I CANT STAND IT

Discussion in 'Fibromyalgia Main Forum' started by Suncatcher, Aug 20, 2002.

  1. Suncatcher

    Suncatcher New Member

    I am really tired of this. Stayed home from work sick. Very bad pain in my hip and down my leg. I get really hot when I am so sick. I have had this for 35 years and I feel I can't take it anymore. I am so tired of feeling bad. My whole life has been colored by this DD. I really don't understand what makes me so sick no matter what I read. What is causing this tiredness and pain?????? I am so sick of it. I have to work. I have no choice. The people at work think it is terrible I am off and that is only no more than 2 days a month if that. I hate being judged like I am a slacker when I am not at all. Only if they knew the days I go to work feeling like hell. I feel worn out tonight like I don't have anymore strength to put up with this. I want to lay down in bed and cover my head with my comforter. Sickening.
  2. Suncatcher

    Suncatcher New Member

    I am really tired of this. Stayed home from work sick. Very bad pain in my hip and down my leg. I get really hot when I am so sick. I have had this for 35 years and I feel I can't take it anymore. I am so tired of feeling bad. My whole life has been colored by this DD. I really don't understand what makes me so sick no matter what I read. What is causing this tiredness and pain?????? I am so sick of it. I have to work. I have no choice. The people at work think it is terrible I am off and that is only no more than 2 days a month if that. I hate being judged like I am a slacker when I am not at all. Only if they knew the days I go to work feeling like hell. I feel worn out tonight like I don't have anymore strength to put up with this. I want to lay down in bed and cover my head with my comforter. Sickening.
  3. Shirl

    Shirl New Member

    I am so sorry to hear you are in so much pain, and have to work too. I have had Fibro myself for over 20 years, I can relate to that, but not having to go to a job. I worked at home, I had a child care center for ten years.

    It is sad that we can't just take a pill and feel better! I sure wish that was the case for all of us.

    I was down for three days with pain this pass weekend, but I can just stay in bed till it decides to pass, tonight I went out to eat, and do some shopping, in the middle of the store, I got so tired, I could have just left the things in the cart and went home! All of a sudden I was tired!

    Hopefully someday one of the genius doctors will find what causes this and what to do for it.

    I sure hope you will feel better tomorrow, my heart goes out to you having to go to work. It takes me so long to wake up in the morning, that I had to quit going to church. I just couldn't function enought to dress and then go sit for an hour and a half in one place!

    You take care, and I will say a prayer for you, if you want me too.

    Shalom, Shirl
  4. GoDaleJr

    GoDaleJr New Member

    I know how you feel. I get so frustrated with the way I am sometimes I just want to scream. I used to sleep a lot. It was the only way I wouldn't feel the pain and it would pass the time away. But that was being reactive and not proactive.
    You say your whole life has been "colored by this DD" and I understand that, but you can't let this DD control your life.
    I know most of us feel this way but we can't define ourselves by this disability. I won't let it.
    And yes, there are times when I want to give in to all the pain and suffering, and at times I have. I would break down and cry for hours feeling so hopeless and helpless and terminal.
    I could do a lot of talking here, but I am not.
    Don't you just wish someone would invent a shot we could give ourselves whenever we felt bad that would just boost our immune system and give us energy?? AND take away the pain?? YES.
    PLease don't stress yourself about what your co-workers think of you. If they can't understand, or don't want to, that is their problem. YOU need to take care of YOU.
    I'm sending you positive thoughts...
    ~Gina
  5. Suncatcher

    Suncatcher New Member

    Thanks for the kind words. I really appreciate it.
  6. majic

    majic New Member

    i know where you are coming from. i get this feeling also. i'm the only one in my office so when i'm out it is worse on me. my boss did not understand at first. it has taken a year of me telling him and showing him things that i go thru. for him to get a grip. what really helped me was that his girlfriends aunt has fibro. she is in the bed more than she is out. my boss would tell her about me and she told him how lucky he was for me to be here every day. that i had to feel like hell. so then i had to let him know what i do to keep my self going. the key is for us to do it for our selves. as long as i keep telling me that i don't care what the others think. i'm the one going thru this and i can't make them understand what i'm going thru. i don't understand sometimes what i'm going thru. put yourself first don't get mad at the people you work with turn that negative energy in to some good energy and do something for you.in the boat with you. majic
  7. tired42long

    tired42long New Member

    Poor health is poor health...do you think they would feel this way about your missing work if you had, say cancer, MS, or any other "respectable" disease? (sorry that was sorta smug). You sound like you may be your worst enemy regarding the lost work. Be nice to YOU!!!After all, I looked on your background and it looks like it's YOUR BIRTHDAY!!!!!!!!YEAH. Looks like your family is near you. Have them over to celebrate...let your daughter know you need a pickmeup! CELEBRATE YOU!!!!
  8. Suncatcher

    Suncatcher New Member

    Thank you for the kind words. Yes, my kids are taking me out to dinner for my 57 birthday. Another year older.
  9. Sindy-Uk

    Sindy-Uk New Member

    I just wanted to wish you a happy birthday......I am really sorry that you are having to go through this pain. I can understand how you must be feeling and my thoughts are with you. Please take care of your self.

    Love and hugs

    satin
  10. RedEye

    RedEye New Member

    I don't have FM but have CFS and once a month like a charm I have a bout...no one at work understands or wants to for that matter (I work 40+ hours a week)
    It is so hard to keep a good attitutde, just know you aren't alone and I hope you feel better. Hang in there!
  11. fibrowhat

    fibrowhat New Member

    I CAN RELATE TO YOUR STORY.
    I FEEL BAD FOR YOU.
    I WORK 10 HR SHIFT'S BUT HAVE CUT MY WORK DAYS DOWN TO (3)DAY'S NOW.I JUST CANNOT DO IT,ANYMORE..
    SINCE I AM ON MY FEET FOR MOST OF THE 10HR'S CUZ I WORK IN THE MEDICAL FIELD(ENDO TECH)WE CAN'T JUST DROP OUR PT'S AND GO HOME.
    I ASSIST DR'S DURING PROCEDURES/I LOVE MY JOB AND THE PEOPLE I WORK WITH.BUT THOSE (((((((LONG)))))))HOUR'S MAKE ME CRY AT THE END OF THE DAY..

    THANK GOODNESS MY BOY'S ARE IN THERE TEENS NOW TO TAKE CARE OF THEMSELVES NOW,CUZ I CAN BARELY TAKE CARE OF ME NOW....
    WHEN I DONT GET MY SLEEP I AM IN BAD SHAPE FOR THE DAY WITH THIS FMS DD WEAR'S YOU DOWN..

    MY WORST ENEMY WITH THIS FMS IS MY PERIOD THE WEEK BEFROE AND A WEEK AFTER JUST KILL'S ME AND PUT'S ME AT MY LOWEST POINT OF ALL WITH THIS DD.
    MY LEG'S AND FEET SWELL
    THE PAIN IS 9 ALL THE WAY THRU THESE DAY'S
    NOTHING,I MEAN NOTHING TOUCHES THAT PAIN,EVEN HAD A DEMEROL SHOT ONCE AND IT DID NOT PAHASE THIS PAIN.
    LIKE YOU I JUST WANT TO STAY IN BED UNTIL IT ALL PASSES..

    I'M TIRED OF WORKING IT HURT'S IT'S HARD/BUT LIKE YOU I -HAVE- TO -WORK!!!!I CANT EVEN APPLY FOR SSI BECAUSE I COULD NOT GO WITHOUT A PAYCHECK THAT LONG,WAITING AND WAITING GOING THRU ALL THE REDTAPE,AND DENIAL'S,I'D BE OUT ON THE STREET.....THEY MAKE IT SO HARD FOR YOU TO APPLY AND YOU GO BROKE WAITING AND THATS IF YOU GET IT AT ALL...

    WELL FOR A NEWBIE I SURE WROTE A BOOK:(
    I WISH THEY HAD FORUM'S FOR THOSE THAT ((HAVE)) TO WORK WITH THIS DD MAYBE THEY WOULD HAVE SOME COPING SKILL'S FOR US TO SURVIVE THE PAIN AND WORKING THRU IT WITHOUT WANTING TO DIE AND LOOKING LIKE A SLACKER TO OUR CO-WORKER'S....
    THANKS FOR LETTING ME VENT:(
  12. PaulMark

    PaulMark New Member

    sun catch: I relate except i had to resign 2 yrs. ago as a small town city mananager her in KY. I have severe CFS, i've talked about some of symptoms with my immune TH2 system fire ants sandpaper flu like constant in bed l7/24 low G. horm. cheney is dr. have developed more fatigue and the fms type pain in last yr. I stay so frustrated, I feel like cussing a blue streak the mestinon i have to deal with side effets abd. cramping and been to bathroom 7 times already today, side effects, if weren't so sick wouldn't be so bad i don't think I know you have to feel the frustration with you symtpoms differnet yet same, isn't it like l catch 22 after another, i don't know how much longer i cant put up with the cramping and bowel movements looking at my journal its worse on sicker days but been on this drug since 6/20 it is the side effects per my druggist

    but what do I do?? i just at heck ddon't know i got of fthe drug for 2 days and was in so much body muscular pain in add. to all else i just laid in bed and cried and begged for help,

    listened to sermon on prayers last nite from says keep on pray and knocking at that door so i do and i do

    I just dont' know what to doand I plead and plead for a break, cfs is just l catch 22 after another i talk to others on sapfrog and cfs/fms board they deal with them too, it just gets me down too
    hope your cfs fms battles are better i truly do care, god bless paulstory@iolky.com
  13. IntuneJune

    IntuneJune New Member

    Happy Birthday, Suncatcher

    Hey, we are both 57!! Working is such an ISSUE. At work, I rarely feel free to mention I am having a bad day (though my coworkers may know anyway). Since I have had this for over 20 years, they really don't want to hear it even though I seldom complain. A little empathy would go a long way. That's all, just a little empathy--sometime.

    Hope you are feeling better! Fondly, June
  14. TheGlassButterfly

    TheGlassButterfly New Member

    This is my first visit to the boards and yours was the first post I have read - and this is my first post. You and I have been around the block more than a time or two, for I also have had FMS for well over 35 years. Long before there was a name for this syndrome - and it's a syndrome, not a disease, remember, and we are not "diseased" - More like dis-eased!

    I feel for you, knowing all too well the times you just want to give up; thinking it is more than you can handle. I've had that "hip-down-leg" pain like you describe and no one can know how bad it is unless you have felt it yourself! It is truly horrid!

    It's a rotten deal that we with FMS have been given; and for those of us with FMS to have CFIDS also, which I "contracted" about 4 years ago. But would you like to hear (briefly!) the story that added the worst insult of all? 8 years, 7 months, and 21 days ago, I discovered breast cancer - following a full physical exam just 8 days earlier and being pronounced "Excellent!" by a physician.

    Briefly: Mastectomy; biopsy showed cancer in 6 of the 13 lymph nodes examined (it had already spread), chemo so aggressive that not only did I lose my hair - as others always fear, - I also had no body hair, no eyebrows, no eyelashes - and my fingernails even came off! After the intense chemo, the radiation that followed daily for 7 solid weeks took every inch of skin off my chest until it was totally one huge raw and broken blister. Yetch!

    That one year, I had a total of 5 surgeries, the last one being December 27th! Boy, did I ever get in on the Major Medical - everything was "free" after the first six months!!

    And all the while, the FMS was present while I struggled at times to even take steps. One huge flare came during the weeks of radiation when my right wrist suddenly felt like it was broken and hurt constantly for six weeks! (I tend to have flares settle in one location for weeks, months, or years at a time with sudden onset and -thankfully!- sudden departure.)

    But you know what? The next year when I went for my first-year-following-cancer-exam with my dear oncologist, that was when I learned that no one had expected me to survive that first year! Gosh darn, nobody TOLD me I was supposed to be dead!!

    In the years to follow, every single person in my "chemo class" left this earth, one by one. No one is left from that group except me. All my friends are dead. Many much younger than I am; many leaving young children. It's been so very, very sad.

    I somehow beat the odds then and I'm still working at beating them now after over eight years! I don't use the word "cured", for I feel that is tempting "fate" far too much!

    Especially since two and a half years ago I had to have a tumor next to the spine in my neck removed, a tumor that was caused by the radiation therapy for the breast cancer! They can keep right on forming forevermore from the radiation. But that is another story in itself!

    Now this is not a "Pity Party" for me; not "me worse than you"; we are all equal in trying to survive FMS. We did get a rotten deal when "whatever" happened that caused it to start - but we ARE still here; we are all survivors of one of the most baffling syndromes in existence today. And we have to KEEP ON surviving! There WILL be a cure; there will!

    I DO feel like "hanging it up" lots of times on really bad days (there's more to the story but not to elaborate on it), so I really DO know how you feel. What I find amazing about you is that you CAN work! And DO! That is an accomplishment in itself not to miss any more than you do! Pat yourself on the back for me!

    I don't know you; you don't know me... But look at our names: You are Suncatcher and I am TheGlassButterfly, a name I chose long ago because I worked with glass and still feel that like that Butterfly, I am always emerging and someday will be free to fly...

    You must have chosen such a bright and cheerful name as "Suncatcher" as your own name because you have hopes and dreams also. Hold on, hang in there, know that there are so many people who are hurting, people who don't deserve to hurt - neither do you deserve it.

    I told my own story for just one reason: to show that you CAN survive, even when the odds are against you. The day will come when help will come for all of us. It really WILL! Just keep on hanging in there with the rest of us!!

    And keep catching those Sunbeams...
  15. Sunny2z

    Sunny2z New Member

    HI
    I am new to this board too. The first post I read was Suncatcher's as it seemed to refect how I feel. I work and if I am sick and can't I almost hate to go back the next day. Not so much by what anyone says..it mostly the attitudes. There seems to be an attitude that if I took better care of myself I would not be sick. My boss has told me so in different words.
    Then the next post I noticed was butterfly's. Here a person who feels just like we do, only she has been given death sentences and yet she bounces back time and time again. What courage. What strength. Certainly an amazing post to say the least.
    Both of these posts seemed to touch me. One because there are others out there struggling just like, the other because they are others out there who although struggling, they are overcoming. I guess there is enough hope around for all of us.
    I have to tell you what I do. Its the only thing that works for me. I just live one day at a time, like an alcoholic, only I have nothing to give up to feel better. I just have to take care of this barrel full of responsibilities for this day only. Tomorrow I cannot comprehend. I cannot make serious plans for anything beyond today. Sure I get a schedule at work and I look at it each day and go from there but beyond that....
    Hugs to all,
    Sunny2z
  16. SharonR

    SharonR New Member

    If in this crazy world, you are surviving, then it must be for a reason, look deeply for that reason, there are no accidents, and if you are here, punching it out on the key board, then you are not finished with your lives.
    There is strength in adversity, and you just need to come out swinging. Do not give up!!!! We are here for a reason
    My grandma used to say to us when we came home from school with a problem, "did anyone die?", we would say "no", and she would say, "well, then you have tomorrow to straighten it out!" I am not making light of your situation, I am just reminding you of something you already know. I know how tough this is, dig deeper.
    Love(and I have never finished a post with this)
    SharonR