Help.Couldn't work today-

Discussion in 'Fibromyalgia Main Forum' started by DayByDazey, Jul 23, 2010.

  1. DayByDazey

    DayByDazey New Member

    I'm newly diagnosed. Did OK Mon Tues Wed. Thurs afternoon I started feeling the life drain out of me. This morning I get up & totally drained. I didn't even care that I wasn't at work, my boss is out, my backup person is out & I didn't freakin care. I didn't care to care. What is this stuff? I can't believe this fog-I guess that's what it is. I sit here just existing, a blank stare kind of thing. Do your eyelids twitch? Mine twitch like crazy when a crash comes on. I new to crashes so anything you can share there would help too. I'm at a point I may lose everything I've got. Diagnosed 2 wks ago after bone scan, blood work. OA, RA, Fibro & chronic Epstein Barr virus. Is it the virus or Fibro. Didn't have any pain, just crawling muscles, stiff, twitching. On Mobic, Voltaren, Flexeril, Gabapentin, Plaquenil, Imipramine, Clonazapam, Tylenol Arthritis, Type II diabetic. Help w/what happened to me this morning. Was working M, T, W, & Thurs too much & then I crashed? It's 10:30 PM now & ringing in ears, don't feel like I know where I am, Face & front of scalp feel funny. I'm so weak.
  2. DayByDazey

    DayByDazey New Member

    I'm a Type A personality with one of the top positions at work. Thus, fast paced, can't get anything done fast enough, 9-10 projects simultaneously, constant decision making, depended on to "git er done" high stress position. All educaton in this one area since '73. If I quit work & try to get on disability, unfortunately, I lose everything. The envelope, marbles do make sense. I can feel my energy drain. I swear I can feel it just drain hour by hour. I just can't make myself quit, lose my house & car & beg my mother to let me move in with her. I'm basically trying to ride the fence but the fence is giving way. Ya know, I look at people differently now. I see someone walking slowly or having trouble getting in & out of a car & I wonder what is affecting them. The pharmacy folks have all of a sudden are giving me tips, from my no makeup, slouchy clothes appearance along with the new meds, they were use to seeing me looking professional. I don't care now how I look when I have to get out & I'm in screaming pain. I brush my hair & am presentable just don't care that I'm not putting up a front in front of my pain any longer. When a life change in an instant. Thanks so much. Hope to hear more from you! C
  3. u&iraok

    u&iraok New Member

    You're in a dfficult position. Is there any way you can work with your boss(es) to make some changes? With a job like that you'll end up crashing anyway and then you'll be forced to make some changes so you might as well try now. I know it's a bad time to change jobs but with your responsibility and experience maybe you can find something else. I asked to go to 4 days and they gave it to me! What a lifesaver that is--every Wednesday off so a break in the middle of the week. Took a pay cut but only 1/5 so it's doable.

    My husband is Type A and while he doesn't have CFS or FM he has some health issues and I've had to work with him to change his thinking. They say a lot of people with CFS are Type A and it probably contributed to the CFS. It's only in your best interests to try and change that.

    My husband is also the person that everyone relies on and he ends up doing more than his share. Is that true of you? He's had to pull back from that some and explain to people that he has to take care of himself. Learn to say 'no', as they say.

    My job is not so demanding and I've been able to pace myself. Sometimes I have to pretend I'm reading something so I can space out and rest for a few minutes. I also lay down at lunch and sometimes take a nap.

    (Good info, aussiewoman, thanks. I've been able to find my energy envelope and mostly stay in the zone and it really works. My biggest challenge is that people don't understand and think I'm shirking duties and being selfish so sometimes I have to do things that require more energy than I have but then I take from another area to keep that balance.)
  4. Tizz

    Tizz New Member

    That was a really good summary of info on ME/CFS and I agree it applies to fibro as well.


  5. AuntTammie

    AuntTammie New Member

    Welcome to the boards, & sorry that you have received such a "fun" diagnosis

    Aussiewoman gave some great advice....I just want to mention two things is to reiterate her advice re slowing down & finding an envelope. I totally, totally understand being type A and wanting to go, go, go (I was running marathons, working out twice a day, working, going to school full time, going to church, spending time with family & friends, and just generally having a very busy, active life before I got sick, & I had always pushed through everything else that happened in my life before)....and I understand hating the idea of slowing down....thinking you can push through this.....& I also really understand the financial issues of not working

    however, I found out the hard way that pushing through really does not work & if I had known what I do now when I first got sick and had actually listened to that advice, I probably would not be nearly as sick as I am this point, 6 yrs in, I am barely managing to take care of myself and am spending far more time in bed than out & it is because my body simply had enough & now will not let me do more no matter how much I may want to

    (with CFS, & probably FM, the mitochondria in our cells do not work rt - they are like the batteries for each cell - in normal people they "recharge" and do so quickly; in people with CFS, they either do not "recharge" at all, or they do so very slowly, so it is literally possible to be running on "dead batteries" and the cells will work about as well as anything else with a dead battery will.....if you stop before you are completely drained, though - in other words, keep inside of your energy envelope - then the cell's "batteries" can "recharge" more easily and they also won't get to the point where they are completely dead.......this is one aspect of CFS that is very different from other illnesses - it's why we have Post Exertional Malaise - the crashing that you are experiencing sounds like PEM - normally PEM is associated with CFS, but a lot of the times when someone gets a chronic Epstein bar diagnosis, it is really CFS.....and there is also a lot of overlap with CFS and FM)

    anyway, sadly many of us, for various reasons, tried to push through and also found out the hard way that it doesn't work, and that has led to us being much sicker than we likely would have if we had slowed down

    as to the financial part, if you have worked long enough, and can prove that you are disabled by these illnesses, you should be eligible for SSDI (SS disability insurance) does NOT pay well, but it is better than nothing

    the second point I wanted to make is that the suggestion of Ritalin is helpful for some, but many find that it winds up making them push harder and then crash harder (& in the long run is a bad idea).....and it can cause twitching (& other issues) so if you are already experiencing twitching, it may make it worse (& that effect can be permanent).....I don't want to totally discourage you from trying it, but I want you to be aware of these issues if you do decide to do so
  6. Svette_Palme

    Svette_Palme New Member

    Thanks for coming to our forum.

    Sorry to hear about your twitching, painfull muscles.

    The "weakness" is something that just comes on for no good reason. Don't beat yourself up about it, as in wondering if you are just not trying hard enough. The fatigue is real, and you just have to take it easy when it hits.

    Today I had planned to go for a bike ride, but I felt so weak I could barely wash the dishes. It is a beautifull day and I wasted it due to the fatigue [see how easy it is to "blame" yourself?].

    Good luck.
  7. kat0465

    kat0465 New Member

    i know it's hard to do, but you will have to learn your limits, and stop before you make yourself sicker.
    like most of us your a type A personality. so was i, i could multi Task with the best of them. I always want to do everyting myself.

    I too worked sick :( i Pushed and Pushed, and now im so sick i can't do much and don't know if i'll ever be better( unless they find a cure) and then i dont know if i've done damage that can't be reversed.

    i have a feeling i hurt my heart trying to Push thru the sickness, I have had issues with my heart since i was little, but now it's getting critical I'm afraid. i too have chronic EBV, and that will surely mess with your heart and other things.

    be good to yourself, you have alot on your plate!!!Besides this DD. it's hard, and it sucks!! But you will have to slow down.

  8. Janalynn

    Janalynn New Member

    Boy do I understand!
    Life sure can change in an instant! Even though I progressed over the years, I definitely got worse suddenly, then once diagnosed, it seemed like my life came crashing down. I was the model employee, hard working, dedicated, loyal etc. I still try to be, but I struggle like you wouldn't believe.
    I almost went on disability through work at the end of April and my boss worked out something for me at the last hour. (literally three days before) I HATED calling in sick and only did three days in 6 years. Thankfully I did have some flexibility and could work from home some days. If I didn't, there was NO WAY I could have continued working.
    My of my Dr.'s Fibro patients can't work. When I asked him about disability he told me that. I guess he sees most like me- the ones who suffer greatly.

    One thing you do learn, because you have to is to make some adjustments. I remember seeing a pain specialist three years ago and one of the first things she said was "I bet you stick close to home". Um yeah. I literally go to work and that's it. Oh, I do keep my hair appt every nine weeks. I have to buy my son a new shirt for his senior pics and I'm already wondering how I'm going to get out and do that.

    Part of me feels normal inside - like my mind. It's weird and hard to explain. I refuse to think of my future as 'this way' forever. I still want to look nice when I go to the pharmacy which is rare (my husband usually goes). I always want to look nice, but in reality I don't except for when I go to work.

    I "crash" for no reason. I have Fibro, so my crashing is horrible pain, weakness and fatigue. I wake at 3 am for 5 days in a row and try to work during the day. I sleep most of the weekend. I hate that. Thankfully I have an incredibly supportive family. I still feel guilty and that is my worst enemy.

    I've had to learn to just go with the flow. Whatever my body says, I have to go with it. If it says rest, than I have to rest. Instead of looking at it as something that is betraying me, I have to coddle it and take care of it - who else will?

    STRESS is a definite NO NO. You have to stay as far away from that as possible. It has a direct effect on your body. I've witnessed it first hand.

    You're not alone, so I hope that gives you some comfort.
  9. Tizz

    Tizz New Member

    I appreciate you sharing your story like that. It is so helpful, to know that others have gone through what we are going through.

    Because of serious balance problems, I had to give up working years ago - but I'm glad that hasn't been necessary for you.

    I have the same reaction to stress that you described. It's like it almost instantly triggers a flare-up...

  10. keke466

    keke466 New Member

    I too was a typr A personality. Worked since I was 16,took care of myself basically,helped raise my younger siblings and some of their kids,worked 2 jobs some of the time to do it. Owned my own daycare business for 10yrs. Worked in nursing for 8yrs before that then when I closed the daycare went back to nursing so have been in that for a total of 22yrs. I loved working and keeping up with everything.

    Man when this hit it really hit. When I turned 40 is when I was DX with FM and have just gotten worse. I finally gave in to working PT 3yrs ago and now all I can do is 2 days at a time. I work 2 on and 3 off and sometimes it's all I can do to do those 2. Sometimes I'm unable to leave my house for my 3 days off. I work at a small rural hospital now and I don't even have to do much work most of the time. Sometimes we have 0 pts and other times 2,3,4,5. We do have Er's but not that often,I work at night. We are able to watch tv and movies,read, play cards,sew,etc,anything to keep us awake as long as we take care of our pts,which we do. Just sitting and not doing much will wear me out. I hate living like this. I'm single and struggle all the time which just puts more stress on us.