Discussion in 'Fibromyalgia Main Forum' started by papee, Mar 15, 2006.

  1. papee

    papee New Member

    yes my doctor has said that this is something that never goes away but it does not get worse either . but i never feel good and i recentely heard that some one has died from this is it something that can kill you in time? i just recently found out i have this I have hurt for over 3 years and the dr just found out what it is and no one in my area seems to know much about it , my job has taken and put me on disablity which my dr said is not what i need that i need to stay active. but the job i do is not good for me either i dont know what to do and i need to fine a dr that can help me more if you can help me find a dr in my area would be great also . i do not sleep good and i feel so tired all the time and summer is coming i dont want to keep feel like this i have always been a very active person and this is just not good . i can not enjoy things i have always done and i can not seem to do the things i want to do as i have in the past . i get stiff if i set to long and it is hadr to bend and move at times and it is very upsetting to me , i can not enjoy my grand kids like i use to and it affects my home life with my husband because i never feel like doing the things we have always loved to do . my sex life stinks also and i just dont know what to do i keep trying to go and do things and then the next day i feel worse . please help[ me fine a good dr in my area. i also do not like taking medicen . and then they have all thse side affects and i dont like it i feel bad enought . thanks for you help

  2. Andrea4

    Andrea4 New Member

    everything i read says fibro doesnt get worse, but i find i am having worse flares than when i was diagnosed 2 yrs ago. perhaps its in reaction to other things happening in my body, but in my mind, i feel like my fibro is worse.

    this board has lots of good info and support...start skimming the topics and find what relates to you. There are some real caring folks here.

  3. Pianowoman

    Pianowoman New Member

    I'm sorry you are having a hard time. It does sound like you have Fibro but you do need to find a Doctor who understands.. You don't say where you are from but there is a Doctor Referral at the top right of this board that might help you.

  4. papee

    papee New Member

    thanks for getting back to me . there are days i do not want ot move i hurt so bad . i have hurt for 3 years and they just finally say this is what i have and they dont seem to know mush about it or care from what i see. i just get so tired of hurting and my husband does not see how i can hurt so bad and it gets use in to big fights and it is bad it is like no one understands . thanks for talkinging to me
  5. dragon06

    dragon06 New Member

    I have read that FM is progressive and I have read that it isn't. There seems to be differing opinions on this. My mother has had it for 22 years and I can trace some of my symptoms to childhood. From our experiences alone I will say it is progressive and it does get worse.

    That being said I have also seen people go into remission for months and years at a time, so that is possible too.

    Some people don't go into remission but find a way to manage thier symptoms so they can lead close to normal lives.

    Some of us don't get as much management and live tougher lives. Everyone seems to be affected in thier own ways. Thats part of what makes this illness/syndrome/disease so hard to treat/diagnose/deal with.

    I will say that I have never heard or read or had any doctor mention someone dying from FM, I do not believe it is fatal.

    This is a very good place to start research. The best course fo action is to get a doctor versed in FM (Fibromyalgia). There is a Good Doctor's list on this site as well as on (there is also an email for a lady who keeps a more detailed database of docs in all areas).

    Educate yourself, talk to people who have it, talk to your doctor/doctors and learn. Finding a treatment for you can take some time.

    If you can't work you can't work. Some of us can't. There are those that are helped by activity and exercise and some of us get worse with it. Do what your body tells you is right. Try to get out when you can, pace yourself, learn your limits. Sometimes you will exceed those limits like we all do and pay for it but that has come to be a sort of part of life.

    Have your husband read the same research you do. There is a "letter to normals" that may be helpful. Also there are a few posts on there recently that people posted how thier spouses deal with them having FM that could be very helpful to your husband. Have him make an account and talk to us I will gladly talk to anyone who is curious. Once you find a good doctor, take him to the doctor with you, sometimes just having this reinfornced helps people come around.

    Please come here and ask any questions, we will do our best to answer. We will gladly listen to rants and problems and funnies and whatever you feel like :) welcome.

    Sorry I really didn't mean to be so long winded...

    [This Message was Edited on 03/16/2006]
  6. papee

    papee New Member

    iam sorry i did not say where iam from i live in newyork state a small town called jamestown it is near buffalo ny about 2 hours from there i checked the board for dr and there is none close to me
  7. angeljoe

    angeljoe New Member

    Welcome to the board! I disagree about it not progressing too. I had never heard of Fibromyalgia until I got dx. I did research it online but with my on symptoms I do think it progresses. My flares are much worse now and it takes me longer to overcome them. I went from one doctor to the next and some believe and some don't. I told one Dr that I didn't care what he believed in or not. I said I just want to be better. I don't want a bandaid prescription I want to be better. I hope things start looking up for you! Good luck finding a doctor in your area.
    God bless,
  8. papee

    papee New Member

    no problem about being long this is all new to me and i need to know every thing i can about it . i hurt so bad some days and then others i get to feel ok and over do because the next day i feel rotton and no on seems to understand it . my husband can not see how i can hurt so bad and it is very hard our lives have changed and itis not for the good . he does not understand and i tell him iam not sure i understand it either. iam trying to fine out what ever i can about it and then tell him but it dont help him to understand. i have checked in to dr and there is none close by where iam liveing jamestown n y i really would love it if someone knows of one near here . my dr does not seem to know much or seem to care and i need someone that understands. i hate this and my whole life has been turned up side down and it is no fun . sorry i have gone on and on but is nice to talk to some one . thanks for your time hope to talk again soon
  9. papee

    papee New Member

    thank you i know how you feel that is how i feel no one seems to care or understand how you feel some days iam ok i can deal with it an thenother days i just want to crawel in a hole and die it will be so bad but thanks for talking it helps
  10. dragon06

    dragon06 New Member

    Please go to the website I put in my post and look up FibroBetsy under the good doctor's list there. If you email her where you live exactly she can look up doctors in her database for you. She has a very extensive list compiled by FM patients.

    I could not find a doctor near me on the lists either but I emailed her and I got a list back with 14 docs near me...some as close as 15min drive and some up to an hour. She may be able to help you, please try.
  11. ggks

    ggks New Member

    Here are some suggestions that MIGHT help a bit.

    Eat an apple sometime during the day or one cup of unsweetened applesauce. In the evening eat a bananna. This will give you magnesium and malic acid. If you have children let them eat it too.(don't forget hubby)

    Sleep - In the evening, around 8:00, in addition to whatever you usually take, I will take a calcium pill in the form of Calcium Citrate with Vitamin D. It helps me sleep better. ggks

  12. papee

    papee New Member

    thank you for your help I will try the dr list Iam new at all this so hopefull I can fine it I dont know alot abou these pcstuff thank you
  13. papee

    papee New Member

    tahnks for your input I do eat an apple a day sometimes two and I dont eat alot of bannans but I do eat them . I just am so tired of hurting and no one understands it. but I will keep trying and thanks
  14. papee

    papee New Member

    hi thanks for your input . i hope I can fine a dr that understands it all. I do not like taking pills . they did give me something to help me sleep it was an anitdepresent and i just dont like how they make me feel. Iam always so tired and dont feel like doing stuff and i force myself to do things . but my husband can not undrstand the pain he says iI can not be in that much pain . will I told him one day that I hope he has to go thru it and then no one understands him and see how he likes it but he just gets mad at me . also at times just rubbing my legs or back and hips it will help but he wont do it for more then a few min and i tell him if he cared enought for me he wants to help me that helps me and he just wont do it . some times i put heat on my hips or kness or where ever I may be hurting at the time and that seems he help . Iam always cold and he does not understand that either it is how can you be cold it it 70 in the house and i can be freezing why is it so hard for them to understand how bad it is that you feel he will want to go do things and it is like i dont feel like it and he gets mad at me . but i am just to tried and can not do it and then if I do go and it i pay for it later that night or the next day and i tell him and it is all in my head iam crazy and it makes me so mad at him. an the mood swings I can be fine and then he can say somthing to me and i just go off and get so mad i hate this feeling because I never before would snap or not want od do things i was always willing to go and keep on going and it is so hard now because i can not do it . we have a motorcycle and i have always loved to ride and now it about kills me we go for a few hours and i can hardley walk wemnt i try and get off it. an he tills me will maybe i better start looking fo someone else to go with me. and he does not relize how it hurts me and all because he does not understand it. and i have tryed to get him to read things about it and he does but he still does not get the picture of it all. my arms go to sleep on me like and kill me if i do alot during the day and he dont see how it can be will sometimes i dont either and i feel like iam falling apart and i do not like it it was not something i want to have . sorry for going on and on but sometimes it is good to vent . and i thank you