i'm afraid to tell people

Discussion in 'Fibromyalgia Main Forum' started by rachel432, Jan 16, 2006.

  1. rachel432

    rachel432 New Member

    hey all i need advise!
    i work as a nurse and i often here people i work with making fun of the diagnois of fibromyalgia and the people who have it. i was onle diagnosed a month and a half ago and the only person who seems to really seems to really understand what i'm going through is my husband. my arms and back hurt on a daily basis and there are times that i would just like to be able to say "i can't lift this right now it hurts to much" but after my own mother saying that i shouldn't need to take pain meds (she is very anti pain meds)and my brother thinking i'm just making this up i'm afraid to tell anyone else what my situation is. people i have counted on my whole life think i'm crazy. any ideas on how to gain the strength to tell people i need to tell i'm tired but i can't sleep, my body hurts to much right now to be lifting patients and i feel like i have no control over what is happening. i'm so afraid after these first reactions to even tell anyone how i feel, i feel like no one believes this is a real problem. the only people besides my husband i feel might be able to help are you all who i have learned so much from already. thanks.
    rachel
  2. jakeg

    jakeg New Member

    there is a post here somewhere thats called a letter to normals that may halp with the people that don't believe in this DD. I printed it and gave it to a few people that said oh its in your head not your body and it at least has stopped the comment that its in your head. I just hated when people said that, like your some kind of syco or something. The people that don't believe need to beinformed about this DD, it is the only way that they will understand that it is real and how it effects those that have it and their loved ones.

    Jake
  3. natrlvr2

    natrlvr2 New Member

    enlighten your co-workers(nurses?) about FM. I am shocked that nurses are so narrow minded and they make fun of it.
  4. smiffy79

    smiffy79 New Member

    i sorry your fellow collegues are like this and its worse that they are medical staff.
    i would contact one your fibro campaigners to see if there is some sort of course to attend that way you dont have to say anything and they get the kick up the bum to the path of understanding!
    here in the uk they are trialling a special fm nurse in a rhuematology department and if it works out ok then the plan is to roll the idea out across the country.
    so for that nurse to be a special fm/me nurse she must have attended a course to make her special.
  5. rockgor

    rockgor Well-Known Member

    One of the few nice things about getting old is I no longer care what other people think about me.

    I don't argue or explain any more. I just say, "Sorry. Can't do that."
  6. kgangel

    kgangel New Member

    Hi,

    I just want to say, I feel so bad. I feel horrible inside when I hear people say that no one understands. I agree with you, it does seem that way. I also know what it feels like to have everyone look at you in the doctors office like here is that crazy girl again.

    I don't understand it and maybe I never will. I just keep hoping and praying that a cure or something positive comes out about FM to prove we are not crazy. I don't understand either why some doctors are so compassionate about FM and try so hard to help, when others say it is nothing but a wastebasket diagnosis.

    I know we are not crazy , I know we are all in pain, some worse then others, but still we know about pain. Like you, my husband sees me everyday and he is the only one that really understands the kind of pain I go through, he sees at times the physical effects it has on me, like my hands turn bright red and get swollen when I have a bad flare, my feet get swollen and very cold or too hot and of course he sees the pain in my face daily. He just does not get it, why the medical profession can not help or most of all how they don't get how much pain we are in and that it is not in our heads.

    It must be very hard for you too, being a nurse, always there to help others then when it is you that needs help and understanding, suddenly you are crazy and it is all in your head.

    My family and friends try to understand, but I can tell they question it, also I don't have nearly as many friends as I used too, not that I had a lot of friends but I am down to about 3 that I can really count on any more, one of which has chronic illness as well, so understands.

    I can only say that I am so glad that your husband is understanding of it, I know that is a blessing for myself. All we can try to do is get the word out there, let people know we are not crazy and stand up for ourselves. Try not to be afraid to tell people, afterall, who really cares if they get it or not, if they don'tthey are probably not the kind of friend you want anyway.

    I wish you the best and I want you to know we are here for you

    Hugs,
    kgangel
  7. CanBrit

    CanBrit Member

    The past year and a half since I was diagnosed with FM has been a real eye opener. It's a shame that many people can't or won't take the time to understand FM, especially those close to us.

    I'm lucky in that my father, a retired physician, very strongly believes in FM (I actually think he has it). He's usually very anti pain control for chronic illnesses, but with me, he tells me to make sure I take my pain med at night. I only take a 10mg morphine with my sleeping pill. In a bad flare, I take more.

    My inlaws somehow think it's an excuse to get out of travelling down to see them (a six hour drive) which I just can't do. Thank God my husband is supportive. He has his own medical issues with chrohn's and arthritis. What a pair!

    At work, when people ask me what's wrong, I just say I have a muscle disorder. My boss has a friend who is unable to work because of FM so she understands the nature of this illness.

    My family Doctor provides me with medication but really doesn't believe FM is a condition. He thinks that eventually something is going to show up in one of my tests to explain everything! At least my rheumatologist is on side.

    If you can educate people, that's great. If they don't want to understand, well there's not much that can be done about it. If only people could walk in our shoes.

    All the best Rachel

    Eileen
  8. matthewson

    matthewson New Member

    I am surprised that the nurses you work with do not know anything about FMS! Auto-immune diseases seem to run rampant in medical personnel. We have 3 people in our lab who have FMS and we have others with Lupus and we just recently had two people with disorders similar to MS, can't think of the name right now. Anyway, no one that I work with has ever made fun of anyone here with FMS!

    I have to agree with the poster that said they just don't care what people think and it comes with age! I feel the same way! I try to educate people who have no knowledge of this DD, but will abruptly end the conversation if I get a hint of non-belief! I'm too old to have to put up with stupid people!

    Rachel, I have to tell you, you will get better! I was in horrible pain when first diagnosed and when I found this site, I read everything I could and tried a lot of different things. I finally came up with a combo of meds and supplements that keeps the pain down enough to still be able to work, although I do try to avoid lifting heavy objects which would be hard for you to do being a nurse.

    You have to develop a thick skin with these DD! I already had a pretty thick one, but having FMS just toughened me up that much more. Don't mess with me when I am in pain or I will bite your head off!

    I hope you have better days and just know that we understand and it WILL get better!

    Take care, Sally
  9. BabiCati

    BabiCati New Member

    both physical and emotional. Not being able to talk about it and then being told it does not exist is horrible. My mom keeps asking me what is wrong and I keep telling her FM but she says I am too young and it has been going on too long.

    My boss wants to know what is wrong with me. Since several drs have told me to get checked out for autoimmune disorders I have told her this but I am afraid of bringing up the fibromyalgia. Even if she understands, I feel like I will be labled as weak and unreliable, even though I am not. I work harder than anyone in this office.

    I wish a famous person would come out with their dx and maybe it would make a difference for the rest of us.

    Lourdes
  10. kbak

    kbak Member

    Hi Rachel,
    I think it's important to tell people, even if they don't understand. People will never understand this DD if we don't speak out. I would tell your co worker's that you've been Dx'd with fibro, that it is a legit disorder, one that you thought you'd never have. One that you don't want to have, and hope they never experience. That even Mayo's has a fibro clinic, so it's not nonsence.

    Printing out the "letter to normals" is helpful. That way you can just hand people a fact sheet. Not everyone is going to understand or be sympathetic. As annoying as that is, you have to develope a thick skin because you can't make everyone understand.

    I really hope that things get better for, and you get the understanding you so richly deserve.

    Take care,
    Kathe
  11. NyroFan

    NyroFan New Member

    rachel:
    I had my doctor write my diagnosis on a prescription pad.
    I had to use it twice since getting FM/CFS: it was for doctors or others who did not believe me. I know it sounds drastic, but when it is seen written by a doctor there is more credibility. It has worked for me.
    Hugs,
    NyroFan
  12. NyroFan

    NyroFan New Member

    rachel:
    I had my doctor write my diagnosis on a prescription pad.
    I had to use it twice since getting FM/CFS: it was for doctors or others who did not believe me. I know it sounds drastic, but when it is seen written by a doctor there is more credibility. It has worked for me.
    Hugs,
    NyroFan
  13. smiffy79

    smiffy79 New Member

    i use 'long term chronic pain disorder' it usually shuts ppl up :)
  14. russiankids3

    russiankids3 New Member

    and boy do I know where you are coming from!! I don't know where you are currently employed, but I told my fellow nurses several of my diagnoses and although they were sympathetic they cut me no slack! When I was still working in a childrens hospital and we were always short-handed, it was literally "every nurse for herself".

    I've also found that many of the nurses I worked with through the years lacked compassion and couldn't care less if I was having a bad day or needed help with lifting. They weren't even compassionate with their patients so.... what was I to expect?

    Anyway, I left hospital nursing and am working part-time as a pediatric home health nurse. So much easier on your body and a lot less stressful.

    Maybe you need to find a quieter, laid back kind of nursing job that doesn't do a number on your FM. Just a thought.

    Take care.
    Sue
  15. DLsGroovyMoM

    DLsGroovyMoM New Member

    Ugg…I get so ill when my posts disappear…

    Let me try this again

    I too am a nurse and have found that even those in the medical field are non believers…some of the worst in my opinion. I do not tell people I have FM…I only tell them the testable and measurable stuff (neuropathy, arthritis, metabolism problems). I have found that most people will even find some fault in those things.

    I was diagnosis in September but have suspected it for years. Because of all the heartache I had seen people go though I would never so much as utter the “F” word.

    As some of the others have said you can try the letter to normals…I personally have had no success with it and find that it has only made things worse for me. The people I have had read it think it’s a joke.

    Sorry that all of that is not such good news…but I’ve found very little good news in all of this.

    As for work…I was blessed to get the job I have. After having my son I really did not want to get back into nursing homes or psych work (not to mention I knew I couldn’t do it anymore), and I wanted something with flexibility. My saving grace was a Medical Temp service. They do everything from fill in prn at NH and Hosp. To home health which is what I do.

    I work 3rd shift/5days a week (it is still hard, 3rd shift will just about kill anyone) but it is so great otherwise that I am thrilled that I have this if I MUST work..uggg…the company is called Maxim Healthcare (there are others but I am drawing a blank on names)

    It works so well for me b/c I get no hassle if I need to be out for sickness/sick baby. I can take all holidays off (no pay but…). While at work I can basically do whatever I want…sit, stand, walk…play on the internet…which is what I do most of the nite. It might be something worth looking into…I also love it b/c I totally HATE for people to be watching over me and here everyone is asleep and I have free rain of their house.

    Sorry that you are having a hard time with this…is sucks butt…hehe

    Have a good and minimally painful day…hehe
    Hugs
    Amy
  16. rachel432

    rachel432 New Member

    i just wanted to thank all of you for being here, your support means so much to me! the reasons i hear from other nurses that fm isn't real is that they can't see it on an xray or cat scan. it frustrates me. i'm lucky in some ways that with my job i work the days i want and do mostly pm shifts so at least i can sleep in. i also realize that i am very lucky to have an understanding husband, but he knows me well enough that he can see it when i'm hurting. thank you all for your support and suggestions! i really don't know what i would have done if i hadn't of found this board. i'm suprised to see so many nurses here also. you all have made me feel like i'm not alone. thanks!
    rachel