Went to FM Conference and got disability info

Discussion in 'Fibromyalgia Main Forum' started by EllenComstock, Mar 26, 2003.

  1. EllenComstock

    EllenComstock New Member

    Hi, Everyone:

    A couple of weeks ago I posted that my husband and I were attending a FM conference in Cincinnati, Ohio on March 22. I would have posted earlier, but I was just too tired
    from the trip and other things.

    Anyway, I think the conference was good and had lots of good information. Some really good, knowledgeable people were there-Jacob Teitelbaum, Devin Starlanyl, and several other people (can't remember names or spelling this morning-bad fog day). There were three doctors and two lawyers that spoke throughout the day. There was also an inspirational speaker during the lunch who was so severely disabled with FM that at one time she was in a wheelchair, but she is doing better now. I had an opportunity to speak with her afterward and she may come to my support group and speak. I lucked out and she has family in my neck of the woods and will be here this summer. The one thing that was so hard is that it was one day-10 hours. That would be long for anyone, but especially for those of us with FM. They kept reminding us throughout the day to get up and stretch as needed.

    My husband and I took a lot of notes. We were especially interested in the lawyers who spoke on getting disability. The one lawyer was from Arizona (can't remember his name), but he travels throughout the country representing people trying to get disability. Here are some suggestions for getting disability:

    You need to start documenting and making your case now even though some of us are still working and not planning to apply for disability right now. Start a diary on how you feel each day. It doesn't need to be long. Talk about bad (and good) nights and days, how it affects you when you are in pain. Talk about things you can't do on bad days. Include the type of medication you are on and how often you need to take it. Be sure to keep this updated.

    Don't quit your job, especially if you have disability insurance. Once you quit, you have lost the insurance. Also, it looks better for your case if you take a leave of absence rather than quit.

    Get letters from family, friends, and co-workers. You need people who have known you for awhile who can document that this disease has changed you. For example, they might say that when they first knew you five years ago, you were more active, you were able to shop for several hours, rarely missed work, etc. and now that has changed. If they didn't know you when you were better, then they can just say things like you miss work a lot, you often look tired. It's better for them to say things that they have personally observed, not things you tell them. Of course with co-workers you will have to be really careful to pick people who will help you and people you can trust not to "spill the beans" that you may be applying for disability down the road.

    When you are describing how this disease has affected your daily life, be specific and detailed. Don't say things like I can't shop anymore. Say that you used to be able to shop for several hours, and now you can only shop for a half hour, then you must go home as you are too tired, the lights and noise in the store is too much, or whatever.

    Are there any jobs that you had to quit because you could no longer do this type of work? Can you get your former boss to write a letter verifying this? Anything you can put in your folder to document what you are saying is true. The one lawyer said it was important to "stuff your folder" before you go to Court, because once you go, you can't put more information in.

    It's important that you find a good doctor now who understands FM and will help you when and if you apply for disability (I know, easier said than done). When you decide you need to leave your job, get a letter from your doctor saying you need to be off work. Never say you are permanently disabled and don't plan to return to work. Always say that you are planning on returning (even if you don't think you can). Unfortunately, you have to wait several months before applying for disability. (they didn't say how you are supposed to live and pay bills in the meantime. I guess try and save up money beforehand) If you do it immediately, then it looks like you are not trying to get better to the judge.

    It's better to have an attorney who specializes in disability cases since they know the system. The lawyer said that more judges recognize FM and CFIDS now than they used to, but unfortunately some still do not see it as a disabling disease.

    When and if you get your disability benefits, still never say you will never be able to return to work. Always make it look like you are trying to go back. When determining your disability benefits, they look at your last ten years of work and your earnings. So if you quit your job, then wait a year or two to apply, then you will have those years when you didn't work and they will count as zeroes on the amount of disability you receive.

    Well, I think that is the main part of the disability info. I hope this is helpful. The speakers also gave us their e-mail addresses, but I know you can't post these here. If anyone wants them, give me your address and I will let you know.


  2. afeni

    afeni New Member

    I wish I could have gone. My daughter and I both have fm, and my husband has been working two jobs. And its been killing me. I need him so much at home. And I don't say anything, because I know we need the money.

    I want to try to apply, because He doesn't make enough with his military paycheck, and both my daughter and I need alot of help.
    Thanks again for the info,lol Afeni
  3. kadywill

    kadywill New Member

    I went on LOA from work November 10th and I haven't been back. The doc took me out due to spinal stenosis, yet there are other condtions that disable me. I applied for SSD on December 18th and I was planning to notify SSA if I should recover enough to return to work. I LOVE my job so much.
    I don't drive right now because I am sedated and dizzy from the meds and my Fibrofog; my husband takes me to the store or he goes by himself. The lights, noise and crowds make me feel much worse. I can't bend or push the buggy well. All of my friends and family are astonished at my physical appearance. I have just been scheduled for my Psych. examination; April 9th @ 0830. I am nervous about it! Can your husband be with you? I need him there.
    Thank you for posting this~~I needed it.
  4. Frackie11382

    Frackie11382 New Member


    If you could send me some info on those speakers it would be greatly appreciated....my email is WackyFrackie@hotmail.com


    Friends in Fibro,

  5. Fireball

    Fireball New Member

    I wish I could have gone to this conference. I knew about it but after working full time all week, it was just way too much for me to try to get there, even with my husband driving me. I wish that I could get any info that you obtained there. I know we should not post our e-mail address so I am not sure how I could receive info from you.

    I also knew that even if I could manage the two hour early morning drive, sitting in a chair all day would not be possible.

    I wonder if they will ever have another conference? I believe it may have been sponsored by a pain clinic.

    Thanks for posting info about this conference though!!!!
  6. EllenComstock

    EllenComstock New Member

    who replied. I'm glad that the information I got at the conference was helpful. Yes, this conference was sponsored by the Blattman Pain Clinic. They talked about making this conference a yearly event. Yes, the sitting was very difficult for me. In fact, I missed the last 45 minutes. Fortunately this conference was held in a hotel where my husband and I had a room so I was able to go lay down. My husband stayed on and told me what had happened. I missed the segment where all the speakers were up front and answered questions. I think there were close to 300 people there. I think a lot of them, like me, had a spouse or another "normal" there with them.

  7. lindasue

    lindasue New Member

    Dear Ellen,
    I would love the website addresses you mentioned...Would you please email the info to dlindasue1@aol.com..
    Thank you for the indepth post.....It was VERY informative!
    Hugs and Blessings,
  8. Achy-shaky

    Achy-shaky New Member

    Was the attorney from Arizona Scott E. Davis? If so he has articles posted in the library here. He is very helpful - I have emailed him questions which I needed answered to get started with the process of filing for SSD/I. Now I'm in process of getting letters from former co-workers, family, etc. I just went to the physical & mental exams they sent me to so now I wait for that first denial so I want to be ready when I need to appeal.

    To answer a question from (sorry forgot the name) on taking husband with to exam - by all means take him with - it will help your case for them to see you have hard time getting around without him. I also took minimal pain relievers so they could see how bad I am without it.

    Thank you for taking notes and giving us all this great info. Please send me the info you have to: mcmomma2002@yahoo.com

    Bless you for taking the time and effort to go to conference. I know how exhausting it must have been.
  9. blondieangel

    blondieangel New Member

    that you are referring to attorney Scott Davis. He was my attorney, practices all over the US, speaks at conferances, and lives in Arizona, and posts great articles on this site!. And, yes! After 2 appeals, I won my SSD case!;-)
  10. EllenComstock

    EllenComstock New Member

    Yes, the attorney from Arizona was Scott E. Davis. I just couldn't think of his name yesterday (bad brain fog day). He was an excellent speaker and I learned a lot from him. I had heard of him before and have read several of his articles.

  11. crimsonfox

    crimsonfox New Member

    Thank you for taking the notes i am in the process of building my case and the info you provided was wonderful. I would also like the info on the speakers. ghorn@netgripper.com. Again thank you.