How many work fulltime when at 50 rating on disability scale?

Discussion in 'Fibromyalgia Main Forum' started by TerryS, Sep 19, 2006.

  1. TerryS

    TerryS Member

    I've been on short term disability now for 5 weeks. I have a lot of time to think about my own situation.

    I got cytomegalovirus in 2002 and haven't been the same since (energy wise). In June 2005, I started having extreme episodes of weakness, exhaustion, pain, etc.

    I work from home as a medical transcriptionist. I have managed to work full time from June 2005 until August 2006. I managed this because I had the luxury of clocking out and lying down anytime I needed to. Problem was, there was ABSOLUTELY NOTHING else that got done. No laundry, no cooking, no cleaning, (sometimes no embarrassing as that is to say).

    I also had to work through the weekends usually to get my 40 hours in.

    So, in early August 2006, I crashed big time. Now I'm on leave. My ENT and neurologist think it's CFS due to my symptoms and the chronic Epstein Barr virus labs. I FINALLY will be seeing a rheumatologist this Friday and will be having an MRI tomorrow.

    By the looking at the disability scale, I can see that I was functioning at about 50% during the last year. Right now I'm probably a 30, and a month ago I was a 20 or less. So, I guess my best hope is to get back to my 50% like I was before the crash.

    MY QUESTION IS: How many of you are at 50% and working full time? My disability insurance covers me if I am unable to work "full time" at my job, which I obviously cannot do. DO I HAVE A JUSTIFIABLE CLAIM to be on disability if I manage to get back to 50%?

    I was thinking about seeing if they would let me work part-time, but then I'll lose the disability benefits. The more I look at it now, maybe I shouldn't feel guilty or ashamed to be on the disability plan. I paid for the insurance and that's what it's for -- someone who can no longer perform the duties of their full-time job.

    Any thoughts, opinions, ideas?

    Thanks in advance. I'll be back on the board this evening.

  2. lighthouselady

    lighthouselady New Member

    Bumping for TerryS
  3. GBHope

    GBHope New Member

    So sorry to hear of your struggles. I am going through a flare right now myself. I too tried to work from September 2001 to September of last year. I started off full-time and got sicker and sicker, went down to part-time, and that didn't help either. I just got worse and worse. I finally stopped working for a little while and a few months later had a hysterectomy, then tried to go back again, and fell hard with severe hyperthyroidism. I too was doing transcription from home because of my flexible schedule and ability to lie down as needed, but it still wasn't enough. Miss the work, but know my limitations. I wish you the best!

  4. charlenef

    charlenef New Member

    i dont have cfs i have cmp but when fibo kicked in it was all over i stuggled for about 4 more months. i dont think i would have been able to only i worked at home so i could take breaks. charlene
  5. Jeanne-in-Canada

    Jeanne-in-Canada New Member

  6. TerryS

    TerryS Member

    I need to chill out and wait to see what my diagnosis is and just see how things go from there. I just feel so guilty...and I anxious because I don't know what to expect!

    Thanks, again, to EVERYONE!

  7. meme11

    meme11 New Member

    Hi terry My name is Phyl and I am new here. I was a hairdresser since I was 16 for 26 years. I cut down to 3 days a week, still doing long hours. I then Just couldn't hardly get out of my car to get in the house. I was having pain all over and in my feet. Not knowing I had fibromyalgia and post polio syndrom. I, in 1993 had to have foot surgery tellin my customers i would be back in 6 weeks. I haven;t gotten back yet. * foot surgery's later and finding out I have fibro, cfs, and post polio sydrom, I had polio when I was 7 and now the nerve endings that were good are dying, and that is more pain, and weakness. I waited 3 yrs before I could finally get disability. Which now in our state it's easdy. My husband works with a guy that will go with you,m instead of hiring a lawyer and paying him out the yahoo. It was a scam here. The l;awyers and the system, Before your finally trip to get your decision you had to take a lawyer with you which did absolutely nothing, I did all the calling, I had all the paper work, and he just sat there while I explained what was wrong with me and he got all of my back pay. Now this guy does it all and goes with you for free sometimes. So I am on disability. Have you tried for it or you just can't live off of disability. I am fortunante to have my husbands income and insurance through ups. I wish there was something I could say or do to help you. I go to pain management for m lower back and the meds I get for that and my feet help the fibro. I couldn't get out of bed if I weren't on these pain meds. But, no one here in Ky takes care of just fibromyalgia. They say oh yes I know all about that, then that's where it stops. I've tried different things on my own, but, without help I can't seem to find the right healthy ways to control it except the pain management. Do you go to pain management? Well, I'll let you go, hope you can get some help. Take care Phyl
  8. Pianowoman

    Pianowoman New Member

    My CFS doctor says that no one should be working full time unless they have recovered to 80-90% for 6 months. This probably sounds idealistic to some but you will almost certainly relapse if you don't take the time to recover. If you have too many relapses, the chances of any kind of recovery significantly diminish.

  9. TerryS

    TerryS Member

    Phyl - No, I don't go to pain management. I actually don't have any diagnosis yet except for chronic epstein barr virus. My ENT and neurologist think I have CFS. The fatigue and weakness are my BIGGEST complaints. There is pain present intermittently but it's usually tolerable.

    My husband earns ample money to support us. HOWEVER, he's a workaholic and expects me to be the same. He will be very unhappy if I quit work and don't at least have a disability check, not to mention that he'll probably NEVER give me a dime to spend on myself!!! (WORLD'S BIGGEST TIGHTWAD!) I hope to be able to stay on short term disability until I'm well...I am seriously thinking about only working part time in the future...or maybe not at all. Right now, I feel horrible.

    Kathy - I like the way your CFS doc thinks. Makes sense to me. I'm going to write that down to remind myself. Hope my rheumy that I'm seeing tomorrow will be that supportive.

  10. georgie0826

    georgie0826 New Member

    I have fibro, depression and anxiety. I was working part time and had a major crash in Feb. 2006. I was in bed until April. I have applied for disability, not heard anything yet. When I have a few good days in a row I think, hey maybe I can work a little. Then I remember the reason I feel better is because I am not working. If I went back to work I think it would all start over again.
  11. TerryS

    TerryS Member

    That's so true! Sometimes (while I'm lying here on the sofa) I'll feel pretty well and think "hey, I could work!" Then I get up and throw a load of wash in and end of gasping for breath and falling back on the sofa!!!

    I'm in a fortunate position to say "There's more to life than a 40-hour/week job!" I just don't want to play any more!

  12. TerryS

    TerryS Member

    Well, I know I can't do anything by lie around for 8 hours a day!!! I have trouble sitting up for more than 30 minutes right now!

    I had an MRI done yesterday and was totally exhausted by the time I got home...but then I had to turn around two hours later and take my teenage daughter to the doc 'cause she was very ill. I suspected she had gotten mono...probably from me 'cause I have a current "reactivated" infection. Turns out, she does have mono!!! I have my suspicions that my other two children (both older) also have came down with it...we'll see. Maybe they won't get as ill from it.

    Needless to say, by the time I got back from HER doc visit, I was totally crashed. Today, I feel like I've had a major set back and am totally wiped out. I have my first rheumy appointment tomorrow, so I guess I'll just lie here on the sofa ALL DAY to conserve my energy!

    If I push myself hard enough, I think I might could do my job (which I do from my home - sitting and typing) for a couple of hours maybe twice a day. Problem is that they need a "full time" person to do all the transcription, plus they came a couple of weeks ago and took my computer to give to a temp who is working on my job right now. I don't know whether they'll be interested in my working part time (and drawing disability from our insurance plan) or not. Plus, they would have to agree to keep me officially as a full time employee so that I don't lose my benefits.

    I'm going to see what the rheumy thinks tomorrow. I'm keeping my fingers crossed for at least a preliminary diagnosis.
  13. fincher

    fincher Member

    Hi ~

    I've had CFIDS for 15 years now. I was off work for 5 months during the first year, which was the worst, then I went part time for about another year and a half. It think being able to do this was what saved me from getting worse and staying that way.

    After being sick for about two years and functioning okay part-time, my option was to either return to full-time, or share my job. I didn't want to get stuck with that, so I worked my way back up to full-time, where I've been ever since. I've been getting by with ups and downs, but this year has been only down. I'm able to continue working, but there's not much energy left for anything else. Of course, I do the things that are important to me anyway, so that's probably why I'm slowly getting worse.

    I believe by reading the scale that I'm now close to 50%. Maybe 60% on a good day (once a week or so). I don't believe I ever was at 80% for more than a few months at a time.

    I'm going to start at the FFC in Pittsburgh next week, so hopefully I can get back up there. Dropping below 50% isn't much of an option.

    Best wishes to all ~
  14. JLH

    JLH New Member

    I worked full-time for 30 years and took early retirement at age 48.

    I was working at about the 50% level during the last 10 years of work.

    I guess I really don't know what the 50 rating on the disability scale is .... but I consider that my health was at about 50% during my last 10 years. I had so many debilitating health issues during this time, and so many hospitalizations, that I was working at about half of what I normally would have been capable of.
  15. TerryS

    TerryS Member

    Well, let me start by saying that I have no idea what my CMV values were, and they haven't been checked since I had CMV in 2002. So, can't help you with that.

    My PCP hasn't really treated me with anything. He never thought that the Epstein Barr had anything to do with it; and maybe my symptoms actually didn't (see below), but my daughter did, coincidently, come down with mono two weeks ago! My PCP had a CT of the brain ran, an MRI of the brain, nuclear cardiac stress test, sent me to a neurologist, and I took myself to a rheumatologist. All the scans came back normal, as well as the stress test.

    What has happened since I first posted is that I finally got in to see the rheumy. He diagnosed me to definitely have FM. He also did some additional labs.

    Unfortunately, he called with news that my labs show primary biliary cirrhosis and/or autoimmune hepatitis. I am seeing a GI doc in the morning for consultation and possible liver biopsy.

    Apparently, both of these liver diseases can cause severe fatigue and also "bone" pain.

    I was feeling halfway decent the week I first posted this; however, last week I had three days straight that I could barely move off the sofa and my pain became excruciating.

    We'll have to see what the GI doc can do for me in terms of getting my energy back. From what I have read, there's nothing. If that's the case, I won't be going back to work at all.

    By the way, I had spoken to my employer last Monday. They are more than happy to give me any amount of hours I want and I would be able to stay covered on the disability plan to supplement the income; however, they were unsure as to how it would work as far as my being "full-time" status or "part-time". If they make me part-time, and if I ever came off disability, I would not have those benefits available any longer. I'm still waiting to hear back from them on their decision, but, like I said, it may end up being a moot point anyhow.

    I'll put a new post out tomorrow and let everyone know what the GI doc said.


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