Pain managable fatigue is debilitating

Discussion in 'Fibromyalgia Main Forum' started by texangal81, Jun 21, 2008.

  1. texangal81

    texangal81 New Member

    I have pain every day but it is manageable. I take Ultram regularly (all day long, in fact)and I still hurt but I've hurt for so long I'm used to it. However, the fatigue is what debilitates and controls my life. On the days when I simply cannot get out of bed, I have plenty of "well-wishers" who tell me "get up and do something, you'll feel better" or "Sally's mom's best friend's, daughter's cousin's neighbor" has FM and SHE says YOU have to get up and do something whether you want to or not, you'll feel so much better". Gee, thanks for the advice, I WOULD get up if I COULD. Do they think I'm just lying in bed for the fun of it?

    I read about all of the drugs to manage the pain, but is there anything I can take or do to manage this fatigue so that I can make it to work a 5 full days each week? I haven't worked a full week in a long time. My boss is very understanding, especially since I have a diagnosis, but he said he contacted HR to see what we can do to 'accomodate' me and now I'm scared I'll lose this job too.

    Everyone at work sees me hobbling along and I jokingly tell them I'm going to start crawling soon, but I don't complain about the pain, I just do my job as best I can. Am I protected under the ADA? And exactly what is that protection? Do anyone have any good websites I can look into?

  2. findmind

    findmind New Member

    Have you tried the search box above?

    Try ADA by title; if no hits, try ADA by content.

    Try everything the work offers you for accomodations, and make sure it is all documented, plus your own record of how it does/does not help you.

    For instance: "My job gave me shortened hours, which helped my pain along with my meds for it; however, the overwhelming fatigue and cognitive problems prevented me from being productive and hindered my communications with others", etc.

    I highly suggest you get a copy of your job description and begin writing down how each and every symptom interferes or prevents you from performing each and every task.

    If you have to go on disability, this will be invaluable. Start now.

    Best of luck to you,
  3. homesheba

    homesheba New Member

    is also what is the worst for me.
    and always weary like i have just had surgery..
    . like you i also am used, (almost-) to 24/7 pain but the tiredness is the worst.
  4. CKater

    CKater New Member

    I think I know exactly what you mean. Most days my pain is relatively manageable, but the fatigue is brutal. I myself cannot take Ultram without becoming sleepy and because I was recently put on Effexor, I have been taken off this completely for pain. I am so exhausted it is hard to get through a day of work. I recently took a leave of absence and have to go back on July 7. I rarely sleep more than 4-5 hours a night, and am always tired. I cannot wait to get home and go lay down. I too, was always stubbling at work, and was getting "the look". I would literally lose seconds at work in mid afternoon where I would nod off at my computer. Now being home I do take frequent naps, which helps, but the next two weeks I have to force myself or retrain myself to stay up and get back into a routine, and I hope I can. The fatigue is definitely the most debiliating for me too. I'll be watching this post, hoping for some help too, so glad you posted this!
  5. lbailey

    lbailey New Member


    My doctor finally gave in after I was crying in his office about how I could live with the pain, but the fatigue was ruining my life. He prescribed a drug called Dexedrine. It is primarily used for Narcolepsy I believe. It helps me to not fall asleep at work anymore. Might be worth looking into for you. Best Wishes
  6. DoveL

    DoveL Member

    Dear Tex,

    same problem here...If I get the pain under control, then the fatigue takes over. If I don't have fatigue to bad, the pain is debilitating!

    I wish I had the answer for the fatigue. I was just talking to a friend of mine the other day..I just cannot understand that with all of the medicine and technology, they don't have a medicine to take the fatigue away. Esp. with all of the illness' that cause debilitating fatigue? Go figure.

    Anyway, I wish I could have been of more help on this topic. Just to let you know that you are not alone!

  7. nina_and_me

    nina_and_me New Member

    First, I'd like to say that I'm sorry you've been told by people who have no idea what they're talking about that you need to "get up and do something". I know it's hard, but please try to ignore those people and focus on people who understand.

    In response to your question about battling fatigue, I was able to do that for several years. It didn't help the pain (in fact, it made it worse), but I was able to stay awake and remain alert while I took adderrall, which is an amphetamine, primarily used to treat ADD or ADHD in children.

    From 2004-2007, the anxiety I was experiencing got progressively worse, and I had to stop the adderrall. In addition, my blood pressure rose to very unhealthy levels. We tried smaller doses, but the blood pressure could not be controlled. If I were still working, I would try another medication from that class of drugs, if my doctors would allow me to.

    When I could not take the adderrall, my performance at work declinend sharply, and my attendance went from bad to worse. The pain was also worsening, and I was on more meds to control that, which didn't help.

    I also have a number of mental health problems which exacerbate the fibro.

    As far as the law is concerned, I was on intermittent FMLA from 2005 through the summer of 2007, when I had to leave. The absences weren't "counted against me" - my boss couldn't say anything to me about them, but he could and did complain about the work that wasn't getting done because I was not there. When I returned to work after absences of just a day, my boss wouldn't speak to me. We worked in offices right next door to each other, and for several days after I was out, he wouldn't speak to me or look at me.

    I tried to do things that I thought would help the situation:
    1. My doctor ordered a workstation evaluation, and the PT who did it recommended a $700 chair, a foot rest, a wrist wrest, a document holder that attached to my pc, and exercises that I was supposed to do every hour for five minutes. My boss's boss would not sign off on the chair because he said it was too expensive, and we didn't have money in the budget for it. He told my boss that I should look for a chair in the $200-300 range, so I asked our PT if she had anything like that - no. She also said that it was the first time that she knew of that a worstation recommendation was not followed. I was told by a supervisor (not my supervisor) that if I needed something special, I should buy it myself. Two years later, I pushed through paperwork for every person in our office to have a $600 chair (evaluations of the bosses had just come out, and people in our area were demanding better chairs.)

    2. Since it was often difficult for me to drive, I asked if I could work from home, maybe once or twice a week or for a few hours in the evening. I offered to supply my own computer and pay for Internet, and all other equipment necessary to work from home. I proposed this to my boss, he said he'd think about it, and a few weeks later, told me that there were other employees in the deparmemt who would have like to work from home, and granting my request would amount to "special treatment".

    3. I asked for a flexible work schedule - coming in early in the morning and leaving earlier in the afternoon, working either four ten-hour day or four 9-hour days with a half day during the week. If I had closed my door, no one ever would have known I was working odd hours. Again, the answer was no because it was special treatment.

    I had a bad experience, particularly with my last boss - two of the others were more understanding. I wish now that I had documented every single conversation, printed every e-mail, and forced my boss to get really specific when he turned my requests for help down. I would encourage you or anyone who takes steps to get help on the job from FMLA and the ADA to document, document, and document. And make sure those papers are AT HOME and that you have copies.

    I wish you luck, and I hope the fatigue eases up.