Ran into many people that said they had it

Discussion in 'Fibromyalgia Main Forum' started by roseylisa, Dec 31, 2005.

  1. roseylisa

    roseylisa New Member

    When asked if I work when meeting new people Ive had to tell them I had to quit working due to fibro and arthritis many have said oh I have that in my back! or my sister in law has it and still works. I think many drs are telling them they have it when its actually a back problem or something else, makes me mad because when I am flared up theirs not a place on me you can touch that doesnt feel bruised, I was talking to one lady that said her dr mentioned she might have it and it was just back pain, I told her about feeling achy like the flu even on a good day and she said oh just in my back, doesn't sound like fibro to me!!!
  2. lenasvn

    lenasvn New Member

    they would know about general terms, like "flare" TRP's and the like. A good way to "test" them if they really do! Ask them what RA meds they are prescribed, what they think about this and that med, and if they did x-rays, MRI's, etc! Pretend to be curious and interested. If they have none of these, or just "talk", they probably will feel a little stupid. LOL! I donno, but I would do that,,,
  3. gidgetsmom

    gidgetsmom New Member

    I still work so I only run into that when I have to take the day off. A few questions for them and most back off rather rapidly 'cause the don't know 'cause they don't have. I would gladly trade them a few minutes in our shoes!!
  4. lenasvn

    lenasvn New Member

    Hmm, sounds odd, heels and drinking,,,LOL! We are often beat down by alcohol. I doubt the diagnosis too. Sometimes if you haven't been pregnant and are in your early 20's you might still recover rapidly, but still,,
  5. laura81655

    laura81655 New Member

    My Chiropractor told me he has people come to see him quite often and say they have FM. And many times after the exam he will tell them" No, you have a muscle spasm." Then he says to me "YOU have Fibromyalgia....

  6. dononagin

    dononagin New Member

    I have CFS.. I have Fibro..

    I work..

    It is difficult.. I hurt everyday.. Right now My lymph nodes look like marbles sticking out of my neck.

    There are different degrees to this disease. Some people can't work.. I couldn't the first year. Some people can.. but that doesn't mean it is not a struggle.

    I am not feeling good today and I'm writing this from work.
    I certainly would never judge anyone who doesn't work.. I wish to God I could give up the fight and stop working.

    I know there are many people who "fake" this illness.. God only knows why anyone would want to... But please don't judge those of us who are struggling everyday and still working.

    If I stop, I lose my insurance. I make the majority of the income in my home.. I worry everyday that I will lose my job. Mostly over fibro fog..

    I hope I'm not being overly sensitive but lets remember that there are differing degrees to this just as there is in all diseases..

    I know ladies with Lupus who are on disability.. I know ladies with Lupus who hold full time professional jobs as I do..

    Hugs to all..
  7. Lolalee

    Lolalee New Member

    ...who truly do have FMS/CFIDS. I know someone who works as a Receptionist in a Doctor's office and she has overheard, more than once, the doctor comment to nurse that when he cannot figure out what a patient has, he tells them they have FMS. Doctors like this one shouldn't be in the medical profession.

    Another time, my daughter-in-law was told that she had FMS by a doctor and she wasn't even in pain. She figured out on her own that she doesn't have it.

  8. lenasvn

    lenasvn New Member

    I applaud people who keep up a job despite the pain, fatigue and all that comes with. I couldn't do it, and I almost get jealous at people like you, sorry to say. You are right, there are varying degrees of this illness. I do believe Roseylisa was talking about people who are ignorant and don't know what they are saying, just sort of insinuate that you're a hypocondriac, etc. I may be wrong, but that's what I thought she meant.
  9. kch64

    kch64 New Member

    Many of us have to keep working. We don't have a choice.

    I have two other girlfriends that are on my same floor at work that have been diagnosed, and they keep working too.

    One of them is in very bad shape, but she's found a good M.D. that does integrative medicine, and she's doing somewhat better.

    She could retire if she wanted because she is full retirement eligible, not just from disability. But she wants to keep going for a few more years. Her Doc has told her to retire, but she says its a personal goal of hers to keep working for a bit longer. Shes a great support.

    I will say hang in there to all whether you can work or not. We can't judge one another on whether we work or not. All of us have the same illness, but to varying degrees. I've noticed many of the FMers on here have a lot of other diseases too. That can really make it hard for them to work.

    We need to support each other as best as we can.

  10. desertstars

    desertstars New Member

    I have the same fear of losing my job as well. Like yourself I have no choice but to work. i know I will eventually hit a wall but in the mean time I have to do this for myself and my family.
    I do wish I had an alternative though.I am useless anymore and have the mental aptitude of a jelly fish lately. I am exhausted and in pain all the time.
    Hang in there kiddo LOL
    I wish I could say it will get better. Maybe we should buy more lottery tickets.
  11. Musica

    Musica New Member

    I have RA and probably at least early fibro. I have found that it is incredible how many people are ignorant about both conditions. With RA, they say "Oh, I have arthritis in my small finger" (RA is a systemic disease, not a little arthritis). There is fatigue with both, and of course people say "You canceled lunch because you're a little tired?" What else? Oh yeah. "Get over it", "if you would just exercise", "all you have to do is (take vitamins/lose weight yada yada)".

    I must admit, though, I was pretty ignorant about these things, and probably would sound pretty ignorant about a lot of conditions, but I hope I wouldn't say stupid things that would belittle a diagnosis.
  12. chopindog

    chopindog New Member

    Like chocolat said, there are many different degrees to this illness. It frustrates me when people say " I have to keep working, I have no choice." Let me explain why.

    In hind sight I think I had a more mild form of CFS, FMS for a couple of years before I became completely disabled do to it. I continued to work, but would sleep constantly whenever I could! Also I was a RN and could ask for on call and sometimes I would get it, then I could stay home and sleep. Although I was behind on bills. some days I just could not work.

    But then came the big bang! Viral meningitis then mono 3 months later. I was hospitalized with the viral meningitis Sept of 2004 and have been unable to work since then! I lost my home, my car , my friends, my boyfriend, my job, every peice of furniture in my house, (because I had no where to put it.) I had to move from my home town to go to Utah and live with Dad at 27 years old.

    I worked very hard to become a nurse, and I loved being a nurse. My life was ripped out from under me!!! I don't count what has happened to my life a choice! I had no choice!! I could not, and still can not work. I can't hardly even leave my house a majority of the time. Taking a shower feels like running a marathon. If I do push myself into a flare, I can't get out of bed for days. I have tremors, migraines, poor short term memory, horrible pain, nausea and vomiting, vertigo,orthostatic intollerance, heart problems, and I am sure I am missing some, do to this disease. And I have these things everyday, Just some days are a little better than others.

    Now I am 28 years old. I live with my Dad. I have no husband or children, and am afraid I never will have either because first of all what man wants to marry a chronicly Ill person, and secondly I know I could never take care of a child, or even bear a pregnancy at this point of my illness.

    In short, I have lost everything!!!! Not only my possesions, but my dreams, my future, my self. I did not have a choice, If I did i certainly wouldn't be where I am now!

    So when people say " I have to work, I have no choice." This makes me feel like they are saying. " I am stronger than you, you need to get off your lazy but and start working, I can do it, so you can too."

    So everyone please remember that there are many different degrees to this illness. And respect that for most of us who do not work, can not work!! Joy
  13. lovethesun

    lovethesun New Member

    It didn't get worse for years.When it did I worked until I could no longer function.For a year after.. going out of the house for 10 minutes was too much for me.Now I can do a little more with my walker and cane.When I was diagnosed I didn't know any of the terms.I think that you can really spot a faker though.They have what I call the the" one up" disease. Linda
    [This Message was Edited on 12/31/2005]
  14. lurkernomore

    lurkernomore New Member

    I do hope I have not spelled your name incorrectly. If so, please forgive me. I just wanted to tell you that your post really touched my heart and I truly admire your tenacity and fighting through the pain, all for your insurance and family. God bless you woman, you are really a hero in my eyes! I wish you as many good days as you deserve and you surely deserve a lot!
  15. roseylisa

    roseylisa New Member

    Lenasvn Thankyou for understanding what I really meant, I'm not always good at explaining myself!
  16. dononagin

    dononagin New Member

    Ok.. I had a full day in bed and I'm not feeling quite so sensitive today! lol!

    Lenasvn.. Thank you..

    Kendra.. I understand what you mean.. maybe we do have a choice but it would include losing our income and insurance so we plug along the best that we can.. for as long as we can..

    Desert Star.. I had to laugh! "apptitude of a Jelly fish"
    Fits me to a T !!

    Chocolate..Chopindog..I do understand what you mean.. In hindsight I had some symptoms for years, but I had Mono over 10 years ago and that is what brought all of it to a head.. I was on complete bedrest for over a year. I couldn't even walk to the mailbox.. Taking a shower everyday wasn't even a possibility. So I do understand.

    I spent 10 years back and forth with specialists some who didn't believe the cfs diagnosis and still thought there was something more they were missing before I found my current rhumie who added fibro to the mix.

    I still think they may be missing something because I haven't found anyone else here that gets the lesions that I do. I have an appt. for a second opinion with a dermie in March. It's taken 6 months for an appt.

    It was quite a battle for me to go back to the working world and it is a struggle for me everyday. But I do remember not having the energy to lift my head from the pillow and I still hurt... everyday.

    There were times before I was diagnosed that I seriously thought I had cancer or something.. I truly felt like I was going to die.

    Oh and Chocolate.. I had to laugh at what you were saying about high heels and drinks! I have been in orthotics for about 6 years now.. I'm the only one in my office who doesn't wear sexy shoes.. and hmmmm.. I think most of us who are legitamate can't drink much with the meds we take!! I know it's off limits with Cymabalta..

    Lurkernomore.. I'm no more a hero than any of us fighting this everyday. We all suffer and do the best that we can. We all have bad days and worse days and few better days.. Thank you though sweetie!!

    Anyways.. didn't mean to offend anyone.. like I said I get a bit defensive and sensitive when it comes to working. I certainly won't judge anyone who can't as I'm only hanging on by a thread and don't know how much longer I can do this.

    But please don't think that everyone who can work is somehow faking this disease. There are many of us who still struggle everyday to work.. there are many of us who struggle even worse staying home..

    No matter how bad we have it there is always someone in worse shape, so I guess we need to be grateful for the things that we can do.. be it at work or at home..

    Again, I hope I didn't offend anyone..

    Love and hugs to all..
  17. dononagin

    dononagin New Member

    Gosh .. I sure don't feel like anybody's hero today!! lol! But thank you..
    I know I can't keep this up forever.. I'm already trying to figure out what I'm going to do if I have to give it up. I already had to change jobs because I couldn't keep up the pace.
    The hospitality business is wonderful. I love being a part of so many special events... but it is wearing. It's just hard when you are feeling crummy to always be "on". And the guests expect it.

    I do think it is important to push ourselves.. though I often put myself into a flare as the result. I'm still paying for the New Year's Gala.. If I didn't push myself I think it would be really easy just to go to bed and never get up again..

    The mornings are the hardest.. just getting out of bed. And there are times that I feel like I just hit a wall and run out of steam. But I do think too it helps to have something else to focus on besides the pain. It helps to get you out of yourself.

    I saw in your profile you belong to the Red Hat Ladies!! I LOVE THEM!!! We have a group that comes in for lunch now and then and they are SOO much fun! What a wonderful group of ladies!

    Also, the Arts and Crafts.. I used to be so into crafts.. My mother was an artist. Now I don't have much energy left to do it.. but I love anything to do with creativity! I feel like I'm slacking with my teen.. I taught my step daughters and my oldest to paint, to macrame, to sew, floral design.. you name it.. Now with my 15 year old.. It needs a button?? Throw it out..lol!

    Pacing ourselves, you are right is key. I've learned to try and get important tasks out of the way when I'm feeling more alert...

    I've learned to be a master at taking notes.. complete notes so I remember what they are when I get to them..I've learned to schedule days off after big events as I know I'm going to crash and burn.

    But still, I know I can't give my job what I could have 10 years ago. It's hard for us type A's to realize our limitations.. and even harder to accept them.

    Now.. for the sexy shoes.. gosh! my orthotics are so big I have to buy mens shoes half the time.. In fact my doctor changed the dress code around here. We used to have to wear dresses for major events. My doctor sent me a note saying I couldn't wear dress shoes. So now.. all the lady managers where pants suits.. seldom a dress to be seen..

    Ok.. I'm SUPPOSED to be working.. and I'm not.. so I better get some work done before I get myself fired for being on line too much!! lol!

    Thank you so much Chocolate..

    Hugs and love to ya..
  18. Bet2

    Bet2 New Member

    I have good days and bad days but I always know that this DD can rear it's ugly head anytime.

    Sometimes it's just, WHAM! I have been fortunate that I can still work. I don't know what I would do if I couldn't.

    I don't even date any more because I never know when I am going to have a bad day. It does get lonesome sometimes.

    But I know there are others that are much worse than I am. I do have a good accunpuncturist. I don't go to regular doctors anymore. All they want to do is give you drugs, drugs, drugs.

    Anyway, just thought I would throw in my 2cents :).