CFS& FM and working 40 hours

Discussion in 'Fibromyalgia Main Forum' started by ourlife, Jan 28, 2009.

  1. ourlife

    ourlife New Member

    I have just been diagnosed with CFS/FM about 6 months ago and am still trying to hold down a 40+ hour job. How do you guys do it. I sit here at my desk and about fall asleep or dont have the energy to pick up the phone. I know my co-workers are tired of seeing me leave early. I can barely go and can't afford to quit. I need all the advice i can get on how you guys make it through the day.
  2. greatgran

    greatgran Member

    Guess you wanted to hear from those that are able to work but I am one that tried and finally had to give it up. Due to my age at least I think that was it , I didn't have any problems getting my disablity. Of course it took me a year or so.

    Do you have any sick leave or disability leave you can take ? I tried to work and I honestly feel if I hadn't pushed myself in the beginning I might have improved with this darn DD.

    I am so sorry you have it and do hope it isn't a bad case as we are all different.

    I pushed with trying to do and many family issues till I was so stressed
    my adrenals are shot. So if your body says rest , then try to work out some way you can. I know its so hard.

    Financially and Mentally the not working has caused a big impact on me
    for the worse. I miss my paycheck and my job...but I finally had to accept the fact I wasn't able to do and wish I had have done it sooner then maybe I wouldn't be as bad as I am now.

    My God BLess,
  3. jasminetee

    jasminetee Member

    I once worked as a teacher with CFS. It was pretty mild but I felt like you described a lot plus I caught lots of flus and strept throat all the time. I was able to work out then and that helped me the most.

    I was lucky that with my job I was able to take cat-naps on my desk after school then get up and work again. I used to work late into the night and get to school very close to the first bell. They even gave me an award for that-lol! I also worked a lot every weekend and holiday to make up for my inability to keep up during the week.

    I used to have to shop a lot for my job (3rd Grade) at teacher stores that were far away and I would konk out in my car for an hour or so in the parking lot before driving back and continuing to work.

    If I was doing really poorly I would go home and go to sleep shortly after school got out and then often go back in the evening and at night but i lived a few towns over so rarely did this. I always figured if I got a lot worse I would move near the school so I could do this more often. Instead I went from functioning like that to completely disabled after I sprained my back. The thing that saved me was getting private Disability Insurance when I was still able to work.

    I understand how you feel and what you're going through. It aint easy that's for sure.

    [This Message was Edited on 01/28/2009]
  4. Janalynn

    Janalynn New Member

    It's not easy, but some people have to - for as long as possible anyway.
    I am very fortunate that I have a 'somewhat' flexible job. Or it used to be anyway - we are so busy right now, that I went from working 3 days (4 hrs/day) a week to 5 days (6-7 hrs), but I can go in late in the morning and leave when I'm done, which actually isn't until close to 5.
    I also have another business where I'm the manager of a direct sales group. So there are times that I do not have the luxury of "work when I want'- sometimes things have to be done.

    When I saw my rheumy - he told me the people who do best are those who work a flexible part time job. He also recommended working as long as possible. I plan to do that.

    Right now, I have no choice anyway. My husband lost his job - so I'm it. Tons of pressure. I really don't know how I do it. I am exhausted. I work during the day, then very often have 3 hours of work to do in the evening. I often fall asleep while sitting at my laptop. On the weekends, I'm worthless. I literally can't move sometimes. I haven't done housework for months- my husband, bless him, has been doing almost all of it.

    It's weird, but in some strange way, there are some days that I think I feel a little better by working. It must get me moving or something. Hard to explain. Of course, 4 out of 5 mornings, I do not want to go, but feel okay once I get there. I am still in pain every day. (I take my heating pad with me)When I was home those other two days, I laid on the couch cause I had no energy. There must be something to that - the less you do, the less you feel like doing....sometimes that is.

    IF I had to punch a clock - different story, NO WAY could I do that. Flexibility is key for me. I know how fortunate I am to have the job I do.

    If your main objective is to get disability then maybe don't switch to part time, but otherwise I disagree - if you can afford it, I think working part time is the perfect balance - IF you can do it - some can not.

  5. wendysj

    wendysj New Member

    Hi Ourlife,

    I know it's hard for you... I've been there. When CFS hit me I was 23 and working full time at great job. It took 1 year for me to be diagnosed. During that time, I was out of Short-Term Disability and working from home. I had a pretty good boss who was flexible because I was able to do everything by computer. I tell you though, it was the toughest year of my life. It seems now that I look back on it that every day I felt my worst... Thank God I'm past that part of it. If you're still in that first year... It's going to be tough but you will make it.

    Since then I have found another job with a small office. I do as I need to... I always get my work done and work late if needed on the days I feel pretty good. Some days, I just can't make it past noon. Those days, I go home and take a nap.

    I take flexiril to help me sleep at night. (Taken at 8 PM to go to bed at 10 PM.) That really helped the the quality of my sleep. I take Lexapro 20 mgs to help with the overwhelming anxiety this dd can bring on during a flare. I also have hydrocodone for the pain on the bad days.

    I make sure to get on my elipticall every day even if its only for 10 minutes on the easy resistance... My doctor said that we have to keep moving, working, excercising, using our brains... Once we stop, the dd can take over. I'm 28 - I'm not going to let FM/CFS beat me. It's hard... but with the right people surrounding you (at work, home, friends, etc.), you can do it.

    I wish you the best, hang in there.
  6. astroherb

    astroherb New Member

    I understand what you are going through. Though I believe I have had FM most of my life, it really flared up about a year ago. It was to the point that I though I would need to quit work because of the extreme fatigue. I am single with no other source of support so that was scary. I am much better now and though many Saturdays are spent in bed, there are weeks when I am able to actually be out and about on Saturday and Sunday. I am also functioning quite well at work. I do need to be careful about cognitive problems but they are much less severe than previously.

    The one thing that helped the most was getting better sleep. My reheumatologist (at the time) said that the first thing was to improve the sleep so the body could cope and heal itself. I didn't particularly like that doctor, but he was so right! He prescribed Flexeril to relax my muscles at night and help me sleep. It was such a blessing! We are all different, so something else may work for you. But do, please, look into improving your sleep first.

    Next, a low carb diet helped tremendously because it kept systemic yeast infections from flourishing. It also helped to balance my blood sugar (hypoglycemia) and I no longer had the late afternoon crashes.

    After that look into many of the supplements talked about on this board. I especially like Alpha Lipoic Acid, grapeseed extract, CoQ10 for general energy and MSN, magnesium and malic acid for pain. Here again, everyone is different so check with your doctor and use what works for you.

    Have you had your thyroid and adrenals checked.

    Lastly, something has to give so you may have to give up your previous standards on how your house looks, etc. It is already two full time jobs to work and manage your disease. Be kind to yourself.

    Hope this helps. I will be silently cheering for you.

  7. mammabek

    mammabek New Member

    there have been many times since my dx that i thought i would have to quit as the docs tried every med under the sun, and all the supplements as well. now i take metformin for insulin resistance and yeast control miripex (am working my way up to the research levels gradually, currently taking.5 will end up at 4) everything else just didnt work and had way too many side effects. i also take lortab as needed for pain but the amounts needed are already reduced by half with the introduction of the miripex. i only clean house when i feel like it and i have learned to say no when needed and in return for the first time in 21 years i have a...70% normal life as long as i keep everything in balance. i would advise a discussion with your employer, with documentation to prevent any discrimination, and do your research on FMLA and reasonable accomodation. blessings