New here 30 years old and feel worst then if i was 110

Discussion in 'Fibromyalgia Main Forum' started by EmberFae, Jan 23, 2007.

  1. EmberFae

    EmberFae New Member

    My sister who is a nurse said I should join a support group
    for my F.M.S. It probably will help talking to others who are as fustrated as I am. So HELLO, I'm Ember, I'm 30 and and have whatch my F.M.S. get worse over 8 years. Dianosted about 4-5 years ago.
    I have 3 children. but only one living with me.The others live with Daddy a few streets away..because of F.M.S. pain and such I gave him custody.
    For years I listen to.."why are you always saying you have all these aches and pains" "Why does everything bother you"Why are you so tired all the time" "it's all in your head" I'm sure you all have heard these to.

    What gets me is the doctors!! Any of em. you tell them how you feel..and they test & test & test And then shrug there shoulders. Finally a Doctor added up all my dr visits over the years..for all sort of things (now I know they all were F.M.S. realated) and tested more, X-rayed everything.And said "you have Fibromyalgia. Go to OP therapy for 6 weeks, take these pills." I thought "Oh ok, so I do Therapy, take this medicine, then I'll be healthy again" WRONG!!!

    No-body told me what Fibromyaglia was. It wasn't till recently when with friends I was talking about the pain,being tired etc..when my one friend piped up and said "sounds like you have Fibromyaglia?" I replied I use to..that goes away right. Well obviously mine has not because I feel worse then ever!
    For about 2 months straight now..I've been in pain daily.
    I had a break yesterday I felt ok.Just a few ankle/knee/back/neck stuff.Not bad pain..just noticeable.

    I believe I've figured out the Depression part. NO-ONE understands. That Depresses the heck out of me.
    Family doesn't get it.(I'm from a long line of "Buck up And take it") Heck my mother is 67 and MOVES refrigerators BY HERSELF!! I can't even pour milk from a Full gallon jug. She wakes up at 5 a.m. ready to go, I sleep till 8 a.m. and I'm so stiff I can barely move for about 1 to 2 hours after I'm up.
    Doctors don't get it..or only know what the taught the last time they went to a conferance. I know more then MY doctor does about F.M.S.

    Friends don't get it. They can phsyicaly act their age. I'm 30 and feel like 110.

    My boyfriend tries to understand.He has bad back and leg pain due to a car accident.But he doesn't understand the good days bad days thing.

    I have had SOOO many Doctors give me Anti-inflamatorys after I've told them...They don't ease the pain..they don't seem to help at all.

    I was in the ER the other day because the pain was so bad.
    The nurse would not accept my answer to "where does it hurt" I told her the truth "From head to toe,Everywhere,even my skin." She gave me a look of disbeliefe like I was some punk kid junkie tryin to get drugs. And said "no Ms. that is not a valid answer."

    Then I told her I have F.M.S. she asked why I'm not on pain management? I told her the truth "I hate pills, usally in the pass I have been able to control my F.M.S.
    with Hot epsomsalt baths,massages,meditation,and tylenol.,
    but none of that has worked lately"
    I don't think she believed me still.
    But to top it off..they took everyone before me..people who were laughting and eating in the waiting room..while I sat there freezing and cring because of the pain. The freezeing waiting room was one thing but then here came the cleaning guy..he cleaned with this lemon amonia that just killed headache went threw the roof,my thoat started burning,my eyes were burning.When I went up to the desk and said "I have F.M.S. the chemicals are really bothering me,can I please wait somewhere eles?" I got a straigt forward NO. I was there waiting for 6 hours,then the doctor said he knew what I am going threw F.M.S. is a horriabley fustrating condition.then he proceeded with but I can only give you 5 5mg vicodins by law.Please get on pain management.

    So now I spend my days filled with pain..tracing Medical records finding a doctor that takes my insurance who knows what F.M.S. is and is willing to have a paticne with it.
    So FuStAtInG!!!
  2. TinaJones

    TinaJones New Member

    I just want to welcome you to the board - sorry that we all have to be here, but there is TONS of great support here if you take some time to read through the posts. Lots of good advice on how other's manage their FMS. Hopefully you'll find something that helps!

    I could really relate with answering the "Where does it hurt?" question. Boy, that's a loaded question because, for many of us - it really is a head-to-toe thing. I'm sorry that the nurse had no understanding of this.

    Hopefully you can find a good doctor that will adequately treat your symptoms. That really is a HUGE part of managing this illness. There's also many good ideas to try here on this board.

    I know others will have more helpful things to say - but I just wanted to welcome you here. --Tina
  3. phoebe1

    phoebe1 New Member

    I am glad you have come here, you will find understanding and support here as well as a wealth of information that no doctor will be able to give you.
    Your story sounds the same as a lot of people here. I think you can find a list of pain management doctors somewhere, I hope someone else can help with that unfortunately I'm not from the US but I know there is a list. Some people go to a centre that specializes in FMS (aaarrrggghhhh can't remember dang brain fog!) I think they are all over the country. Other members, please help me here!

    The horrible truth is that no-one and I mean no-one who doesn't have FMS will understand what you are going through. Don't waste your breath trying to explain, they simply can not understand it. They might empathize and feel sorry for you, but out of experience I can tell you that most people get tired of hearing about your pain.
    I do not speak to anyone about it, except here on the board, these people understand and here you can vent.
    There are some good articles on coping techniques, but before you can cope you need to get your pain under control.
    I think it is very important for you to find a good doctor and I am sure that we can help you find one.

    You have come to the right place, I hope you see this as your first step on the road to progress. There is no cure for FMS and it doesn't go away, some people go into remission and we all have our better and worse days, whatever you do don't lose hope.
    You can go to the library (on the top of the page next to HOME), there are some excellent articles from experts on how to manage pain, better sleep, medications etc.
    Maybe you should post a thread and ask if anybody knows about a good doctor in your area.

  4. Susan07

    Susan07 New Member

    Welcome aboard I have all the same things you do. It took me almost 10 years to get the FM diagnosis.

    Take care,
  5. enjoysue

    enjoysue New Member

    I posted a doozy of a post like this last night and today was pure hell too. Try and distract your mind too. I can totally relax with music. That is both a comfort and joy to me. Either listen to the music or words or transport yourself someplace else. Put all your troubles if there is anything and put it ona shelf until you feel better to tackle it.

    I went to ER once and I won't ever go back. They'd only give me this shot of stuff and I couldn't have it anyway as I'm on coumadin. It hurt so bad I was gasping for air but I had to wait hours and hours.

    I think every hospital should have at the very least a neck or back wrap that you can either microwave or put in the freezer so they can put us on it after a call to our doc, otherwise someone could get trouble and we wouldn't want that now would we. *sneaker* It's only something we would do at home. It's all so silly.

    That is sick that you couldn't wait somewhere else. If you told them where you are going they'd have been prepared I too get sick with certain smells. Nothing really bothered me til I moved here. It was the carpet cleaner. Oh yuck!! I was literally out of breath. I had to move out for nearly a month. Went to the dr. for some other stuff too and I told her about multiple chemical sensitivity from the fumes in the carpet. head too that was too it all in my I should have told him it's in my nose!
    Sending you nothing but comfortable sunny days and fresh air if you want it. Hang in there Emberfar it will and does get better. I was really hurting last night and posted so I know how you feel. I wish I could do more!! Hang in there sweetie.
  6. greatbarrier

    greatbarrier New Member

    Hi there, new too! where are you guys from, I am a new zealander and we do have some rather good Doctors here - how ever we also have those ones that treat you like you belong in the nutty ward. I so get the 110, I am 57 and my good days feellike 79 and bad day way up there.
    #We are very brave people# - remember that - lot's of deep breathing - I don't know if it will ever change but hang on in there and find something you enjoy doing and can do. I went away to a time out clinic where I learned to deal with my fibro and still have hard days weeks yea yea -we all have to find a way until some one out there finds what it is and what they can do about it - keep knocking on doors till you find a doctor that will LISTEN to you.
    lot's love and blessing coming to you EmberFae. Lynne

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