CFS People Question Will I ever work again?

Discussion in 'Fibromyalgia Main Forum' started by TerryS, Sep 11, 2006.

  1. TerryS

    TerryS Member

    Hi All - I got a "preliminary diagnosis" of CFS...but still awaiting formal diagnosis while we rule out everything else. (See my profile for other positive diagnoses.)

    This is week #4 of my being out of work and on medical leave. Some days are halfway decent (not a whole lot of pain/dizziness), other days are a nightmare. Last week was horrible - including my brain wouldn't work right (better this week)!

    Right now - If I have to, I can manage a 20-minute trip through the grocery store and back home, but then I'm on the sofa or bed for two or three hours recuperating. I've noticed that I feel better if I do tasks in small doses -- empty and load the dishwasher and then lay down for an hour or so, etc. Unless my head is spinning or my arms are hurting badly, I seem to do alright in a semi-reclined position and can manage to do a little research on the internet or this message board.

    I've also had "new" symptoms appear over the last couple of weeks...seemed like it was something new every day there for a while!!!

    I feel like I did when I was recovering from CMV or the rheumatic fever I had as a child. DOES THIS EVER GO AWAY? Reality is, I never fully recovered from CMV in 2002, and I suspect that's when this current thing started up.

    Prior to this current episode (which started beginning of August), I had been pretty much exhausted for the past year with increasing episodes of extreme fatigue, aches/pains in my extremities, and dizziness. I am blessed to work from home (sitting all day typing - flexible hours) and on most days would have to nap in the middle of the day. My work NEVER got completed during the week, and so I was having to work through the weekends as well to get my work done.

    There was no energy left to do anything else. No house cleaning, no cooking, no laundry. My 67-year-old mom came over every other week and cleaned the house and did my laundry.

    What can I expect as far as being able to work full-time (or part-time for that matter) again? I don't know what to expect...I don't know what to tell my employer to expect. They've been really good about this thing and have hired a temp to cover for me in the interim.

    Right now I'm on STD from my employer with 60% pay. I don't see any way I can go back full time, EVER. My last year is witness to that...I have to be able to shower and cook dinner every day...can't give my ENTIRE LIFE over to my company. It'd be nice if I had the energy to attend church once a week -- haven't been there but twice in the past year.

    If I approach my employer about part-time work, they'd probably give it to me 'cause they really like me...BUT then I'd lose my disability benefits forever (as those benefits are for full-time employees only)!!! Next time I had a bad episode like this, I'd be out of luck financially!

    Any personal stories you can share with me? I feel like a "whiney baby". I know a lot of you are still working, so should I just suck it up and get back to work??? Or do I have a legitimate claim to be out of work?

    You know, when I'm lying here on the sofa I feel pretty decent (minus the headaches, dizziness, and extremity pain). But when I get up to do something, I seem to have limited energy. I think that's why I feel guilty being on medical leave, because I feel alright a lot of times while I'm lying around...

    OPINIONS? SUGGESTIONS?

    Thanks,
    TerryS

  2. KMD90603

    KMD90603 New Member

    Unfortunately, there are no easy answers to your questions. Every body is different in how they react to this disease, so it's possible you may never be able to work full-time again. Or, you may find yourself slowly recovering to the point where you can work full-time. The best thing you can do is just wait and see. For now, your body is telling you that you need the rest, so it's good that you are out of work.

    The other thing is that some studies have shown that people who start treatment for CFS/ME early on in the course of the disease have a better outcome. Meaning, maybe you'll have a better chance of returning to a higher level of functioning.

    Again, everybody is different with this illness, so no one can tell you for sure if you'll be able to work full-time again or not. I can tell you from personal experience that I go back and forth. When I'm in the midst of a bad relapse, I can barely get off the couch. And there are other times that I'm superwoman and can cook, go to school, work, and take care of my family all at the same time.

    I hope this helps. Gentle hugs,
    Kim
  3. smiffy79

    smiffy79 New Member

    hi terry
    i'm afraid your post was too long for me to read, i'm sorry.

    you are not a whiney baby at all so you can get that out of your haed right now!

    it took me a long time to learn how to deal with the illness but this is how i did it.

    i started by looking on my illnesses as being a many headed beast ie i broke down all the symptoms and set about them one at a time.

    as you have already noticed pacing yourself is the way to go. believe me i have been at the stage your at and it aint pretty but always remember to make the most out of your situation otherwise you will drive yourself mad and be on prozac before your dr can even say depression!!

    you need a good dr but its give and take. i sat and studied and studied so i could make my own informed choices and my dr respected that and i was able to say i liked this but would like to bring the dose down or can i try this please.

    i am now on 50mg amitriptyline but built it up slow and everyone here will have a different dose thats right for them. the amitriptyline is for sleep and to make sure i stay asleep.

    i take 2mg tizanidine for the cramping and spasms

    and i can have upto 300mg aday if i want it but can spend 'at home days' with just 100mg taken in the morning so its left to me to decide what i take and when.

    please bear in mind i have ME(cfs) and fibromyalgia so the med list above is just right for me.

    you can bring yourself back to the land o9f the living but take it one day at a time.

    in 10 minutes time what will i be doing? getting ready to go and see a new client to teach her how to train her deaf dog.

    if i can turn things around anyone can it just takes time. i am doing something i love and not stuck in a dead end job which helps but i work for 2 dog rescue groups as a homechecker/foster carer and i get called out to stray dogs. i have 3 dogs of my own 2 of which are deaf (one in my profile) and when i have a few mins i sit down to get some more study done as in a few months time i will be assessed as a training instructor!!!

    you CAN pull through this just stay positive!!
    ps hello we havent met yet so welcome to the board lol smiffxxxx
  4. cherylsue

    cherylsue Member

    Hi,
    I've having my third relapse of CFS in 6 years. After the onset, I returned to work full time. It took me about 6 months, and then slowy recovered to 100% at 14 months. Enjoyed a 3 year remission. Then Bam, down again for another 9 months before resuming full time. Enjoyed an 11 month remission, and Bam, I'm down again.

    What I suggest is ProBoos sold here at Prohealth. 3 packets a day for at least 6 months. It will chase away any infections that will just make you sicker.

    Helps if you can find a doctor to treat you, but even then it's sketchy. Some meds don't agree with me. Good sleep meds are hard to find.

    It's waiting game. Pacing and good lifesyle choices help.

    Good luck.
    CherylSue
  5. FOYBOYFOY

    FOYBOYFOY New Member

    TERRY
    IVE BEEN ILL AND ON STATE DISABILITY(CAL) SINCE FEB, I HAVE MANY DX ONE BEING CFS & FM. I TOO OFTER WONDER IF ILL EVER RETURN TO WORK. NO WAY COULD I EVEN WORK PART TIME AT THIS POINT. I JUST THANK GOD FOR EACH SUNRISE AND SUNSET AND TAKE IT ONE DAY AT A TIME. I GOT VERY DEPRESSED AT THE BEGINING AND THEN I DECIDED THE ONLY WAY I WAS GOING TO SURVIVE IT NOT TO THINK TO FAR AHEAD. IM 6 MONTHS AWAY FROM FULL PENSION AND RETIREMENT, WE BOUGHT A RETIREMENT HOME IN AZ WHERE MY WIFE AND DAUGHTER WAIT FOR ME TO RETIRE, STILL LIVING IN CAL. SO I HAD SO MUCH TO THINK ABOUT SO I DECIDE NOT TO THINK TO FAR AHEAD. THAT SAVED ME. GOOD LUCK GOD BLESS FOY
  6. shanwill

    shanwill Member

    this was a hard blow when i had to give up my full time job - it was impossible.
    i now work about 10hrs a week and find this managable.

    i've had CFS for 3+yrs and am only 31 so have no idea if i will ever work FT again.

    i think you have to listen to your body and do small tasks and pace. ignoring it and pushing on only leads to more fatigue and a firmer grip in the diseases hand.

    i've had a hard time accepting how much rest my body needs and feel lazy and useless laying around half the day, but one good doc said , you're actually healing your body, not doing nothing. so that's how i look at it now (am trying too;)

    good luck - you're not alone.
  7. rockgor

    rockgor Well-Known Member

    I've had CFS for 26 years. Never had ups and downs or remissions. Just gradually got a little worse each year. I worked part-time the last 20 years.

    Retired at 65. The last couple years I only worked two hours a day, sometimes couldn't do that.

    So as you've already seen, the DD has different symptoms and takes a different course w/ many of us.

    Good luck.
  8. TerryS

    TerryS Member

    I guess I'm jumping the gun 'cause I can't even work part-time right now...just worried about losing my benefits if I go back part-time. I know my STD insurance company will allow you to work part-time and continue your benefits. I'm not sure exactly how that works, though.

    My hubby makes more than enough to support us, but he has always required me to work...he's so worried about saving for retirement. I have a son (mine) that just started college and my hubby is footing the bill for his dorm room. I send my son spending money each week. I also have my cell phone bill and one credit card to pay off.

    If I can't go back to work and/or lose my disability benefits, I don't know how my husband will react! I don't think he understands what I feel like...I'm sure I look well to him.

    Anyhow, thanks for listening to me!!! You are ALL wonderful, compassionate people!!!

    TerryS
  9. KelB

    KelB New Member

    Hi Terry. Wish I could give you any guarantees, but CFS has different effects on everyone.

    If it helps, I was off work completely for 5 months, then I worked part-time for a year, gradually building my hours and days up until I was back full-time. I've been full-time since the beginning of June and I'm doing OK.

    I'm not as good at my job as I used to be (can't think fast enough, can't multi-task and have even less short-term memory than before!). I have also had a couple of days where I was tipping into a crash and colleagues noticed and packed me off home to rest.

    However, I'm still standing. I feel like my recovery has stalled, but I've managed the very fine balancing act between work and CFS. All I have to do now is fit in some leisure activities!

    Don't ever feel guilty. You are truly ill and you need time out to gather yourself and rest. That's the big key for you now - while you have this time away from work, rest, rest and rest.
  10. Marta608

    Marta608 Member

    Wow, Terry, that's a big decision. I do know that remission is most possible in the first years if you take very good care of yourself. A local teacher literally went to bed for a year - now she's fine. Personally I would sharpen my pencil and find a way to do without your salary just in case. There is NO way that I would push myself to work at this point (as I did and regret it). Hindsight is 20/20.

    If you have a remission or recover you can work then. For now, REST.

    From a person who believed she didn't have a choice and has learned that there is almost always a choice,

    Marta
  11. TerryS

    TerryS Member

    Thanks for all your comments.

    I hope to get a formal diagnosis soon. I see a neurologist this Friday and a rheumatologist the following Friday (finally!). Once I have a diagnosis, I guess I'll feel more confidant to make a decision as to my employment and what I should do.

    If I do have CFS (or something equally menacing), I may (if my docs will cooperate) just try staying out on medical leave and try to get on LTD. My LTD will start on the 91st day! I hear some of the horror stories about LTD and trying to get on it, so that's kind of scary!

    I'll put up a post after I see the neuro and then after I see the rheumy and let y'all know what's going on.

    My abnormal labs so far:
    ANA - positive at 1:160, last year positive at 1:320
    Arthritis panel - positive
    Epstein Barr (chronic/reactivated) - positive
    Anti-ssDNA - positive
    Actin smooth muscle antibody - positive
    Vitamin D & B12 - very, very low

    That's all I know right now. I haven't seen my PCP yet to go over all the other labs he recently ordered. Hope to get copies on Friday while I'm at the neuro 'cause they're all in the same practice.

    Many, many thanks!
    TerryS