Working with Fibro

Discussion in 'Fibromyalgia Main Forum' started by mjjcoach, Oct 2, 2006.

  1. mjjcoach

    mjjcoach New Member

    Hello everyone-
    I am new to the boards. I have spent quite a lot of time reading over messages the last couple of weeks. It appears to me that a good deal of the individuals on this board are unable to work - which surprised me.

    Can we get a conversation going amongst the individuals who are able to work. I would love to know your coping skills that keep you being able to work.

    I was diagnosed with FM about 5 years ago. I have been able to work, albeit I need to take days off when things get really bad. I never know when it will be a good day or a bad day. I ache from head to toe every day, some days more so than others. Everyone where I work knows I have FM and are very good about it.

    The biggest thing for me is the fatigue and some days I can barely make it home and crawl on the couch. However, after a short nap I can usually function the rest of the evening. Weekends are for recouping so I can work another 5 days. I don't do much around the house anymore - have a cleaning lady every other week.

    I would love to hear from others of you who are able to work and how you are handling it.

    Warmly - Mary Jane (MJ for short)
  2. fieldmouse

    fieldmouse New Member

    Iam sorry that I can't give you any support on this subject. I had to be out on med disibility for the past 6 months and finally quit my job a couple weeks ago...I just want to welcome you to the board and hope you get lots of good responses(which I know you will here)and find lots of good advice...Again..Welcome and hope to see you around..This is a great place.....Mick!!
  3. angellwolffe

    angellwolffe New Member

    Hi MJ and welcome to the board. I have had the symptoms of fm since i was a teen. I was in a nasty car accident at 4 which messed up just about every aspect of my life.

    I still work. In fact, I work 40+ hours at one job and 20 hours at a part time job.

    At my full time job I take many breaks, not long ones, just ones long enough to give me a little rest. I also sit outside, weather permitting, and meditate a little during lunch. I work at a job where i run two machines and I'm mostly running back and forth between, i can take breaks when i feel like it. I also try to sit down for a few minutes here and there. my boss has been a close friend for 7 years so he knows the situation. I take a multiple vitamin and a supervitamin with extra b6 and b12. and at lunch i slam a slimfast. this helps my energy levels. I also drink a lot of water, 3 to 5 quarts a night.

    At my parttime job, I am the boss so I can take breaks when i feel like. My cashiers know about my illness so they help out and cover on bad days.

    A friend of mine who is a pt says to be sure to not get dehydrated because dehydration will make us hurt more.

    I do light excersice when i can and try to do some yoga several times a week. we take a 2 to 4 mile hike once a week and i do light weights. Hubby watches this carefully.

    My hubby helps whenever he can most days. once in awhile he gets a bug. but he's a gem.

    My docs won't perscribe anything for pain so i use some homeopathic remedies which help a great deal. Other than that i only take nurontin for my peripheral nurapathy and acv to help lose weight and have an overall healthy feeling.

    Angellwolffe
  4. mjjcoach

    mjjcoach New Member

    Thanks for the "Welcome" to the board! MJ
  5. mjjcoach

    mjjcoach New Member

    angellwolffe,

    Thank you for sharing. Sounds like you are taking very good care of yourself to be able to work the number of hours that you do.

    I started exercising right after I found out I had FM and I believe it has really helped me. I mostly walk and use exercise tapes. I also purchased a rebounder and use that sometimes when I get home from work.... on days I am not crawling in the back door.

    I am an administrative secretary to two directors in a medical office. I am also on the board of directors of a national non-profit organization. I am VP of programs and have been in charge of our yearly national conference among other things. I also help keep our website up to date.

    I don't have much of a personal life any more. Weekends are usually for recouping. My husband is on the go, but I don't have the energy. I would like to find some activities I could do to get me more involved with people again. I like one-on-one or very small groups.

    Warmly - MJ
  6. Kayleen

    Kayleen New Member

    I work a full time job. I don't know how you work 2 jobs. By the time I get home at night I'm exhausted.

    I work for a radio station in sales...so I do a lot of running around. I think that's what keeps my body moving...I keep moving. I can go home if I need to..to take a little rest. Weekends I do a little house work then rest. Do a little more then rest.

    I was diagnosed about a year ago but have had FMS for about 5 years or more...my guess. I do worry that it might get worse and I won't be able to work. I'd go crazy at home all day. Too much of a people person I guess.

    Most days I just feel achy all over with little tender point pains here and there. But over do it and I ache like you know what. Then I go to the Alpha spa. That seems to take care of the horrible pain.

    Kayleen
  7. angellwolffe

    angellwolffe New Member

    that there are some days i have to call hubby to get help to get out of the car. I probly would never survive if we didn't have a hottub, which i use almost everyday (the best thing my sil never liked).

    angell

  8. tobelct

    tobelct Guest

    Welcome,
    I to work 40+ a week.
    And the couch and hotpads are what I look forward too while I watch my horse out the window.

    I don't get weekends off I get the middle of the week. I usually do as little as possible. For my feet and ankles hurt to much from beeing on them all the time. Im waiting for the end of this flare and hope it goes to a more convient part of my body.

    I know I mentally make check points only two more hours until break, lunch only two more days and then the next I get a day off or if I am lucky two.

    but I to believe that it is the moving that keeps me going I know how I feel at the end of the night getting up out of the chair were I do the deposit for the store and I can bearly walk across the store.

    I just keep setting goals of what I would like to achieve from month to month.

  9. mjjcoach

    mjjcoach New Member

  10. EllenComstock

    EllenComstock New Member

    I still work, but had to cut back to part-time several years ago. I work half-days (mornings) as a secretary at a small, private college. I also have three months off in the summer. So far half-days are working out pretty good for me. Two afternoons a week, I go to a swim therapy class right after work for an hour. I also walk inside (I have a treadmill and other exercise equipment in my basement) or outside if the weather is good. I believe the exercise is crucial to keeping my FMS from becoming worse. I also do stretching.

    I take a nap late afternoon for about an hour or so. My energy just drops and I have to do this or I wouldn't be able to get through the rest of the day.

    I still do most of the housework at home, but have had to change how I do it. Pacing myself and splitting up jobs works pretty good for me. I've also had to lower the amount of stress in my life as much as possible, including eliminating or at least limiting the amount of time spent with toxic people.

    Eating healthy, taking vitamins and drinking plenty of water throughout the day is important. I have read that dehydration can make pain and brain fog worse.

    After years of searching, I have finally found a great FMS doctor who has really helped me. I am sleeping better now, which definitely helps me to get up in the morning and get to work. He has prescribed stronger pain meds for me. I am not pain-free, but the worst pain is under control. I am also on medication for my Restless Legs Syndrome, which used to keep me awake a lot as well.

    What also helps is that my job is pretty layed-back most of the time. I work in one of the academic buildings on campus and most of the professors are great to work for. So liking my job really helps me to continue to do it, plus the great pay and the fact I still have my health insurance (a rarity for a part-time job).

    Well, sorry this is so long, but what I have to do every day to keep functioning and not get worse, does keep me busy every day, but until a cure is found, there is no choice.

    Again, welcome and I hope you enjoy this site as much as I have.

    Ellen
  11. mjjcoach

    mjjcoach New Member

    Prickles-

    Thank you so much for all your input. You have some very good tips.

    Thanks again - MJ :)
  12. mjjcoach

    mjjcoach New Member

    ellencomstock... thank you for the welcome to the boards.

    I find too that keeping myself moving helps. I know that if I stay home I will still have pain, and I would rather have something to take my mind off of it. However, fatigue does catch up with me on a regular basis and I just have to crash on the couch for awhile.

    Thanks for sharing what you do.

    MJ
  13. CanBrit

    CanBrit Member

    I was diagnosed with FM 2 1/2 years ago, then I was found to be hypothyroid and now they think that some of the fatigue and lymph node swelling I'm getting is probably CFS. Why not....good things always come in 3's. Kidding...

    Oops..forgot Restless Leg Syndrome.

    I work with software applications so I have a sit down job. I love the work so that helps motivate me to come in every day. I can get up and move around when I have to and use my heating pad frequently. I usually lose about 2 days a month though due to pain and fatigue.

    In my good periods I only take a pain med and sleeping pill at night. Most days I can block the pain but if the fatigue is bad, then the pain usually is as well. Sometimes I've burned myself badly at home (fog) and not really felt any pain either. Probably not a good sign.

    I would say that about 75% if the time I cope well and the other 25% I just feel sorry for myself!

    All the best.

    Eileen
    [This Message was Edited on 10/03/2006]
  14. Danielle

    Danielle New Member

    Hello,

    The first few years I became ill were the worst when I was working. I'm still working 9 years later. I switched jobs after the first year which helped a lot. It was a very stressful job. I think being happy and supported in your job makes working with fibro easier.

    It is still hard at times when I flare up. I take a small amount of pain medication to get me through some days. I think keeping active for me has been helpful.

    I know this condition is different for everyone. I thought for sure I would be bed ridden in the beginning. After time and after trying several medications I feel fairly stable. But I can still have some very bad days. Most days I manage ok.


    Danielle

  15. mjjcoach

    mjjcoach New Member

    Trish-

    I know what you mean about not having a choice about working. My husband is self-employed and business hasn't been good for quite awhile now. So I pay most of the bills. I could use a few extra days off - if I could just get the same pay! :)
  16. m5shelly

    m5shelly New Member

    I work two jobs... no time to think about the pain or get depressed. My docs help me out with pain meds, and muscle relaxers. The pain meds help during the day, and the muscle relaxers help out in the evening and to get sleep.

    I do not have labor jobs though... no way I could handle that. I am a test engineer. About 60% of my time is in the test lab, testing various products for reliability, failures, etc., and about 40% of my time is at a desk writing reports on the testing.

    On my evening job I am self-employed, tinting autos and trucks. That job I am just about to close down. It is getting tougher working on small two-doors and putting in the extra hours. I have a loyal customer base that's been seeing me for 17 years now that I have been in business, so it will be a hard decision to stop. Plus, it's nice to have that extra income to pay for medical bills, prescriptions, etc.

    Good luck, explain to your doc that you have to, and want to work.
  17. mjjcoach

    mjjcoach New Member

  18. pasogirl

    pasogirl New Member

    Hey ! I was truly looking for support on the Working Woman out there with FM/ TMJ and myofascial pain disorder - I have recently been diagnosed, I guess I should say confirmed diagnosis -- I have a career as a Sales Manager for a global company and have responsibility for North America reporting to a European division. My responsibilities include all sales for USA - extensive travel, demanding workload, quotas and forecasts, budgets and margins and everything else including the kitchen sink. I also have a family - with three young children- 10,8 and 2. My husband does great managing the house when I am gone - but I had noticed my stamina slipping, my mind becoming foggy, decreasing confidence and so much more -I had lost my edge - but not my drive nor my competiviness - but it was taking so much more out of me -- I had extensive TMJ surgery last year and now all downhill since then - the fatigue is incredible - so much for the 6am flights and 9pm return home flights - I am lucky to drag myself home some days - My mind wonders terribly - and I just am having such a hard time -
    I also am looking for ways to keep my career in tact and all else I love to do- I am determined this diagnosis will not become ME - and that I will manage it into remission - now someone needs to tell my body that story !
    I need some coping and support advice from high pressure corporate women that thrive off power, have crashed thru glass ceilings and walls and ready to fight this head on - I know - I've been told I have to "pace myself" and ditch the TYPE A personality -- I am in denial and need your help
    I know that exercise is good - had given up my 5:00 sessions at the gym - right now lucky to get myself into the shower - that's my exercise - and dragging my pity self around -- but doesn't seem to be the trick -
    SOS !! SOS !! SOS !!!
  19. mjjcoach

    mjjcoach New Member

  20. mjjcoach

    mjjcoach New Member