New to boards, had to vent

Discussion in 'Fibromyalgia Main Forum' started by Cheechee, Oct 23, 2002.

  1. Cheechee

    Cheechee New Member

    Hi, I am new to this board actually this is my first time on any board. My first visit was earlier this week. I am in my 30's and have been suffering for many years. I am so very tired, I hurt all over, even my skin hurts. My back and RT. shoulder give me the most trouble. I do not currently have a diagnosis but FMS has been tossed around at the dr. offices. I suffered from a bad case of oesteomylitis(bone infection) of the clavicles when I was in my 20's. I also have severe asthma and take 5 medications for it alone. Finally got a doctor to give me something for my pain and soon will be going to MAYO CLINIC. I take Ultram and vioxx now. I also can't sleep at night, I wake up in pain and can't get comfortable. I take Remeron and Tylenol PM to help me sleep. I haven't been able to work for several years and have been on disability. My case has been reviewed and they said I am NOW able to work. I got a Lawyer ( I couldn't deal with it anymore) to help me appeal the decision and we have a hearing in Nov. but I will not have gone to Mayo yet and a diagnosis would help. I am so stressed out and I feel so worthless. Needless to mention I also suffer from depression. I live in a small town and I worry what people think of me, they can't see what's wrong with me. I never have been a lazy person yet I feel like people think of me as "just being lazy". I want to scream. It helps to read this board and see others who are in a very similar situation. Thanks for letting me vent. I have to go, can't sit hear any more.
  2. Cheechee

    Cheechee New Member

    Hi, I am new to this board actually this is my first time on any board. My first visit was earlier this week. I am in my 30's and have been suffering for many years. I am so very tired, I hurt all over, even my skin hurts. My back and RT. shoulder give me the most trouble. I do not currently have a diagnosis but FMS has been tossed around at the dr. offices. I suffered from a bad case of oesteomylitis(bone infection) of the clavicles when I was in my 20's. I also have severe asthma and take 5 medications for it alone. Finally got a doctor to give me something for my pain and soon will be going to MAYO CLINIC. I take Ultram and vioxx now. I also can't sleep at night, I wake up in pain and can't get comfortable. I take Remeron and Tylenol PM to help me sleep. I haven't been able to work for several years and have been on disability. My case has been reviewed and they said I am NOW able to work. I got a Lawyer ( I couldn't deal with it anymore) to help me appeal the decision and we have a hearing in Nov. but I will not have gone to Mayo yet and a diagnosis would help. I am so stressed out and I feel so worthless. Needless to mention I also suffer from depression. I live in a small town and I worry what people think of me, they can't see what's wrong with me. I never have been a lazy person yet I feel like people think of me as "just being lazy". I want to scream. It helps to read this board and see others who are in a very similar situation. Thanks for letting me vent. I have to go, can't sit hear any more.
  3. stillafreemind

    stillafreemind New Member

    promising..right? I hope you will let us know how they treat the mention of these diseases.

    I know you are frustrated and feeling very poorly..not to mention you are probably stewing about income and so on. I would only say that I would at least rid myself of wondering and worrying about what others might be thinking..I know, easier said than done!..But once you break through that wall..I think a person does feel better. I had a hard time with that too...and to be very honest..on some days with some people..it still bugs me..its just that by now..I do not let it have the power over me it once had.

    I wish you much luck..and better health soon. Please keep posting.
    .. still
  4. mariac2000

    mariac2000 New Member

    try to hang in there until you go to the mayo clinic. i too have no diagnosis yet and it drives me crazy!! i wish you lots of luck.

    maria
  5. Mikie

    Mikie Moderator

    Welcome to our board.

    One of the things we have all had to get used to is not worrying about what others think of us. We know we are sick whether or not we look like it. One of the nice things about coming here is that we all understand how you feel.

    Getting diagnosed is a long process with lots of testing. It is one of the most difficult parts of what we go through. Once we get some treatments which help with our pain, fatigue, and other symptoms, it does make a difference.

    We are all pulling for you and I am sending up a little prayer. Hang in there, Kiddo.

    Love, Mikie
  6. ladydi

    ladydi New Member

    Dear Fibro-sister CheeChee,
    I Feel your pain in your letter. Please know that I
    will be thinking of you. Sometimes we just don't know what
    the next day will bring. It's such a struggle to feel all
    alone, and hurting both physcially and emotionally too.

    It sounds like you have the Docs on your side at least.
    I hope your trip to Mayo will work out.

    About your Asthma? Do the meds from that make you anxious? Just wondering. I have heard that they can.

    Don't think twice about feeling LAZY. What can you do about it? I feel the same way sometimes, but I have to let
    the guilt go. (Guilt, is a major stressor") and you don't
    need that right now. You just need a friend. And please
    know that you have already found some here.

    I'm glad you posted, that's your first step to helping
    yourself cope with this DD. You may not understand all the
    heavy stuff at first, me neither, but I just read what I can understand and go on. I do alot of praying.

    Please know I will say a prayer for you right now. Well,
    I just said a prayer for you. We all need that everyday.

    God Bless You.
    Warm Fibro-Hugs to CHEECHEE
    LadyDi
  7. Cheechee

    Cheechee New Member

    Yes the asthma meds do tend to make people anxious and I am one of those people. I can say that the newer medications are much better then the ones I took when I was younger. Just one of those things you have to deal with in order to breath. Too bad most newer medications are so expensive, but thats a whole new subject.
  8. polliwog

    polliwog New Member

    Gee CheeChee---I know how you feel. When I was finally diagnosed with Fibromyalgia, I had been to a total of 6 different specialists, and one of them cruely said after all his test that "You don't have any of MY diseases and you don't WANT ANY OF THEM." I started to cry, and asked him what I should do, and he suggested a nurologists. I had started with one of those. So, of course you get depressed. The pain is real, the tiredness is real, the depression is real but you can find help. Not a cure yet, but help! It was finally my general family doctor who diagonised it--even though he doesn't have too much knowledge of it's treatment he is trying to help.

    As for the "shame we feel for LOOKING WELL" I know what you mean. I finally had my doctor give me a handicap card for my car so I could use it to get closer to stores etc. I sometimes feel kind of strange using it, but I have finally come to the mind set that I am truely in pain and have trouble dealing with it, and I deserve to have the pass just as much as someone who "Looks sicker or more crippled than I am." I just smile and go about my business, and know in my heart that this is real and that there will always be those who don't understand it. But, we can and should educate them, and soon they will be on your side with support. Guard your energies and love yourself and think of yourself as the "HEROINE" of a great story. You are NOT lazy! You have a disease that you didn't ask for, that is mysterious to all of us, but that is finally being reasearched and recognized. Think of yourself as "SPECIAL" Love to you and good luck at Mayo! Polliwog
  9. Shirl

    Shirl New Member

    Hi Cheechee, welcome to our world! After you get a definate diagnosis, it will make you feel better that at least they have a name for how you feel! I know that part did help me a great deal.

    As for the guilt thing, try to not let it bother you. You need to focus on your health and not worry about what anyone thinks of you. Your health must come first.

    As for that sleeping, I lived with that horrible problem for all my adult life (I have had Fibro for 20 years now).

    I take 0.25 milligram of Xanax at 6pm, then a supplement called; ZMA by SNAC,at ten pm and a Melatonin (3milligram) right before bed. It took half a life time to find this combination for sleep for me. But this works. You can read/order the two supplements right here at Pro Health, just go to the 'Store' link at the right side(top) of this board and read about them, then ask your doctor.

    HOpe you get some much needed help soon, and again welcome to the group here!

    Shalom, Shirl
  10. clueless

    clueless New Member

    I especially know how you feel tonite. By some quirk of fate I missed my morning meds. The pain started to build up and I did`nt realize I had missed the morning meds. I finally took a break thru pill for pain but it just got so terrible!!!! I found out how much worse my fibro. had gotten thru this happening. It was 10:00 tonite before the pain started to back off. This is such a horrible disease and for people to think we are lazy or slackers is so very unfair. My G.P. does`nt believe in the disease but when he got the report from the rheumy.he acted different. Just maybe he will learn something here.I told him that a doctor told me that the only way a person can believe about the disease is to have it themselves. Too bad we can`t transfer it over for a few days ,we would have new believers. I`m sorry you are having such a bad time. All of us here understand and care very much for your problems. A friend
  11. Sandyz

    Sandyz New Member

    Cheechee,
    Good luck at the Mayo clinic. They`ll take good care of you their. That`s were I found out I had the fibromyalia
    11 years ago. THey have classes about fibro they send you to there if you have it.
    I too, have a hard time with people attitude about this illness that don`t have it.
    one massage therapist i went to said she thought people with Fibromyalgia and Chronic Fatigue were just lazy and need to get a job. That hurt because she could see how horribly tight my muscles were and how bad I was feeling.
    I`ve found some people just are resentful that they have to work and we aren`t. They don`t understand that we would all love to work and have our lives back but are too ill. Ater awhile, you develope a pretty thick skin to protect yourself from all the hurt ful things people say.
    We`re all here for you if you need support.