New to online discussions re: Fibro

Discussion in 'Fibromyalgia Main Forum' started by tamara123, Nov 24, 2002.

  1. tamara123

    tamara123 New Member

    Hello, my name is Tamara, I am a 39 yr old female, I am married and have a daughter and step son, both 11. I have a wonderful husband, but frankly I get tired of the questions...are you ok?....NO I am not, and there is nothing you can do for me. But Thank You

    I have been to several diff drs, and am still suffering trememdously. My current dr will not give me anything, but asprin based for pain, which makes me very ill, she will only give me very small amounts of soma each month, enough for about 2 weeks, and Effexor and Guifenissen....

    I am at my wits end with this disorder...I can no longer hold a job, I cant sit or stand for any length of time. i try to walk each day, but some days, I just cannot do it. My left foot is always bruised and sore, In the mornings, I look like Tim conway in his old man routine...it takes me a while to stand up straight.

    I have tried massage, phisical therapy, I use a tens unit almost daily and take a long hot bath every nite, I do not sleep well, my weight goes up and down, my arms, legs and back are in constant spasm at night, so much that some nights my husband cant sleep.

    I am glad to have found this group and hope to get some positive things from knowing other folks who suffer as well....anyway, thats me, Tamara
  2. tamara123

    tamara123 New Member

    Hello, my name is Tamara, I am a 39 yr old female, I am married and have a daughter and step son, both 11. I have a wonderful husband, but frankly I get tired of the questions...are you ok?....NO I am not, and there is nothing you can do for me. But Thank You

    I have been to several diff drs, and am still suffering trememdously. My current dr will not give me anything, but asprin based for pain, which makes me very ill, she will only give me very small amounts of soma each month, enough for about 2 weeks, and Effexor and Guifenissen....

    I am at my wits end with this disorder...I can no longer hold a job, I cant sit or stand for any length of time. i try to walk each day, but some days, I just cannot do it. My left foot is always bruised and sore, In the mornings, I look like Tim conway in his old man routine...it takes me a while to stand up straight.

    I have tried massage, phisical therapy, I use a tens unit almost daily and take a long hot bath every nite, I do not sleep well, my weight goes up and down, my arms, legs and back are in constant spasm at night, so much that some nights my husband cant sleep.

    I am glad to have found this group and hope to get some positive things from knowing other folks who suffer as well....anyway, thats me, Tamara
  3. LisaMay

    LisaMay New Member

    This board has been the best thing for me. You get a lot of support, advice, suggestions and constructive critism from all sorts of folks.

    I, personally, only have FM (so far) and was diagnosed this summer. Don't give up! It is a daily battle and you are stronger than it is.

    I was working full-time, got laid off, rehired for part-time, got laid off again. I've applied for SSI and received my 1st rejection notice. I plan to appeal!

    Find yourself another doctor - one that can help you help yourself to feel somewhat normal again. It may take seeing several different kinds of docs - primary, rheumatologist, neurologist, chiropractor, herbalist, whatever it takes.

    Glad to meet you and I'll see you around! Lisa
  4. teach6

    teach6 New Member

    First I want to welcome you to the board. It is a great place for both info and support. I'm curious about your doc giving you aspirin with guai. It is my understanding is that when you are on guai you should not take any aspirin. I know someone else who follows this protocol will be along to help you with more details later.

    Unless you are suffering from depression there should not be a reason for you to be on an antidepressant. I would suggest that it might be time to look for another doc who is willing to try more options in your treatment for FM.

    In the meantime I suggest you read all you can so you can be informed and help in making treatment decisions for yourself.

    Good luck.

    Barbara
  5. tamara123

    tamara123 New Member

    I have just applied for SSi for the first time, I except my rejection letter soon. Thanks for the welcome
    [This Message was Edited on 11/24/2002]
  6. tamara123

    tamara123 New Member

    Thank you as well for the welcome....ya know my doctor probalby didnt even remember that she put me on the guif when she added the annaprox.....boy that was a BAD week, I almost ended up at the hospital, which at this point may have been a blessing.

    Any way, looking forward to the comraderie...Thanks again
    [This Message was Edited on 11/24/2002]
  7. Shirl

    Shirl New Member

    To the group Tamara, sorry you are in so much pain. I have Fibro, and I know how miserable it can be.

    My husband does the same thing, he has been at it now for 20 years, so get used to it, they just don't understand, and feel helpless that they can't help.

    This man is still asking me what did you do? You lifted something heavy again to cause that pain? So on and so forth. They would like us to say we are fine, and the whole thing will go away. Wish it was that easy.

    There are others here on the Guri treatment, but the board is going to be slow with the holiday coming, so be patient with us for answers to that one. I do know that asprin is a no, no, on the Guri treatment though!

    I take mostly supplements, and Xanax in the evening to calm my racing brain. But we are all so different, what works for one of us does not necessarily work for the other.

    You might want to go to the 'HOME' page and read some of the articles by different doctors on treatment. It will give you a better understanding of how you should be treated with FM/CFS.

    Again, welcome to the board, and hope we hear from you often, and I sincerely hope you get some relief from the pain soon.

    Shalom, Shirl
  8. tamara123

    tamara123 New Member

    I look forward to meeting the many fine folks it appears are here in the group.

    Dont you sometimes just tell him you are fine, just for fun? He never belives me tho...lol

    I am going to call my dr tomorrow and see what we can do this week......

    I am very limited as to the things I can take, and can afford to take since I have no medical coverage at this point. I have recently applied to Wyeth for their patient assistance program, they will send me my effexor for free....which is about 285.00 a month.....killer for someone who is unemplyable at this point.

    Thanks again, and I look forward to this group. Tamara
  9. twjen

    twjen New Member

    tamara, Tim Conway huh? LOL, at least you still have a sence of humor, I lost mine today completely until that.
    I look pretty damm scarey in the mornings too and feel even worse. Im going to look for a specialist when my ins. changes from hmo to ppo in Jan. I am still shocked that this DD can make you so sick, unable to function well, and not have a blood test or something to find it. Not alot works for me either, accept not working because then I can do what I can at home, I can take breaks at home as needed, say ouch out loud, grimace, etc. I cant even work right now. And today IM not sure I even care. I think DR>S are missing the whole picture, or at least some are. Like everyone says to me, find a specialist for FM.
    God bless.
  10. Shirl

    Shirl New Member

    I had to laugh at that one! I could just see the look on his face if he asked how I felt, and I said; 'Great, Fine, I think I can go run a footrace today'! I don't think he could handle the shock!!!

    I always tell him if I woke up one morning and nothing hurt, I would think I died and went to heaven.

    Take care, at least you have not lost your sense of humor.

    Shalom! Shirl
  11. Rozmund

    Rozmund New Member

    Please do not be at your wits end with this DD - your wits are what will pull you through along with all of us trying to help. First the Search Messages box at the top of the page is a godsend - I use it all the time. Just from reading your post I would search - guaifenisen, asperin, soma, Effexor, etc. and for anything else that you have not mentioned. Someone for sure has had a thread on it and you can learn alot. Also your doctor may learn alot, if you print it out and show her. I always find my husband's presence at the doctor's office carries a bit more weight. As well click on each of file tabs at the top of the page and see what you can learn - it is all there so that we can reduce our stress and start to fight back. If you are brave enough to show information to your doctor - then also check out this in the search messages - doxycyline - while you are searching for real life data - also get a few books - I bought one - written by Devin Starlanyl - Fibromyalgia & Chronic Myofascial Pain
    A survival Manual - and remember this - your muscles (myofascial) are under attack - therefore be kind to them - do not lift - push or pull anything heavy - I replaced my heavy dishes and pots and pans - I no longer make the beds just when I change the linen - and I only do one bed a day when I do this - I spread out my chores very carefully - learn to delegate - permanently - not just when you are tired - by then it is too late - you must conserve your energy - or what we call it in our house - banking it - as when you do you can make a comeback so much faster - it changes day by day - the children are still young but they can manage quite a bit to help out - I have found the key to handling my doctor is this - I ask what information she has to share with on the treatment of this disease - if she offers little or none - then by all means, carry the ball and supply her - also under googles search engine - I keyed in guaifenisen and you would be surprised at all the medical info there is. Also, you do not always need a script if it is helping you. It is sold as a mucinex for respitory ailments but its good side effect for FM is a discovered off-lable tribute. Not every doctor knows this really - when you get into the drivers seat with knowledge, pain management, and some slight modiciations to your lifestyle, you will see the light at the end of the tunnel. The most important people in your life, your hubb and children need you and what energy you can save from the tedium. If you take my reply seriously you will be busy for awhile - if you cannot do all of this I am sure your hubby will help. This does not only affect you - the ripple effect touches all of your relationships and changes them - learn to say NO to anything that will take your energy away from your focus of family and your health. That is so important. It took me quite awhile to face the fact that I could no longer do it all - and guess what I discovered - I don't have to - so good luck and welcome to the world of 20 million of us. As Red Green says, we're rooting for you - your not in this alone. Hugs.
  12. kadywill

    kadywill New Member

    I am so glad you're here~~~you're gonna get a love of love, hugs, support and knowledge from this board. Once in a while you'll get a little constructive criticism and rarely, you'll get a little frustrated, but hang in there and we'll include you in our little world! I have found it necessary to be here each and every day...sometimes, I only cruise by and read to see how my friends are. On the days I feel especially bad, that's all I can manage. Other days, I jump right in and reply to a lot of posts, as I am quite talkative!!! I have become close friends with one of my sisters here and we e-mail and call one another~~we may even get together for lunch one day as we don't live far apart and have a lot in common with one another. You may find this as well! I do get a lot from it and I hope that I can give a little as well. Enjoy and when you need to vent, we'll be here for you.
    Make sure to check out all the other message boards on this site~there are quite a few. (worship, chit-chat, etc.)
    WELCOME!
    Love and friendship,
    Kady
  13. Stormy214

    Stormy214 New Member

    If it will help, read my post on "irony" which is basically anecdotal. I could write the longest post on this subject, but will try to keep it simple. I, too, am new to this board (only a little more than a week). I have struggled with this @#$$#%$# disease (FMS) for 2 years, and have had work struggles, family strugggles, relationship struggles, doctor struggles...my family doc simply thought I was "depressed" and that my symptoms were all related to that (i'f I'm depressed, it's because of the damn disease). I have never been part of a "chat" group or "message board" group until now, and frankly, was urged to avoid them at all costs. Well, that's BS so far as I'm concerned! This is the first time I've admitted this "aloud" (even at this site) but about a week ago I was was seriously considering suicide. It is the only reason I ventured into this message board (a last-ditched effort to find even one reason why it was better for me NOT to do it)and thankfully, I found it. I cannot put in a nutshell everything I've heard and felt and said in the last week, but know this: there IS life after fibro, and here, you have all the understanding and love and support that you need to recognize that and help you through it. You'll find the advice you need to seek your way through to bringing your life into harmony, and, even though we will never have the life we had before, we CAN have a fulfilling life, if we're just willing to suck it up and to do the work. We just need that sympathetic, EMPATHETIC shoulder to cry on when it gets rough. So I hope you'll stay, I hope you'll ask for help and listen to what's offered, and I hope you have the best life you can have with what you're given to work with. We are here to help, and we care....without this board, I probably wouldn't be here now.
    Love,
    Stormy