how do you know when your disabled?

Discussion in 'Fibromyalgia Main Forum' started by sixtyslady, May 1, 2006.

  1. sixtyslady

    sixtyslady Member

    Guess what my rheumys nurse called me earlier,and told me my lab test where o.k. ,but my c.r.p. was alittle high, it was at 5 and 4 was considered normal.
    I was just honest with her and told her that I didn"t think I fit the criteria for polmyaligia.because I only had 2 of the listed symptoms, and that I had't taken the predinsone and just wasn't confortable with taking it because it had so many side effects. and I"m trying to detox my body right now, she was very nice and ask if she could relay this to the doctors I told her that would be fine, because I thought I may need a second opinion. well she called me back in less than a hour and said the doctor wanted to order pain meds for me . Mobic. I ask her if they where addictive and she said no, so I told her o.k. and thanked her.I can"t believe that the Dr, backed off of my taking the predinsone? but anyhow I feel like I"ve made some progess.now I feel I could benefit from a haddicap parking sticker how should I aproach the Dr for one? I really don"t cosider myself as disabled but my sister says she thinks I am, because I can no longer work, I avoid going shopping because I can"t walk that far and can"t stand for more than 5mins. also can"t clean my own house anymore. I have to stop because I"m crying. I just never thought of myself as disabled its just so hard to think of oneself that way. what should I do try to be brave or just accept it? hugs sixtyslady
  2. Adl123

    Adl123 New Member

    Dear Sixtyslady,
    Here is what my Dr. told me. I actually asked the question "How will I know when I'm able to go back to work?" and she answered:"When doing an activity for 8 hours does not put you in bed".

    So, I guess the opposite is true, If you cannot work a full day without getting sick or being in a lot of pain, then you are disabled. If having to walk across a parking lot puts you in pain, or depleats you so that you can't do anything else when you get home, then you are disabled.

    I bet your dr. will be glad to fill out a form for you.

    Good luck,
    Peace,
    Terry
  3. NyroFan

    NyroFan New Member

    SixtysLady:
    You know you are diabled when you can no longer do the things you used to no matter how hard you try. You know the difference between the way you were vs. how you are now.

    nyrofan
  4. IlivetocantoronXena

    IlivetocantoronXena New Member

    Hi there I sure hop eht mobi helps you, i had tried it for about 6 months with no luck. It really is not a pain pill.

    MOBIC is a nonsteroidal anti-inflammatory drug (NSAID) indicated to help relieve the signs and symptoms of osteoarthritis and rheumatoid arthritis.

    MOBIC was developed by Boehringer Ingelheim.
    Hope this info helps you.
    You may have RA, One doesn't always have a poss. RA fctor to have this. If your sed rate is high, i would aks your doc to RA.
    Always,
    Michelle

  5. kriket

    kriket New Member



    I am disabled and still going. I desperately need to do something. I end up in bed after working 1 day a week.
  6. butterfly8

    butterfly8 New Member

    Dear sixtyslady

    I know how difficult it is to acknowledge that you might be one of the people in the world who are disabled. Usually, we think that these sorts of things apply to 'other people'. It is always a fright, and often an emotional realization, when we really find out that we are the 'other people'. After 9 years, I still get wake-up calls when I realize that I am disabled. I notice it most when I mix with people I knew best in my professional capacity when I was 'well' and I can see them trying to pretend that I am still like I was.

    This info. really applies to cfs, but I think that you can use it to assess yourself
    There is a scale called Dr. Bell's Disability Scale. It is a scale from 0 to 100 which allows cfs peole to assess their level of disability and give their disability level a number or rating e.g., 20% disabled. It is a one page assessment scale which, while rather general, is useful - in my opinion.

    The scale is in a book called The Doctor's Guide to Chronic Fatigue Syndrome by David S Bell. (Addison-Wesley Publishing Company, Reading, Mass. USA)

    However, I got a copy of the scale from my cfs society, and so I think it is 'out there'. You might like to try to google it and see what you get. If you have no luck and really want to follow it up and seem to be getting nowhere, post me a request and I shall type the scale onto the message board.
  7. sherri_baby

    sherri_baby New Member

    This is a summary of a CFIDS disability scale from The Doctor's Guide to Chronic Fatigue Syndrome by David S. Bell, MD, published by Addison-Wesley, ISBN 0-201-40797-2.

    100:
    Patient has no symptoms at rest, no symptoms with exercise; has normal overall activity; is able to work full-time without difficulty.



    90:
    Patient has no symptoms at rest, has mild symptoms with activity; has normal overall activity level. The patient is able to work full-time without difficulty.



    80:
    Patient has mild symptoms at rest, symptoms worsened by exertion. Patient has minimal activity restriction noted for exertion activities only; patient is able to work full-time with difficulty in jobs that require exertion.



    70:
    Patient has mild symptoms at rest. Patient clearly notes some daily activity limitation. Overall, the patient functions close to 90% of expected, except for activities requiring exertion. Ability to work full-time with difficulty.



    60:
    Patient has mild to moderate symptoms at rest, with daily activity limitation clearly noted. Overall functions 70-90%. Patient is unable to work full-time in jobs which require physical labor, but has the ability to work full-time in light activity if hours are flexible.



    50:
    Patient has moderate symptoms at rest, and moderate to severe symptoms with exercise or activity. An overall activity level is 70% of expected. Patient is unable to perform strenuous duties, but can perform light duty, or desk-work 4-5 hours per day, requires rest periods.



    40:
    Patient has moderate symptoms at rest, and moderate to severe symptoms with exercise activity. The patient has an overall activity level of 50-70% of expected. Patient is not confined to house; is unable to perform strenuous duties, but can perform light duty/desk work 3-4 hours/day, but requires rest periods.



    30:
    Patient has moderate to severe symptoms at rest, and severe symptoms with any exercise. Patient has overall activity level reduced to 50% of expected; is usually confined to house. Patient is unable to perform any strenuous tasks; is able to perform 2-3 hours of desk work per day, but requires rest periods.



    20:
    Patient has moderate to severe symptoms at rest; is unable to perform strenuous activity. Overall, activity levels are 30-50% of expected. Patient is unable to leave house except rarely, is confined to bed most of the day, is unable to concentrate for more than 1 hour/day.


    10:
    Patient has severe symptoms at rest, is bedridden the majority of the time. Patient has no travel outside of house. Patient has marked cognitive symptoms preventing concentration.



    0:
    Patient has severe symptoms on a continuous basis, is bedridden constantly, and is unable to care for him/her self.


  8. sixtyslady

    sixtyslady Member

    On the test for cfs, I would say I"m some where between a 25 to 30, so do you think I could be eligble for a haddicap parking sticker?
    Its just that if I could get closer to the door at walmarts then I could use one of their electric shopping carts.and get what I needed. my real problem is standing in line at the check out I just get so weak and hurt I can"t take it.
    and now that spring is here theres just so much more work to be done around our house with lawn and everything.
    my husband just doesn"t have time to go to the store and shop. I feel bad enough as it is not being able to keep up with the house work anymore. If we can just make it through one more year my husband can retire.and maybe things won"t get so far behind.
    also after he retires we won"t be able to afford the Ins, he is a veteran so he can go that route. I"m hoping I can get the DR to give me a statement that I"m disabled so I can get on Medicade before I"m 65. My sister suggested that I try. thanks for all the help. hugs sixtyslady
  9. thirkmom

    thirkmom New Member

    I read an article about a lady with CFIDS & Fibromyalgia and she was a mess. I handed the article to my husband and said, "I'm glad this isn't me. How does she function?" My husband read the article and started laughing. When I asked what was so funny he said, "this article is you." I went into a little tizzy and told him that I don't do this and I don't do that and he just kept nodding his head saying, "yes you do--yes you do..." I didn't realize that his perspective is a lot more accurate than mine now. I think I can conquer the world most days as I crawl to my bed at 3:00 in the afternoon and don't get up until after 10:00 the next morning.

    I guess disability is all in the perspective. I'm choosing to not be disabled in my head (most days)but my body doesn't want to agree. LuAnn
  10. butterfly8

    butterfly8 New Member

    Dear sixtyslady

    I think you would qualify for a disability sticker. I am 20-30% and have one. I don't always have to use it, but it is a goodsend when I really need it. However, I am in Aust., so the rules might be different.

    I think a lot would depend on your doc. and how you approached her/him. Take the scale with you, as that might help the doc. see how you really are.

    I try to think of having the sticker this way - if I can save a little strength and energy by using it, I can make my day a little richer. For example, if you use the sticker and then have a little more strength to pay more attention to your husband or family, then everyone is a winner.

    Also, I think it takes more bravery to accept the reality of disability than to try to soldier on and avoid confronting the reality.
  11. carebelle

    carebelle New Member

    I had a doctor say to me he did not think I would qualifiy to be able to get a parking sticker even after I told him I have pain 24-7 that nothing helps.I can not walk but a few yards at a time .I really do not go out much my life consist of going from my bed to the couch daily.I have not been able to work for 6 years .I have not been able to do my housework ,I spread things out because I cant do alot at once or I end up in bed totally for a few days.Its hard to pull my wash out of the washer and dryer because of the pain I have in my arms.I told him I needed pain meds and that I am really begging for help.He finely told me to go to DMV and get the paperwork and hed see if I needed it.I think actions speak louder then words.He must not beleave that FM/CFS is a real Dx.I have just now gotten to where I can ask for help (Guilt feelings)when I do.I am learning what my limits are because I have no choice .Its not that I have caved in or given up ,its that I want to have a better quality of life.And I am trying to save energy so I can do somethings for myself.The Doctors do not help when you ask for help and they look at you like why are you asking.They do not know me as a person they do not know how hard it is for me to ask for help.This sticker may mean to some that I am handicap,but to me it means I deserve to be able to take care of myself.Its ok to realize my limits.Its ok to make the decision to get a parking sticker instead of just not going out at all and trying to do for my self.Thank you for letting me vent.
  12. sixtyslady

    sixtyslady Member

    if we have a sticker at least we"re trying to do something. so I think your right, I"m going to ask the Dr the next time I go in May. sixtyslady