Help me please im scared!

Discussion in 'Fibromyalgia Main Forum' started by raslin25, Aug 3, 2006.

  1. raslin25

    raslin25 New Member

    I am newly diagnosed with fibro, and im scared, ive been suffering with it along time and been told its all in my head! finally i saw a rhumey, and he dx me! now ive started on meds but nothing could have prepared me for the fact that i am still in pain and tired!

    My husband is very no excepting of the fibro and says ive been worse since taking the meds! please!!!!!! and my kids are helping out with everything so much! my family lives 2300 miles away, and i miss them desperatly, im, still working but my goodness at times it feels like its going to kill me!

    I feel so alone and like know one cares! i tell everyone that i am fine, and i feel fine and i keep running a 100 mph all the time just because i have too! whos going to help! and my hubby doesnt want to hear it, he wont read anything the dr gave me or look online or even go to the dr with me, all that is around us is his family and they think i am nuts, no one thinks FM pain is real, its just in my head!

    Im scared, im scared of what the future will bring and that im going to get worse, and i hate not sleeping and hurting and being tired all the time.

    I just feel lost and alone! and im scared of all things to come! any advise? ill be glad to hear it!

    Rachel
    [This Message was Edited on 08/03/2006]
  2. raslin25

    raslin25 New Member

    that? i cant understand! it is always about my hubby, how much his back hurts, how hes tired! ugh! it makes me want to pull my hair out! im sorry his family is not nice to you! my inlaws are terrible to me also, i know how that feels! did you talk to your fiancee about his behavior? how did that go? shoul i talk to my hubby?

    rachel
  3. Smiffy

    Smiffy Member

    (((Rachel)))

    Is there a local support group that you could get to, so you don't feel so isolated?

    You need hubby's support & assistance, & he is in denial.
    Ask him if he would help you if you had cancer, & then tell him that you have a different but still very real physical illness (accepted as such by the World Health Organisation). If he doesn't start helping, your health will deteriorate further because of stress & fatigue.

    Maybe if you left enough articles & books around the house he might pick one up. Would your specialist talk to him?

    You have a very real, excruciatingly painful & disabling condition that makes you tired & mentally foggy. The pain meds make you more tired.It looks as if you will have to give up work for the sake of your health. Please don't let hubby & in-laws abuse & bully you into overdoing things on a daily basis as you are doing now.

  4. cjcookie

    cjcookie New Member

    honest and not sugar coat anything. It all comes down to doing what is best for you. This is probably not going to go away and you have to find a way to live with it. You don't have to go 100 mph - you do only what you can and tell your husband he will HAVE to help out more. Ask him if he remembers that in sickness and in health thingy. DON'T tell everyone that you are fine if you are not. They will believe you.

    ASK FOR HELP from friends, church members, anyone you think might help out if you need it! Even if it's just giving your kids a ride at times - that's not much of an inconvenience. Tell you husband to come to our board and read. If he won't, tell him I'll get someone to come break his kneecaps. I would do it myself but I can't swing a bat any more :)

    This may get worse. I don't want to scare you but I think you want honesty. It's important to find a way to cope now in case things do get worse down the road. You may have to leave your job eventually. From the sounds of it, you are having a hard time now.

    The good news is even though mine has gotten worse, I have found more ways to cope and great advice on this board. Don't ever leave us!! There are some really smart people here to help you.
  5. raslin25

    raslin25 New Member

    it means alot to me, to talk to people who feel as bad as i do! My hubby wont go to my rhumey with me, i guess he is not ready, and im always too tired to fight with him about well anything, but i need to try, and yes i am struggling with work and forgetting more and more, my rhumey suggested that he come with me, but i cant quit convince him to come yet. i am scared, it seems like i get worse each day, and its bizarre, and i can never sleep even with the amitriplyene, maybe 1 night a week, its hard to cope with at times, thank you for all of the advise and support, i am so grateful to have people to talk to that know what im going through!
    ((((( HUGGGGGS)))

    Rachel
  6. rockgor

    rockgor Well-Known Member

    Sorry you have this DD (that's board talk for damned disease), but good that you found us. No cure yet, but you'll find lots here: friends, info, jokes, recipes, etc.
  7. MsE

    MsE New Member

    CJCookie's advice is excellent, Rachel.
  8. raslin25

    raslin25 New Member

    29 and counting, :), i was young when i had my kids, 16 to be exact and 21 by the last one, i feel like i have had to be a responsible grown up forever! i have lived with enormous stress for the last 2 years and now i am anxiety ridden and i hate that! the stress is what gets me, and makes the pain worse,

    I live in a very small town and there are no support groups here at all!
    I am glad that i found all of you so now i have people to vent to and get answers from,
    and i know this is a DD that people think is all in your head, and its hard to cope with that,
    the support that everyone gives one another on here is incredible! im so glad to be apart of that!
    thank you again,
    Rachel
  9. Aghllw

    Aghllw New Member

    We care!! WE all care about you and what you are going through! I promise you will have some good days too. And you will find a way to "live" with this. It is easy to give up when you are in so much pain (all over pain) and most people either think you are crazy, exagerating or lying, but you have to think about yourself and your babies!! That is a full time job in itself.

    This sounds very cliche, but count your blessing everyday. There is usually so much more positive than negative when you look at them side by side. The pain is the worst. And, you take your meds...cause it is YOUR body, not your husbands. He can't tell you what to do. I wish that people would try to understand this DD a little more. It is frustrating.

    Hang in there and let us know how you are doing!! I am new to this site but there are so many wonderful, caring people here that know what you are going through and can help by listening and offering love and support. And, lots of HUGS!!! They give lots of HUGS here!!

    God Bless,
    Lisa
  10. kholmes

    kholmes New Member

    I'm glad you posted! There's nothing quite like Fibro, CFS, or Lyme to make you feel terrified, vulnerable, alone.

    But this board is a GREAT stress and fear reducer, with lots of good information and good friends--and some humor and fun, too.

    Keep on posting and reading for information.

    Kholmes
  11. lenasvn

    lenasvn New Member

    Seems you are a busy bug. Some say that people like us who push their limit too much trigger the onset of this DD. If you want to be able to keep working and bring home that income (I'm sure your DH appreciate the contribution!), and if that's gonna happen long term, you will need to slow down at home, or you will have too many flares/ crashes.
    You don't want to burn out. Maybe the prospect of loosing a job/ income down the road will get your DH going.

    Or, you can just send him to me,and I'll deal with him: "NOOOOW YA'LL LISTEN TO ME, AND DON'T SPEAK UNTIL I SAY SO!!! I'M IN A REEEALLY BAD MOOD WHEN I'M IN A FLARE!"

  12. Cromwell

    Cromwell New Member

    Even though meds can help many with FM they do make others worse. I have found what works for me is nutritional supports and supplements probably more than meds. I tend not to take meds as I am sensitive to them and they make me feel worse.

    The reason I am passing this on is because just because the meds make you worse or do not work, it does not invalidate the illness.

    Please scan the search here and see if anythign else can work for you, start with the shake recipe, and click on Stormskye as she posts a lot of good med advice. Epsom salt baths are good

    Something old fashioned that works is standing in a wram shower with a pot of 1lb of fine salt mixed to a paste with water reday. Turn off the shower after you are warmed and rub the salt over you whole body then a cold shower to rinse it off. This can really help the muscles that are in spasm.

    I hope you start to feel better.

    Love Anne Cromwell
  13. cjcookie

    cjcookie New Member

    I take heavy duty muscle relaxers at night to sleep. Four Xanaflex, I also take Neurontin, Gabitril and Despiramine. Maybe the doc could give you something stronger. Getting some sleep will definitely help.
  14. toughone

    toughone New Member

    I've had Fibro for many, many years, and I still get scared. Right now, I'm in the worst flare I've ever had, and I came here 5 days ago for help. Everyone here is absolutely wonderful--they have calmed me all week.
    The only support I really have are my kids, ages 19 and 17. They are my lifeline. My husband would rather pretend it doesn't exist, his parents think I'm a lazy slug (eventhough I never sit down) and my parents think if I wanted to feel better, I would. So, Rachel, I know exactly how you feel. You are going to go through a lot of different emotions (this is normal). I only wish I had known about this message board so many years ago--it would have made my life a whole lot easier. So you have the advantage here--whenever you feel overwhelmed or scared or sad, log on. There will always be someone special here to listen to you and reply.
    I'll watch for you every day...
    Take good care of yourself--you are special, too...

    Bonny
  15. crisleem

    crisleem New Member

    I too have dealth with this for years.
    I was finally diagnosed in Jan. 2000. My husband had a tough time 'understanding' at first too. And didn't want to be involved much in learning about it. but I think as he has watched me deteriorate he has really changed. He watched both his parents die very slowly as a young boy, and I know watching me in pain is freightful for him. I have tried very hard lately not to say much about it, unless I am doing so bad I can't function at all. But I have changed from whining and crying to not mentioning my pain at all till he sees it and asks to help. I think as women we allow ourselves to overbear our husbands. Not intentional of course. But in my opinion they just can't handle things like we can. They can't handle seeing us cry or suffer. They'd rather pretend it's not real. so, I just changed how I reacted so in turn he did too.
    I still so want to go hiking, camping, bike riding, work in the yard, build things, lift heavy things (I love to rearrang the house), but I can't anymore. And my sweet man has really seen it lately.
    Of course maybe I just really miss him right now. He is in the Reserves and I won't see him till Dec. So he is like an angel right now....lol!
    Crislee
  16. ladysings

    ladysings New Member

    hi racheal I am dealing with the fact i have fibro now. I was told i had it a while back then I kept saying it was depression, and then anxiety, and a vast array of other stuff. then i found i have hv 1 and 2 in my blood. I have a feeling before it is over I may found out other things are in there. I feel terrible right now and scared too.

    I cried tonite, I cannot do the things i love to do anymore, I have a horse that is a world grand champion. always loved to ride, but i can't now. I tried to ride her not long ago, got sick and weak and had to stop. i can't work but 1 or 2 days a week. and I may have to quit. I am so scared that just the thought of not being able to take care of my cats hurts me to the core. they are all i feel like i have left. and the tv. and my computer.

    i am here for you and all of us here are in your corner. I liked the idea someone said about lying info around in your home about fibro. print stuff out and paste it on the walls i think i will too. jackie
  17. willruthie1965

    willruthie1965 New Member

    Let me talk too him,My hubby got sick but I believed him,but nothing prepared me for how horrible this is untill I got sick.There are times I literally don't want to go on anymore.I also could have my husband talk to him or just let him see all these post of people suffering.Especially if he reads post from prominent men who was brinning in the big bucks to give it all up because of this terrible disease.I am so sorry I at least have my hubby and I think my children are starting to understand.But I will always be here if you need to talk ,Ruthie