CFS, short-term disability and questions

Discussion in 'Fibromyalgia Main Forum' started by aquabugs, Aug 21, 2005.

  1. aquabugs

    aquabugs New Member

    Hi

    I talked to my rheumy Friday about short-term disability due to this horrible fatigue. I drive 50 miles each way and am supposed to work 40 hours a week (of course!) Since the beginning of July, I have been missing more than 50% of my work time each week. Actually, this month has been worse. The last two weeks, I only worked about 1.5 days each week. The fatigue is knocking me out of action for days after only one day of work. I told the doctor I am very worried about my job as my FMLA leave will run out in the next two weeks. Unless, I get better fast, I cannot count on being able to work. It's just not physically possible.

    The doc wants me to just "keep on going." I asked if he thought perhaps if I took a short term leave for several weeks that I might have a chance of resting up and getting some energy back so I CAN work. He said, "No. There's no doubt you could get short term disability, but most people who take off for short term disability are never able to go back to work." He said the best thing for me to do is to keep on like I am doing and don't stop working.

    I pretty much thought that was rather a ridiculous thing for him to suggest, as I am just about ready to fall out from exhaustion on most days. One day of regular activity last week put me in bed for three days straight and off work for a solid week. I asked him how am I supposed to function when I barely have the energy to get out of bed many days of the week. He said, 'Just keep on doing what you are doing."

    I am very curious what you all have to say about this. I am not looking to stop working...I am looking for a little relief so that maybe I can feel better and able to work. Has anyone here been able to go back to work after short-term disability? Or is it really all over if I take of time to rest? Am I dreaming to think time off might help me? I am thinking my doc is not too up to speed on CFS...I dunno.

    Thanks so much
    Sylvia
  2. Pianowoman

    Pianowoman New Member

    Hi Sylvia

    You are not dreaming!! It is clear that your Doctor really needs some education about CFS. One of the first rules is to pace yourself and that does not mean driving 100 miles a day and working 40 hrs. a week. That's ridiculous!!

    If you are that exhausted, you need time off, right now. If and when you feel ready to go back to work, you might need to consider part-time.

    Here's hoping you can find an answer and get yourself feeling better.

    Kathy.

  3. CFIDSNicole

    CFIDSNicole New Member

    I don't know what to tell you except my experience. When I came down with CFIDS, I was a 24 yr. old grad student who was teaching English 101, tutoring in the writing center, and taking two grad classes.

    I somehow made it through that last year of grad school, but was in very very bad shape when the year ended. At the end of the school year, I normally would have gotten a parttime job for the summer and gone back to grad school in the fall to write and defend my thesis and teach a couple classes.

    When summer came, I was in such horrible shape from the endless hours and endless stress and endless work that my husband and I decided that I should take the summer off to rest up. I decided I would not go back to teaching because I honestly felt like it was killing me, so we decided that come Fall, I would find a full-time job, and I would take some time off from grad school (my brain was not functioning well enough for me to write a thesis).

    I rested during the summer. Come Fall, I started applying for jobs and going on interviews, but I was drastically and quickly getting sicker and sicker. Within one month, I was basically bedbound (still no diagnosis); I was homebound basically for 2 months.

    needless to say, I never went back to work. I managed to get lucky and the Unviersity Relations office got in a jam and they hired me to write part-time from home. I started that in November, and I worked a lot of hours on that in the beginning, but it was part-time and from home and basically on my terms.

    This past April, I started having more and more problems writing, meeting deadlines, etc., because my CFIDS started coming on strong again. It has progressively gotten worse--I worked 5 hours in July and no hours yet this month. On Friday, I officially quit. I had to.

    Sometimes I wonder if I had "soldiered" through if i could have somehow kept going, but I doubt it. I was in absolute miserable shape when I finished my grad classes. My point is that since quitting, for a few months' rest, I have been unable to return to work.

    I dont' know what you do for a living, but is there a possbility of working from home? That might help you be able to work longer, but I have bottomed out and am no longer able to do that even.

    Just an experience. No longer how much I "rest," my energy does not replenish, and I do not find myself able to do more or to regain any of what I have lost.

    Take care,
    Nicole
  4. aquabugs

    aquabugs New Member

    Thanks Kathy and Nicole

    I really appreciate your help. I've made several accomodations in my job over the last couple of years to try to keep working with this condition. I started working 4 - 10 hr days a week to save a day of the driving, but that didn't help noticably. I am a fresh water biologist and I gave up the field work that I love last December to take a mostly desk job :-( because, sadly, I could no longer handle the work. Now I do a few inspections of facilities and mostly work on the computer. Even that is exhausting... I work for the state and unfortunately a part-time position is not possible.

    I have an appointment on Wednesday with the Diagnostic Clinic of Houston, for sort of a second opinion. I doubt they will come up with anything different. After reading up on CFS, I can see the obvious symptoms in myself...particularly the fatigue that hits so hard the day after the activity. I have been dealing with that one for quite a while and could not for the life of me figure out why I'd be hit so hard a day or so AFTER the work. Now I know.

    I'm going for that appointment and will be making some sort of decision on the disabilty after that. If I wait very much longer, there will be no decision to make...I will either fall out from total exhaustion or I will be told I am no longer employed. Wow...all that education down the drain!!

    Take care and thanks again.
    Sylvia
  5. NifferA

    NifferA New Member

    I live in the Houston area also. I see Dr. Patricia Salvato and I have never found a doctor who is more understanding of CFS/FM. She knows all about disability and doesn't question her patients ability to work. She does extensive lab work and has treatment protocols that help eliminate toxins and improve fatigue. I would give her a call if I were you and get in as soon as possible. I had heard of her, but went to other doctors first. In my opinion she is the best in the area.
  6. aquabugs

    aquabugs New Member

    Thanks for the advice. I do have Dr Salvato on my insurance list of providers and was considering her as my next choice as I had read she was an expert in the field. I do think I will try to get a referral to her. A friend at work whose wife has CFIDS saw her and liked her very much. However; she didn't got back over there due to the distance. If she is good though, I'd rather make the trip to Houston (2 hrs) than sit here in doc's offices for hours for no help.

    Have a great day and thanks again.
    Sylvia