Rheumy will not sign my disability form;

Discussion in 'Fibromyalgia Main Forum' started by gapsych, Jun 25, 2008.

  1. gapsych

    gapsych New Member

    I really need some feedback.

    I have been on disability for four years for the FMS and CFS/ME.

    I have to have my papers in by July 1st. I have to have two doctors to sign the papers once a year.

    My PCP signed the papers without a problem. However when I called the disability office, as the papers were to be finished by today I was told that my rheumy will not sign the papers.

    I called her office and her nurse said she never signs disability papers for Fibro/CFS. The nurse mentioned that the doctor had not even looked at my record. She said that she has had many people who are very upset that she will not sign off for FIbro. She is the only rheumy who sees Fibro patients. Two weeks ago I saw her for the pain increase and she gave me darvocet which maybe helps for an hour. I was surprised at what the nurse was saying. She even mentioned that she has seen the ads on TV. I think she was trying to send me a message without getting herself in trouble. But like I said I am not thinking ckearly.

    My rheumy is out of town and will not be back until tomorrow when the nurse will ask her is she would be willing to look at my records.

    I am so mad as I am usually at about 40-50% and when I take Provigil I am about 80% functional for about six to seven hours. NOt enough to go back to work. I am making almost 55,000 less on disability. Who would chose to do this just because they do not want to work.

    This is my only source of income.

    If anyone has run into this problem, I would appreciate your experience of if someone has any ideas this would be greatly appreciated.

    I hope this makes sense. I am not feeling well today and the emotional stress from this is not helping. I can hardly think straight.

    THanks in advance.


    My pain level when I went into the hospital and off and on the last several months has been an eight but that has been when I am in a flare.

    [This Message was Edited on 06/29/2008]
  2. marti_zavala

    marti_zavala Member

    I know you are overwhelmed but please join the yahoo group, disinissues.com. They may be able to help you.

    Good luck,
  3. CockatooMom

    CockatooMom New Member

    about your rheumy doc (quack). I can't imagine the frustration you are feeling. Who has signed your disability papers the previous four years? I'm sure you have already thought of going back to them.

    I cannot help, but wanted to send you my love & support.
  4. BlueSky555

    BlueSky555 New Member

    I'm sorry to hear that your rheumy will not sign the form for you. Is this the Rheumy that signed the form for you in the first place?

    I wish I could give you some advice but I just don't have it. I haven't even had my hearing for disability yet.

    Does the provigil give you energy or help with the pain? I'm just curious because I have it but only take it when I can't stay awake (narcolepsy). I know that my doctor told me to get some b12 complex for energy.

    I do hope you get the answer you need from your drs. office.

  5. gapsych

    gapsych New Member

    I think I have a few more ideas thanks to all who replied.

    I just can not believe this.

    My disability is private from teaching so many years. So I am lucky in that sense.

    The doctor is a new one as I moved to where I am at the end of last year.

    I think I will request to talk to my doctor personally.

    I do not want to call my disability counselor until they get the other letter or I may call her tomorrow. I keep going back and fourth on that one.

    Next week she will be gone for three weeks and my present PCP is leaving. I have not met my new one yet.

    It just keeps getting weirder and weirder.

    She is not that bad of a doctor as far as treatment goes but she is a bit scattered and I worry that her notes are not extensive. But to not even look into the file because she has this policy is ridiculous. Since she is the only rheumy that treats Fibro. which is astonishing considering this is a a large hospital, she would not necessarily remember all the details of my case.

    Bottom line is that I might not get a paycheck next Tuesday.

    Thanks again, GA[This Message was Edited on 06/25/2008]
  6. gapsych

    gapsych New Member

    You are a sweetheart.

    I think I have a good case so am hopful that things will eventually work out. My big worry is the time crunch but this has to have happened before and at least my PCP who treats a lot of people with Fibro. has signed the papers. Maybe they will give me a stay for the second opinion.

    Actually, my rheumy is very good but I have a feeling that she is a little anal retentive.

    As for the quote. No wonder with that attitude doctor's do not believe us about these invisible illnesses. Tragic.

    Hey, I need all the attention I can get!!!

    If needed I will go back to my personal lawyer who has the PI and talk to him again.

    I will prevail!!! I am a survivor!!!!

    Again thanks,


    [This Message was Edited on 06/25/2008]
  7. jmq

    jmq New Member

    Hey GA...

    Just wanted to say I am glad you are back with us. I missed you. I am so sorry you have been in and out of the hospital. That costo is horrible...in addition to the FM pain!..and now this aggravation.

    I am not surprised by your rheumy. I am in the appeal process with SSDI and my two doctors were the ones who told me I should stop working and have filled out all the disability forms for my LTD and SSDI over the last two years. Now Allsup called me and said that they have not recieved any records or questionaires back from the docs and one actually said ( the nurse ) that she no longer completes disability forms. I just made an appointment and cried my heart out to her. She caved and did it but said it is so time consuming etc..... I reminded her that this was a matter of SURVIVAL for me...she then did it in less than 5 mins.

    Then I did the same with my other dr. He also did it while I sat there crying. What a shame we have to be so desperate for what we deserve. Both you and I have worked our entire lives helping others...working our butts off...and now we have to make ourselves sick begging.

    Well, my friend, do not give up. I think the docs just need to look us in the eyes and try to say no! I wish you luck. Please let us know what happens.


  8. gapsych

    gapsych New Member

    THank you so much. It means a lot.

    Before I moved I would make an appointment with the doctor and at that time would get the forms filled out. Fortunately, it is not a very long form.

    Since I moved, I did not find out until last week at my PCP's appointment that he could not fill them out. However, he was nice enough to make sure that the documentation was there, especially since I am new to their system. He added info about my brief hospital stay and the fact that he was forwarding to my new PCP that if the pain continued he would like to see me referred to the pain clinic. Usually, my fatigue is worse than the pain. He wrote extensive notes.

    AT any rate, I somehow managed to be able to get what phone calls I needed done. I have no doubt I will get the disability.

    It's amazig what you can do when needed but I am exhausted tonight. However,I keep thinking how tough it was to make those calls, how tough it has been to be so pro active about my health care, not because I am a super strong person but because physically I have been able to.

    What about people who are even sicker whether with this DD or any other illness? Our health care is in crisis.

    Okay I will stop venting. I have decided I am going to take a long bath and read a trashy mystery and let my body and mind rest up for tomorrow.

    Thank you.

  9. gapsych

    gapsych New Member

    THanks for your reply.

    I am more saddened than angry for others lack of humanity. It is not a reflection of us but of them.

    Pitiful, isn't it? Like you I have had my eyes opened.

    But have been doing what I can to remedy things.

    I am much stronger than I look which is strange as you have never seen me, LOL!!

    Hope things are well with you.

    Take care and thanks.

    [This Message was Edited on 06/26/2008]
  10. Honora88

    Honora88 Member


    This is horrible! You would think he would have warned you otherwise why should you waste your time? I went through the same thing but with my primary care.

    You should really rehearse what you will say to him and make sure it is convincing and that the picture is painted as to how his not signing the paperwork impacts you. At this piont, you can hope for a miricle and hope that YOU are the one person who can reverse his opinion of fibro patients and make a difference for others. I know this is hard advice,t but when I am in an impossible situation and there is no way to go but forward I assign myself the job of selling the other person to my point of view and to have them really see what it is like to be on the other side.

    Questions such as, "What would YOU do if you had a great job, a good family life and a healthy lifestyle and one day you lost everything you had, are in debt, lost some of your friends and your family doesn't support you. What would you do if you have brain fog, if you don't recognize yourself?
    If people are telling you it is all in your mind? How does this make any difference for me even if unconsciously it is?
    What would you do if you lost everything important to you, your house your car, your job, your self esteem, and everyday is a fight to cope and survive the symptoms on top of everything else? THis isn't just muscle pain. I have problems remembering my daughter's name, I forgot my anniversary, I had to stay home for a funeral, i can't take care of my sick mom.

    I go to find a rhumy who actually acknowledges fibro, I think he is on my side and understand and after 4 years he tells me he won't support me. What would you do in this sitaution? How would you pay your bills? How humiliated would you feel if you had to declare bankruptcy and go to food kitchens?

    Do you think your job is just to manage my symtoms? Do you think drugs can cure every symtom and mask every symptom?
    What if it didn't? What would you do then? Do you ask yourself how a patient has to deal with their illness after they leave the office? It's not nice and neat. A pill isn't going to make everything go away. I wish it would.

    Tell me what options I have and what you would do differently.

  11. ephemera

    ephemera New Member


    I don't have any answers just suggestions which will be brief as I'm not doing well.

    Can you get an extension on the deadline?

    Can you physically go & sit in the doctor's office in order to talk with the doc.

    I've had to do this in order to get my records 2xs.

    FYI, I had 2 rheumies who wouldn't fill any forms. One wouldn't even complete the form for disability parking.

    very best healing thoughts to you
  12. Rafiki

    Rafiki New Member

    I'm so sorry you're going through this. I wish I had something helpful to offer but, being a Canadian, I don't know your system. Really, really sorry you have to deal with this.

    As to the other revelations herein, what can one say. Pretty sad stuff. Frankly, I'm kinda stunned.

    Rise above, as you do!

    Peace out,

    PS Hi Kina, I haven't see you for a long time! Where ya been?
  13. Rafiki

    Rafiki New Member

    I miss you. My 25 year old "kid" is living with me now. I hear ya!!!

    I'll keep an eye out for ya.

    PS Ok, thanks Gap

    NOW What is Gapsych gonna do???!!!
  14. gapsych

    gapsych New Member

    This is what my plan is. I can only talk to the nurse at this time as the doctor is at another clinic until Monday. The nurse suggested to emphasize my symptoms and disability level and especially the fact that I have CFS which the doctor has checked off when I have seen her. She will see the rheumy when she comes in to check her mail and talk with her tomorrow. However realistically speaking it will probably be Monday. Monday is the day I have to have this all in. However they can fax the papers and send the hard copy.

    Since my disability provider has the letter from my PCP, I am going to ask for a stay of execution, LOL!

    Rafiki you might want to look at my first reply to you as I have edited it.

    Thank you for your support as well as others. This is helping me so much getting through this period.


    [This Message was Edited on 06/26/2008]
  15. Its funny how some drs. are. My rheum. dr. woouldn't give me a handicap parking tag, but my family dr. said no problem and gave me one for five yrs.

    good luck
  16. gapsych

    gapsych New Member

    After reading other's experiences and doing a bit of research it looks rheumy's do not want to do disability papers. Some of it may have to do with the unfortunate thinking that anyone could say ouch to the 18 tender points.

    But an astute doctor does not stop there.

    Even the rheumys who do not think this is a made up disease, may be afraid this invisible illness could get them in trouble if someone is faking.

    If my insurance company is watching me they will see me not get out of the house for days at a time. No heavey lifting either, LOL.

    Thanks for your response.


    [This Message was Edited on 06/26/2008]
  17. gapsych

    gapsych New Member

    THanks for your reply.

    What really gets me is that my rheumy only looks at the FM/CFS label and not consider signing on an individual basis.I am sure the same thing could be said about other invisible illnesses that may sound innoculous but have a horrific impact on a patient.

    When the nurse gave her the papers, she did not even get a chance to tell her my name. Just said that it is not her policy to sign disability forms. I was stunned, to say the least.

    I am in the process of writing a letter explaining the impact this disease is having on me. I am actually kind of following the disability form. I am then taking the letter to her on Monday when she will be in. I just listed the facts. At the beginning of the letter, I state that I would like her to consider my case on an individual level.

    I have no idea if this will work.

    In hindsight, I wish I had asked someone to help me with the running back and forth to the hospital and such as I have not been well lately.

    If only I had known.

    Fortunately, my PCP who has extra training in neuromuscular diseases, has signed the papers and wrote extensive notes. I had an appointment with him last week and asked him if he had received the disability papers. He had not but took about 15 minutes making sure that everything was documented in his notes and even asked if I had anything to add. He got the papers on Tuesday and signed them.

    If you are not up to it, see if someone can help. I am lucky that my disability insurance is private and the forms are not long. I was approved the first time without a problem.

    Good luck,


    [This Message was Edited on 06/27/2008]
  18. erica741

    erica741 New Member

    I know that bureaucratic policies are often rigid and don't always make sense, but why do you need 2 doctors to sign the form? What if you are only seeing one MD? If you weren't seeing a rheumatologist, would you have to start seeing another random doctor just to get an MD to sign the form?

    ok, I'll stop nitpicking your disability company's policies, since I'm sure they are even are even more frustrating to you...

    Some specialists have a policy of not getting into the disability paperwork. They are busy with patient care, and believe that disability paperwork should handled by the PCPs.

    I don't know if you are going to get anywhere with tracking down your rheumatologist to bend her rules for you. It's definitely worth a try, but you might want to have a solid back-up plan.

    Would your disability company be willing to review copies of the office notes from your rheumy in lieu of her filling out their forms? You rheumy has to give you copies of your medical records, and yours should indicate your treatment plan and level of disability.

    I am currently negotiating with my disability company because my LLMD has not yet completed the form they require from him. I called my disability rep and explained that I cannot force him to complete a form if he is too busy to get to it, so I will send them copies of all my medical records from him. I am going to continue to try to get my LLMD to complete the form, but in the meantime am keeping open communications with disability rep that I am sending them as much info as I can.

    The bottom line is: whatever policy your disabilty company has, they cannot cut off your benefits if you are disabled just because one of your MDs refuses to fill out their form - especially since your PCP has already submitted the required information attesting to your disability. They need be flexible, and allow you to either submit medical records in lieu of the form OR give an extension to give you time to see another MD to fill out their form.

    If your disability rep is giving you a hard time, I suggest you type up a letter explaining your situation and asking them what your options are to satisfy their requirements and keep your benefits coming.

    My final bit of advice is that unless your rheumy is super and worth all this hassle, find another one who is willing to cooperate so you don't have to go through this hassle every 6 months.

    Good luck!

    [This Message was Edited on 06/27/2008]
  19. gapsych

    gapsych New Member

    I am too tired to respond individually but want to thank you all. I have the letter written which I will also fax to my disability counselor.

    So I have done everything that I can right now. The waiting for Monday has really upped my anxiety.

    But guess what? The antiinfammatory medicine kicked in last night, it has been two weeks and physically I am feeling better than I have in months. Mentally I am kind of shaky. I want to get this done and over with.

    Again thanks to all.

  20. erica741

    erica741 New Member

    It sounds like you are on the right track appealing to your rheumy AND cc-ing your disability counselor so that he/she knows what's going on.

    If your rheumy still won't fill out the form after your appeal to her tomorrow, I recommend getting copies of all your medical records from her. Sending your records along with your letter requesting her to fill out the form - and another letter explaining that she refused to complete the form due to office policies - might end up satisfying your disability counselor's requirments.

    I'm glad you are feeling better physically. At least you have some energy to deal with all this unnecessary stress.

    Good luck with your rheumy tomorrow! Keep us posted on how it goes.

    [This Message was Edited on 06/29/2008]