disability review?????

Discussion in 'Fibromyalgia Main Forum' started by crickett, Jan 8, 2010.

  1. crickett

    crickett New Member

    has anyone had a disability review??? I received my letter today and had a whole bunch of papers to fill out. I have been stressed out to the max. I am having a fibro flare really bad. I do not go to the doctor all the time i just mainly stay with my chiropractor,take my meds and go for my checkups. I mainly watch what i eat and always am reading and praying for this xmrv to turn into something positive for us who suffer dearly . I am really scared they will tell me that i do not live at the doctor enough . On 1 of my questions it asks what do you do every day. I just want to tell them you live with this dam disease. I fight every day with this. I do not know how to plan my days !! Please anyone who has gone thru this pleaseeee let me know what to expect. I would die if they kicked me off. What money i get i use it sparingly for my supplements and meds. Its bad enough living with this. I just do not know what to expect.
    thanks crickett
  2. lela7

    lela7 New Member

    I don't know which country you are in but I am sure you will find some helpful information from this page on this site:


    It's about Tips for Winning a Fibromyalgia or Chronic Fatigue Syndrome Disability Case...and...What actually happens at a Social Security Disability Hearing?

    With the information you find here you will probably find what you need to fill out your form without it having to go that far
    From what I understand the reason you are receiving the benefit is because you are unable to work. If you are still unable to work you just need to tell them what your symptoms are which prevent you from this. If your symptoms haven't changed since you first applied then you can write the same as you wrote the first time, the hardest part was getting them to accept the inital application. Keeping copies of everything is always good for future reference as we can tend to be forgetful.

    Not going to the doctors all the time should not be a problem in my opinion. There is only so much the doctor can do and as you say you have been receiving treatment elswhere for your condition and the chiropractor would be able to supply you with a supporting letter for S.S. if they are asking for any. Also I would imagine you will be required to have your doctor fill out a form in relation to your condition. If you go back to the same doctor and tell him, if you haven't already, that you have been attending the chiropractors for treatment which gives you some relief then he will have something to write on his form as ongoing treatment you have been having for your condition along with your supplements and meds in which case you probably won't need to supply a letter from the chiropractor.

    In regards to the question what you do every day. I'm sure you need to get ample rest every day and take every day as it comes. We can only do as much as our pain and other symptoms allows to on any given day as the severity of our symptoms usually goes from bad to worse to bad. Most of us I think struggle to look after our personal needs from one day to the next
    The major thing here, and it's easy to say I know, is to try not to stress as this is not good for you as you already know. I recommend if you don't know what to expect as you say then expect the best outcome.

    Hope this is of some help to you.

    Kind regards
  3. crickett

    crickett New Member

    Thank you lela7 for your commets . I went to the prohealth library to pull up this article and have had no success . I do not know if i am doing it right or not. Please let me know if there is a different way on how to do this , I have been racking my brain on trying to remember all the doctors who have treated me in the past. I know they will get all my medical records when they do my review. It just scares me to death. That i cannot remember everything. I did write about that i do not know how to plan a day !!!! that fibromyalgia i basically have to do the best i can. I did not sleep at all last nite worring which does me no good. And i am flaring major. I will keep on trying to look in the prohealth library.
    thanks crickett
  4. lela7

    lela7 New Member

    Your very welcome.
    If you copy and paste this site or type it in:


    in your google search bar it will take you to a page which gives you sites to select from. On my computer it has the first site as: Tips for Winning a Fibromyalgia or Chronic Fatigue Syndrome ... when you go to that site it is the one on Prohealth I was referring to.

    The other way is in the Research, News and Articles bar at the top of the Prohealth page, select the ARTICLES box and type or paste in:

    Tips for Winning a Fibromyalgia or Chronic Fatigue Syndrome Disability Case...and...What actually happens at a Social Security Disability Hearing?

    It will take you to two articles. The first article being the February article and is the one I was referring to, double clicking on it will take you straight to it. Let me know if you have a problem with it.

    For further information which may be related to your specific country you can do a search on:

    Social security reviews for fibromyalgia in your search bar. You will also find plenty of info there.

    I understand the anxiety of having to deal with being required to do a review and the effects it can have on your physical and mental state making it even harder to deal with but the bottom line is you have had the condition diagnosed already, you haven't recovered enough to go back to work so you just need to go through the S.S. process so that they know your condition hasn't improved enough for you to go back to work and according to you it hasn't and you know you better than anyone.

    If you go back to a doctor you've been to who agreed with your diagnosis you shouldn't have a problem. Of course the doctor who did your S.S. application would be idea (because you know already he didn't have a problem with doing your original application) but not necessary.

    If you want that doctor and can't remember who it was you have a right to access information relating to you from S.S. and they would have the original application with the doctors name on it so you could start by ringing S.S. to see if they will tell you over the phone. Again just see it as a process which you can work through. Or you might feel more comfortable trying to find out the name through Medicare if you know the date or maybe year would be enough if Medicare was used in relation to your doctors visit

    If it is affecting you too much to deal with you can give someone else permission to do it for you due to you being unable to because of your health, it should be there on the review where it asks are you the patient who filled this form out or someone who did it for them or something like that.

    You can always ask for an extention of time to complete the review due to your current health interfering with completing it, should be just a phone call to S.S. which someone may be able to do for you if it's too stressful for you and you don't feel well enough to do it yourself. You should be able to verbally give permission to S.S. over the phone for the person you choose at the time of making the request for an extension.

    Hope there is something here which may be of some help to you.

    My heart goes out to you but my advice to you is not to worry unless they give you something to worry about and you don't need to worry about the review process itself or you may go through all this extra suffering for nothing.

    If you were to receive the worst case scenario, which I think is unlikely, don't forget there are appeals and then more appeals you can do.

    I would love to know how you go with it.

    Kind regards
  5. TeaBisqit

    TeaBisqit Member

    I know the feeling of being terrified when the review comes up. I might be getting one this Oct. I got out of it last time because I wrote a long letter detailing everything I go through with this disease and how disabled I am from it. Whatever I said worked cause they sent me a letter saying I didn't need a medical review that year.

    IMO, they shouldn't do SS reviews on anyone who has been disabled with this disease for more than a few years. Obviously, if you are well past two to five years and still fully disabled, it's not going to go away anytime soon.

    My lawyer said that they have to prove you have improved and that you can work. And he said if you've been on it for years, they won't really bother. Just put down that you are not better and may have gotten worse.
  6. crickett

    crickett New Member

    Thank you both lela7 and tea bisqit for all of your information. I live in indiana and it has been on disability for 5 years . I went thru all of my old blood tests ,dating back to 2004 where they tested me for viruses and i found that paper i think i tested for 4 different virsuses . Also i found blood tests dating back 2006 and 2007 stating that i had a abnormal wbc count. so i went looking on the internet. And if i am reading it write,i have a infection in my white blood cells???? Anyway i did write that i have seen 12 doctors and specialists since becoming disabled. And basicaly said there is only so much doctors can do . I do see my chiro doctor regurally . But i just take it 1 day at a time and do the best i can do i do see my regular doctor every year for a physical and continue on my normal meds. I would go to a doctor in a heart beat if i could find a doctor who understands fibromyalgia in indiana so far i have not found a doctor who is understanding what we go thru. I am like everyone else here on the board trying to cope and praying for a cure. weather it be xmrv or praying that i will be able to find a doctor that would allow me to try the ldn. I am just so chemical sensitive to meds. anyway i hope all the blood work copies i send ss along with copies of my virsus blood test and a brief letter on how i cope will do . I am just going to pray alot . It just makes you feel so vulnerable to know we have to still live on the edge and deal with this dd too.
    thank you
  7. lela7

    lela7 New Member

    Well done crickett, sounds like you have it all together with the review.

    Looking for a doctor who understand Fibromyalgia in Indiana? Go to this site:

    http://fmcfsme.d-3systems.com/doctor_database.php?c=United States&s=Indiana#city

    Seems there are quite a few. Names, addresses and telephone numbers provided. Some even come with patient recommendation!
    Scroll down on this site to choose a suburb in Indiana closest to where suits you.

    Things are changing for the better already!

    Please let us know how you do with your review as it may help others to know.

    All the best to you