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    5 Things About My Fibromyalgia You Need to Know
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    Caprice_WebMD_Staff posted:
    You have Fibromyalgia but not everyone in your life understands what that means for you.

    What five things do you need others - friends, family, doctors, co-workers, acquaintances - to know about your Fibromyalgia?
    We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
    Reply
     
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    jrae922 responded:
    Great topic! I think I will make myself a sign. :)

    1. Sometimes I just need to go to bed
    2. I'm in pain so sometimes I'm not nice
    3. I would do more if I could
    4. Yes, I need all of these medications
    5. Knowing that you understand is all I need

    It's hard to come up with 5 things because they might not apply to everyone in my life but it's the best I could think of right now.
     
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    An_200017 responded:
    1) That FM has changed my life and effects many of the decisions that I make.

    That is in response to the "you need to live your life and go after the things you want." I, of course, agree with the spirit behind that statement, but in reality, there are things I do not believe I can pursue. I have had FM for most of my life and had to begin modifying my life in my early 20's. I'm still only 29 but 15 years of FM has made me confident that I cannot pack all my goals and aspirations in.

    2) My pain levels can change by the hour. I may have seemed well yesterday, but this morning I feel like a truck ran over me. I might feel fine this afternoon.

    3) I'm actually a very healthy person (I have to remind myself of this too). I eat well, exercise despite the pain, have low BP, good cholesterol, etc. Some days I may feel this way, but I am actually not fragile.

    Those are the only things I can think of. I think I have more issues with what I should tell myself than others!
     
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    glad2bhere65 responded:
    1. It is a chronic illness that may go into remission at times but there is no cure as of yet.
    2. Without my medications, the pain would be unbearable and I could not accomplish anything on a daily basis.
    3. I cannot make commitments like I used to before getting Fibro. When I'm in the middle of a flare, please understand that I can't focus as well because I'm in extreme pain.
    4. Don't try to fix me.
    5. Please accept my limitations and accept me for me..
     
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    xperky responded:
    Heck, I might reword the initial statement to say "hardly anyone in your life understands what that means for you!" I think there are many things I wish people would understand, but the top five for me are:

    - Just because I can do something quite physical one day doesn't mean I'm not sick. I'll usually pay a big price for being really active, and you might not see that.

    - When you ask how I'm doing, I'll usually say "fine, how are you?" but I'm probably not fine. I just don't want to come over as a chronic complainer, and I really am interested in how you are doing, rather than talk about myself. (I should come up with something witty to say in response to that question.)

    - I'm not anti-social. It's just difficult to be around lots of noise and activity some days. It wears me out. I love being around people when I feel good.

    - I'm not lazy! I'm as active as I possibly can be without getting severe pain or nausea. When that sets in I have to stop for a while.

    - I consider myself to be a positive person. The fact that I suffer from chronic pain is not because I'm negative or don't take care of myself, it's just a medical fact.

    What does everyone else feel? This is an interesting question to ponder.
    Life is wonderful when lived with love and compassion, Margaret
     
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    KDee77 replied to xperky's response:
    Wow, you nailed it! I feel the EXACT same way (only difference is I answer "Doing okay, how about you?" when asked how I am doing! ;)

    It is so nice to see questions like these that make us feel "normal" and to know we are not alone.

    Take care and wishing good days...

    KDee
     
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    1wareaglefan responded:
    All the responses nailed it for me! I couldn't add another thing, except maybe about the fibro fog. Unfortunately my fog is keeping me from coming up with a coherent statement about it right now!
     
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    Benchie responded:
    The five things I need others to know about my fibro are:

    1. I require your patience. I do not move, talk or think as quickly as I once had.
    2. Trust me. I am more frustrated than you about MY situation.
    3. This will not just go away.
    4. It keeps me awake at night; asleep during the day; without appetite; in pain 90% of the time; nauseous; with a headache, extremely tired; itching, burning, red eyes; extremely dry mouth; frequent urination; painful menstrual cramps; numbness and tingling in my hands and arms; extreme morning stiffness; TMJ; painful hands and feet.
    5. My life has been deeply affected by this.
     
    avatar
    mymyrt replied to Benchie's response:
    I have a couple of things to add.

    If you really don't want to hear how I feel when you call me, then don't call and/or don't ask.

    Don't tell everyone else that my depression is depressing you. Believe me, I'll be happy to change places with you for a day.

    DON'T TELL ME TO TAKE A TYLENOL OR THAT BEING IN PAIN MEANS ONE IS ALIVE!! SOME DAYS, I CAN SAY "IS THIS REALLY LIVING?"

    Don't count me out yet. I am not disposable because I can't make plans, but I do not want to stop anyone else from having a good time.

    Tell me you still love me despite the fact that the me is now a different me. I still love you!

    Joan
     
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    xperky replied to mymyrt's response:
    Joan,

    Your last line - about still loving me - hit home with me. I feel like I've lost a lot of self confidence, and for others to give unconditional love is so important.
    Life is wonderful when lived with love and compassion, Margaret
     
    avatar
    Booch007 responded:
    Great thread Caprice...

    I am with all of them. I have nothing to add. They are perfect reponses to the public and family.

    Maybe I would add: I AM TRYING MY BEST**. Nancy B
     
    avatar
    mymyrt replied to xperky's response:
    Dear xperky, your comments were right on also, and I'm there with the loss of self-confidence. It's funny, I've always loved Eeyore (sp:?), Poo's friend. He's always woe-is-me, but he is unapologetic for it, and I have always just wanted to hug him. And he always fits right in, and everyone loves him.

    Joan
     
    avatar
    MoinOK responded:
    My 5 things:
    1. I'm not crazy, lazy or a hypocondriac
    2. I want to do more, think straight and live a more full life especially in regards to time with my children
    3. This REALLY sucks: Theres little concrete information, "no cure" and you have to be your own doctor/nutritionist/advocate basically, which is hard when your memory is in fog mode.
    4. Its a little scary- This condition is so prevalent in the US. We happen to be a country where GMO's and other nearly unavoidable unnatural things are in our food supply, so I cant help but wonder if there is a connection (again hard to determine if excluding these things help when your in pain and have a hard time thinking straight).
    5. If you don't understand, just say so! I'll be happy to explain and point you into the direction of some litterature :-)
     
    avatar
    Caprice_WebMD_Staff responded:
    What great lists you all have come up with! What's interesting is how we can all relate and yet there are so many varied ideas here.

    Keep 'em comin'! :-)
    We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
     
    avatar
    sherrybeason1 responded:
    I need to find a Dr. that will have some compatcion . and help me with my Pain.I need my Family and Friends to try to undstand my Pain.It is so hard to live with this FM I was a Hiper person befor my 30 .now Iam 56 I dont no haw to dell with this I try to keep goging and I pay for it In Pain All the Time Ever one has said just whit would like to put in wourds.Thanks to you All this has Helped me to no Some people do Undsand


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