Discussion in 'Fibromyalgia Main Forum' started by tera68, Apr 16, 2012.

  1. tera68

    tera68 New Member

    Nothing is working for me. For 12 years I suffer, for the first couple of years, no one could diagnose it. They said it was all in my head. It isn't, I am not lazy, I am not worthless, I am not depressed in the way most doctor's think. This flu that doesn't give me a minutes peace. Is why I am depressed. Some one please find me a doctor in Wilmington NC. Thanks to anyone that can help me. God bless you all..
  2. rosemarie

    rosemarie Member

    You are a good person, who just happens to have fibro. Your not depressed, lazy, worthless, ect . I wish I had some thing that would ease your pain and mind. I live in Utah so my suggesting a doctor may not be a good idea for you.

    It took me years to find a doctor that would treat me, and for reasons unkown to me the pain doctors I saw all quit treating chronic pain patients as it was so hard for them to keep their malpractice insurance the costs are very high for those who treat with pain meds.

    I have a doctor who treats my fibro, but I think he keeps me as his patient because of the oesteo-arthritis in my knee's, DDD, spinal stenosis, MPS, and he keeps wanting to put me on the lateset fibro meds. I don't want to take LYricia or any other antidepressant, any thing with a mood elevator.

    God bless you , I pray that you will find all that you need to get treatment.
  3. FaithHopeCure

    FaithHopeCure New Member

    I have suffered for 10 years and my worst months are during July and November. Even when I know that these months are horrible for me and prepare as much as I can I still have bad fibro issues.

    This last November I had a horrible dream that seemed very real. I was lost in the desert and felt like I was going crazy. Then I ended up in a hospital and I could not remember who I was. There were doctors all trying to figure out what was wrong with me but no one could help. It was terrifying! Luckily, it was a dream! When I get really bad like that, I have to go back to the basics and try to get as much rest and treat myself and good as I can! Eat well and take your good to yourself and keep looking for a compassionate doctor. I will pray that a good Doctor comes into your life!
  4. clementyne

    clementyne New Member

    Your story is OUR story! I can't tell you how many Dr.'s over the years told me there was no reason for my pain. And when I finally had my Dx, it was for something no one thought was real - like we all got together & decided to pull the wool over the worlds eyes!

    You are not worthless! You are not lazy! And it most certainly isn't all in your head! As for depression, as I finally told my Dr. "I am not 'depressed' but if you hurt so much that walking to the bathroom was an ordeal, wouldn't you be depressed?"

    I can't help you out with a Dr., either but I do know how you feel.

    Thinking of you & praying you feel better soon!
  5. Mikie

    Mikie Moderator

    I'm so sorry. We all understand here. What helped me the most was grief counseling therapy. We grieve for our formerly healthy selves just like we grieve when someone dies. We have to get through the steps of grieving and get to acceptance. Acceptance doesn't mean giving up or giving in. It is simply a state where we no longer need to ask why and concentrate our energy on healing. Finding things which help us is a long trial and error process but when we do find them, it is worth it. The biggest help is finding a good doc who understands our illnesses. Traditional medicine in this country has been woefully ignorant of these conditions.

    Sending up a prayer for you.

    Love, Mikie
  6. Trnsplntsyr

    Trnsplntsyr Member

    I live in burlington, NC. I had fibro since 1997. At first I used to say why me. Now I say why not?
    I moved to Nc in 2004. It's wheather here had helped me alot. I live in a cold climete before we moved down here It was pretty bad there. Now It is starting to act up again. I still work partime. I hurt all over and now it is all most unbearable for my husband to touch my back.Work used to bring joy to me. Now today it is'nt. But I cna say tomarrow I be all right with work.
    My husband thinks it is a fake disease. I do not.
    I had appalyed for ssd in 2009 had an appeal in 2o12. Today I got an denial letter. Somehow I keep on going. It is hard. But that is what fibro people do.
    We all have to keep on going no matter how bad we feel. If we give in we might as well give up. I am not going to give up I am going to fight this disease tooth and nail if I have to. I am going to resume things that I gave up because this disease got to me a little while.
    i whish i can find as good doctors here as they had in my old home town in upstate ny.
    I end up with bad doctors. Recently I change docotrs here. I think in there group has someone that can firgure how to treat my worsting sytoms.
    So you see Tara we all have to fight doctors, husbands, kids and ourselves just to live day to day. To believe in ourselves that fibro is not going to get us down for the count. I am not giving up. Someday there will be doctors, husband and kids that will believe there is such a thing as fibro. That it is not a fake disease. But we will not let them feel sorry for us. My son allways wants me to use a cane or one of those shopping carts with a seat. I used to let him talk me in using those things. I am not going to use them as much as I did. I am also going to walk my dog around to. For two years my life almost grind to a hult. Next week i am getting an appointment with a different doctor in that medical group I go to. I am going to make them listen, I am going to fight it. I am going to believe in myself, My God and family. I am not going to give up.
    Are you with me Tara? Just do not let this disease get to you. I did for a little while.
    I just realized It is just a bump in the road. Just like they have in parking lots! Just go slow at first and then race through the parking lot of life. Fibro is not the spot by the door with wheelchair it is just the one far off and up a hill to a great life. We all survive we will be better because of it someday. ( i am just using the disable spot as a firgurative) Sorry my spelling went bad in 1997. I use one of those placards for my knee problems. But now I do not mind every once in while to walk far from my husband's truck to the store a longer distense then I used to.
    I am sending my Love to everyone here.
    Tara there is hope.
    Love, Joy and peace

    [This Message was Edited on 04/20/2012]
  7. rosemarie

    rosemarie Member

    I ask that question all the time. Why me? Why do I have fibro and what did I ever do to cause it? IF there is a reason.
    I get angry about it and angry about all the things my brain still thinks my body can do but it really can't.

    Having fibro is a daily struggle , we all have the why me's, what did I ever do to deserve this pain? Why does no one understand about fibro and why don't they understand that with out the pain pills I take I would not be able to do the things I do now. I struggle with my daughters about taking narcotic pain meds. Mom you can't tend my kids becasue your stoned? Your always sleepy and when we call you sound like your drunk slurring your words , we know it is from your pain meds. Right ? NOT true. My pain meds don't make me sleepy, lack of REM sleep does that, as well as fibro, cmps, back pain , oesteoarthirits in both knee's and much more. EVery thing flares at different times and I pay for it.

    I can go to bed at 6 am after taking my mscontrin and hydromorphone and one half of a soma and go to sleep, It never fails that as soon as i hit a deep sleep my girls call me and wonder why I sound so sleepy, and my words are slllurred and some times I don't make scense and even fall alseep while talking to them on the phone.
    I get really sleepy at certian times of the day. early afternoon to early evening and it is a struggle to stay awake and it seems that my girls only call me when I am so sleepy I can't stay awake and then I don't make scense when I talk to them . It is not due to over doseing on my meds as I usually don't take any pain meds after 6 am. But when my body says I am sleepy it means it. I hate it. I wantt to sleep when other people do like NOW! but I am wide awake not sleepy at all. It irratates me to no end.

    EVery day I wonder why? I have so many things I want to do but find it is such a struggle to do them and some I can't do , even though I still think I can. I told my daughter that for this upomming Rondevous I wanted to sleep in the TIPI with her dad on an air mattress. She laughed and said " Mom you can't do that because you can't get up off the air mattress. And you don't sleep at night so you would be sleeping all day long and in pain. And besides that I can't sleep on an air mattress on the ground any more either" Well that let the air out of my balloon. here my brain thinks I can do some thing and yet it is true I can't get up off an air mattress on the ground by my self and it is a struggle with help to get up off it.

    Shoot my dreams down. people. I know that I have to adjust and get it thru my head that just because I used to do some thing does not mean I still can do it.

    I struggle with fibro and cmps every day. I dont' understand it how each pain syndrome works why it does what it does to my body, Why can't I do waht I want when i want? Why is it that when I walk around at the rondevouse I will pay for it big time the next day , ok even the next few hours afterwards.

    I understand the pain I have from when I shattered my left wrist and broke the radius, It was a nasty break and needed surgery to put me back together again. I have a plate made of titaiumn and screws to hold my wrist together again. I get that pain, But did one of the screws have to come loose? was that nessisary to do to me? It was not fair but then neither is our living with fibro.

    I hate fibro and evey chornic pain disorder there is. I hate it that there are no answers, that people, doctors don't understand how it affects us, I hate it that no one has any answers only guess's to which m edication may or may not help it. Or maybe the meds are making it worse? Who knows? I have so many questions and have so little answers.

    But I have found this forum and it helps me so much, I can vent, whine , complain, and cry and no one is going to tell me that I am being ababy about it, or that "It can't hurt that much" or my fave "But you did that yesterday and you didn't hurt so bad". Here everyone understand and accepts me for me .They know what we go thru daily, and that each of us are different and have different symptoms and react to pain in different ways.
    Thanks you all for this forum, I love you all.
  8. Janalynn

    Janalynn New Member

    I just haven't asked the 'why me' question. I mean why anyone? I didn't DO anything to cause this. I don't let my head go there.

    Why all the people who get cancer (yes I was one of them), why all the young people that die. We are all suseptible to terrible things.
    I try to think that for some reason I am supposed to be able to handle this, that somehow I am going to get something out of this experience.

    I have to think that way.
  9. Allen

    Allen Member

    Assume you realize that you must see a Rheumatologist????? Check the hospitals in your area and look for physician referrals.
  10. songbirdpoet

    songbirdpoet New Member

    Dear Fellow courageous people~

    I needed to read your comments especially today. I just realized that I have
    had Fibromyalgia, Osteoarthrtis, and Hashimoto's Thyroid Disease for 19 years.
    Most of those years, I have felt at least 10 to 20 years older than my age.

    My Fibro developed six months after a whiplash accident. I never ever
    recovered much to my sadness. I think that Mikie has hit the nail on the head.
    We won't ever be the person we were. Ever! Acceptance takes time and grief
    will keep us on our toes through all the steps involved. Many times do I spiral through them. By the grace of God am I still alive and want to be alive though
    each day is difficult to some degree.

    Here we have the opportunity to become someone else. But I struggle with
    new found purpose and implementing plans. I have truly lost so much of
    myself. I don't have the drive nor the energy. My world has gotten so small.

    It's hard. Life is hard sometimes for anyone. When extra stresses come, it
    is like I have no reserves left. Only God and God alone for me. No big projects,
    no big ideas, no big plans--just little ones & they can be overwhelming at times, too. Just doing what I need to do with daily routines and knowing that
    I will gladly need recoup time if try special things, is it. Sad but true.

    But I am of value and I am of purpose just for who I am. I, we, must remember
    that in God's sight we have value. He created us. He is never disappointed if
    we are doing our very best at any given time. He understands our hurts and
    frustrations when others do not. Only through the Holy Spirit and Jesus, Son of God, can I continue on. Yes, it becomes that bad at times. But I hang on because as a believer this life is only a little blimp & I will have a new body.
    Glorious HOPE!

    By the way, I repressed that I was an incest victim until I was in my 40s.
    Been dealing with all that comes with learning to survive and thrive alongside
    the chronic pain and chronic fatigue issues.

    I encourage all of you to seek His face and to ask Him to show you the way.
  11. Trnsplntsyr

    Trnsplntsyr Member

    well here I am again. Yes I see God everywhere. He is there. i was again dianoze with fibro, May5th this year. I went to a doctor in burlington, NC, One who belongs to the same medical group of my reaglar doctor. The only medical group that my husband believes in. She was a nice rumetelogist. She comfirm fibro dianoses I had in the mid 1990"s. To my husband from then on to when I seen the doctor in may he thought I was faking this illness.
    he still thinks it hard to believe because there is no blood test for this disease, no other special test like xrays. So in a way he needs to talk to someone like my doctor to learn about this disease. She offered to talk to him about my problems and what i can or cannot do for it. God helped me fine somone who my husband might believe and be able to talk to her.
    I hope he wants to talk to her.
    But one thing my doctor said to me is to take lyrica. I said i could not because I have no presciption coverage. She said how can I help you if you do not wnt to take lyrica?
    So she wants me to take aqutic threy and see a nutrinst. I have not found one yet. I still take gabafintin which does help with the bad pain in my legs.
    but I am still hanging in there. I am not giving up. I might be more tried this week only because i push to hard when i feel better. Then i pay for it the rest of the week.
    you see I transplated some plants that my husband did not want in the front yard. Daylillys stems look to weed like for him. They look like grass to him. I also transplanted some ferns , diathus and black eyed susans. Planted one window box and about six pots of flowers. Made a hanging basket holder, and started another one. I do macmermay. The art of knotting yarn or anyother fiber that is like yarn.
    I call my little garden the out of the way garden. Where plants can grow with any worry that someone going to come with a mower or weed eater at them.
    I gues Fibro is sometimes like a lawnmower or weedeater. Like my plants i will continue to grow desipte people or this disease trying to cut me down.I just stay myself and try to help others with words or support. Thoes things I do are like blossoms on flowers that before they bloom they look like weeds. i just keep coming back.
    I whish everyone, Love, Joy and peace,

    [This Message was Edited on 05/10/2012]
  12. Mikie

    Mikie Moderator

    That doc didn't know that pharmaceutical companies have free meds for those who qualify. Some have a sliding scale but they almost all have something. If you had seen a more knowledgable doc, she would have known that there are other, older meds which may accomplish the same thing as Lyrica. Many here have gotten help with neurontin. I take Klonopin and it has been like a miracle drug for me. Only thing is that Medicare won't pay for it but it's not too pricey. All these meds have side effects, the most noticible is that the body will develop a physical dependence on them (not to be confused with addiction, a totally different thing). This means that if you ever stop the med, you have to wean off slowly to avoid withdrawal symptoms.

    Try to see if you can find a good doc who has no doubt that our illnesses exist. I find it amusing that this doc doubts the existenance of the illness but prescribes a drug specifically developed for it. Duh!

    Love, Mikie