...but I did get denied...and then appealed the decision....I then contacted my local representative and I am assuming that this is what helped me....although I do not know for sure...

    I eventually got approved....but it was not an easy thing to do...and then it took me another year or so to get the benefits that I was entitled to....I often wonder if the right hand knows what the left hand is doing....and now I am trying really hard to get the tax information fixed which the SS department messed up BIG time for me....

    It is always one thing or another....but I will also tell you that you must do whatever you feel you need to do....

    I hope that you will also check out the info under "Tips" and "Resources" the right of this might find some good "tools and tips" that you have not thought of trying to help you cope with the "wrath of the dragon", aka FM....

    I would also encourage you to be sure and ask your doctor to check your Vitamin D level....which can be so important for some of us low Vitamin D causes additional pain for a lot of us...

    Good luck with your SSD.....

    IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA.... My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
    annette030 responded:
    Get a lawyer who does SSDI cases all the time.The basis for your denial does not make sense to me.

    The credit system they use is kind of complicated, you have to have so many credits earned within such and such a length of time. But I think it is ten years, not one year.

    They always claim you can work at something. I am an RN, and they said I could work in a podiatrist's office, that that would somehow be different than an MD's office. The judge did not even read the SSA's report from their vocational expert, he went by my state dept. of disability and vocational rehabilitation because he said they actually SAW me and worked with me. They said I could no longer work.

    A friend of mine was followed by guys with video cameras who investigated for SSA. So don't get caught on tape driving if that is part of the reason you say you can't work. She knew she had done nothing they could use against her, and was approved eventually.

    This is all standard, so don't worry about it. it took 14 months for me to be approved.

    Take care, Annette
    Disneygranny01 replied to annette030's response:
    Thanks for the help. I haven't worked since 8/2001. They claim my credits ran out in 9/2007. My official diagnosis was 1/2008. 4 months after they claim my credits ran out.

    My PCP didn't give me my referrals to the specialists until 1/2008. But, I had trouble getting him to see that it was Fibro. When I brought up my symptoms possibly being Fibro he just said "probably". That was about 4 years before he finally gave me the referrals. He just kept treating the symptoms. IBS, Acid Reflux, Saying the joint pain was Artritis, It took me over a year for an MRI on my left knee. He kept sending me to physical therapy. He said my insurance required it.

    By the time the Orthopaedic surgeon got into my knee, he had to fix 2 areas. The MRI showed 1. The physical therapy made it worse. The PCP claimed he was following "insurance prodical".

    Now I have to prove I have had Fibro for years and the Dr was negligent in getting me the referrals. Hopefully my Psychologist records can prove that.

    When I was first aware that what I have is Fibro, I found this board. It was helpful to me to see others with my symptoms and to not feel alone. I was starting to think I was going crazy. Even after all these years my PCP just wants to treat the symptoms.

    I have severe sensitivities to meds. At one time the list of symptoms included a sensitivity to meds. I have noticed the list has changed over the years. I used to have that list. It also included dizziness, headaches, stomach problems, feeling your heartbeat in your chest, and too many others, that I can't remember. Now it's seems all about the nerves.

    I contacted a SSD atty. I have an appt tomorrow morning. Hopefully she can help me. Thanks again for your insights.
    Yellowrose90 responded:
    Hi going through this now. You need a lawyer! I'm using a Fibro/Chronic Fatigue Lawyer to appeal my SSDI and LTD insurance. It's a shame we have to hire lawyers but one must. Common for SSI to deny; some say it takes years, some less, depends on age, medical reports. I had a functional capacity test (4 hours) which my lawyer set up; which proves I cannot do even sedentary work. I found a Fibromyalgia specialist who concurred and a rheumatolagist. I've dealt with it for over 10 years not realizing what I had. Finally a melt down in November 09 and I'm waiting on my appeals for some income. I am 58 soon to be 59 so hoping to stay off work and collect my insurance and SSDI....I've worked all my life and had to giveup 80,000 year job; just couldn't handle the pain and stress blood pressure shot up and kept spiking never had high bp before in my life and my thyroid went from hypo to "hashimotos" quit functioning causing me chronic fatigue. You need a good lawyer and good doctors that support you! Good luck!
    angelldakota responded:
    Hi Disneygranny... I am sorry you got turned down... Seems they like to play a game with everyone... I got turned down 4 times... Just don't give up...

    I think a lawyer is a good idea... They are out there that will only take a certain percentage and no money out of pocket even if you lose...
    And you can relax and let them do the work... Well outside of all the paper work lol...

    Do make sure your Dr who is filling out the papers for SSD is behind you... That was one of my problems in the beginning until I got a lawyer I didn't know that... I didn't have a copy of the paper he filled out and didn't know what he said... but now a days... around here at least... you make an appointment and fill out the papers together... Then you know whose side he is on...

    I hope things can get worked out soon for you and I hope you can feel better... sorry I can't help you more... like Mimi said... our system is so broken...

    take care.. bless you.. luv.. jan/angelldakota
    annette030 replied to Disneygranny01's response:
    I hope the lawyer appt. goes well for you. I really think that is the best way to go. They know just what to do.

    Take care, Annette
    hza54 replied to annette030's response:
    I am denied for disability in my work and I aplied to ssi. I hire a lawyer to take care of my denials. They understand that i can make 10 hours overnight for 7 days. Can you imanage that sometimes I can not move. That now I am writing and my hand and body is hurting.
    The other day I was thinking that we should unite and make more noise as the breast cancer people do. I think that really people don't understand us. The other day my boss came to my home and she talk about other employees that have this and that. Finally she told mee that I have to do something that I can nnot be at home doing nothing. I smile inside of me and i realize that she evendo is a pharmacist don't know how is living with chronic pain.

    kate20770 responded:
    I use ALLSUP for my SSI case and they have been nothing but wonderful!! They do everything for me and they are nothing but pleasant! They are known for winning SSI cases for FM patients, they win over 70% of their cases for it. I would check it out if I were you, I also believe you pay them after you win, my LTD company pays for them for me in some shape or form, simply b/c they want their money back from what they've paid me, once I get approved for SSI, but whatever works. But whatever you do, it'll much easier with some type of lawyer and remember that MOST ppl get denied the first time and at least 50% get denied a second or third time.
    hisfaithful1 replied to kate20770's response:
    Hi Disneygranny, Maybe this can help you, or anybody else who is applying for disability.

    I too have applied for ssdi, I applied in late August. You should go to, there are forms you can copy called Medical source statement, it is for your doctor to fill out, and its about 8 pages, its where he can write all the things you cannot do because of your disability. I was a little scared to ask my doctor to do this, but he did, no problem.

    I made 2 copies, and filled one out myself, I knew my pcp couldn't know alot of the answere, like how long can I be up walking around before I have to rest, and similar questions. I took him the filled out one, and the empty one for him, and he was glad I did it that way, he even said thats what he would have told me to do. He didn't just copy my answers, he put what he felt I could, and could not do. Like the question about how much weight can I safely lift, I had put 25 lbs, but my pcp put no more than 10 lbs.

    Did you apply online? I did, and then they sent me a stack of papers to fill out, so I have to do it all over again. My caseworker said it's because they want to know more of the specifics of my work history, they want to know exactly what I did every minute I was working. It's crazy, how am I supposed to know how long I spent each day bending over, crouching down, kneeling,walking, standing, sitting,climbing, handling, reaching.. well, you get the picture. Plus most of this is answered in the medical source statement from the doctor. Ohh well, we do what we have to.

    I believe they try to set you up to make a mistake, or get tripped up. Example.. One ssdi worker told me on the phone I had 10 days to return it, but when I called with a few questions, I was referred to my caseworker.
    She told me to get the paperwork done asap, like today, try to mail it off today!? I said, I will do my best. then when I hung up I realized theres no way, I need at least a few days because I can only do some, then have to take a break, and so on. So I decided to put in a note and tell her I couldn't do it in a day, it was too much, and would cause more pain and fatigue as it is stressful.
    I know though that all I have to do is be honest. But the paperwork can be overwhelming!

    Next week my caseworker will call me to go over everything. I suppose they do this with everyone.

    I hope you and everyone else will keep us all posted here of how things are going, and I sure will too.



    MikkiBriteEyes replied to hisfaithful1's response:
    I am beginning to think SSI is an impossible dream. I was hit by a car 5 years ago leaving me with 3 ruptured discs, and it has hastened the degeneration of my arthritis. I have fibro, reynaud's,IBS, GERD, IC, autoimmune disease(every rheumy has a new diagnosis) my fingers swell like sausages and get open sores.
    I have inflammatory vasculitis, as well as blurred vision and migraines that seem to come with the territory.
    I have PTSD, severe depression (suicide attempts) hyper-vigilance, social anxiety/agoraphobia,sleep apnea and sleep paralysis.
    Last year I had a hearing voc rehab I could perform no jobs -after they had went through the list of conditions and limits of each. I was told favorable decision then received an opposite notice three months later.
    The paralegal had only included the FIRST diagnosis only and left out the transcript. SSA discredited their own doctor who agreed with the diagnosis saying he didn't have time to fully recognize the problem and didn't take into consideration my counselor's letter of recommendation and the psych eval they had done was full of misquotes and false statements.

    I appealed this decision and reapplied of course the application denied and then sent to the SAME adjudicator
    who conveniently lost the psych eval done by my counsellor so it would default to their previous exam. I actually asked her to make an allowance for euthanasia if the claim was denied and she LAUGHED at me.

    Any prayers or good vibes appreciated and I will pray for you
    DisneyGranny :)
    pcfulone responded:
    That is a weird reason to turn someone down. Never heard of that.

    I started right from git go with a lawyer. I just had my mental evaluation and am now waiting the final approval/denial. If I had not started with a lawyer, I would definitely get one for the appeal. I hope you have a better outcome when you appeal now that you are using a lawyer.
    pcfulone replied to hisfaithful1's response:
    Yes, the paperwork is repetitive and ridiculous. It took me a few day at least to get it done because there was so much thinking attached to it. Like you said, how long do you kneel, sit, stand, ect. Stupid!
    The phone call you will get asks pretty much the same stupid questions you already answered. I had a very nice lady call me so I didn't mind. You may also be required to go to one of their medical doctors and usually everyone has a mental evaluations before you finally get the decision. Good luck to you.
    Anon_2912 replied to pcfulone's response:
    I believe the reason it is so hard to get SSD is because so many people minipulate the system..

    Anyone can say they have Fibro, after all it is just unexplained pain, & there is not test to say the person is lying when it comes to Fibro.

    In today's economy greed/laziness have messed it all up....
    spiderslayer responded:
    They always deny you at least once...and everyone needs an atty to get their ssdi.
    I think it is a scam personally...but hey, you have so many people who fake it to get ssd, that they have to do something. best of luck to you:) ( I finally got mine)

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