New here! I was DX, on June 6/03 with FM!

Discussion in 'Fibromyalgia Main Forum' started by milnotgil, Jul 29, 2003.

  1. milnotgil

    milnotgil Guest

    Hello, My name is Mellie. I was DX a few months ago w/ Fibro, but I think I may have had this for a longer time!
    I get so depressed. I use to be so active and always had something going on. Now I can't even keep my dishes washed at times!
    I sleep maybe 2 or 3 hours in the day time. I am up all night! Even when I do try and sleep or doze off I wake up 6 or more times a night!I have just about given up sleeping! I am sooo very tired and my doctor isn't much help. I don't know what to do anymore.
    I have been trying to read as much as I can on FM, I'm trying to understand this disease.
    I know I'm not lazy, just sick. Thank God my family has been very supportive and have read up on this illness too.But that doesn't get me to sleep! I want my life back!
    Sorry for starting my post this way, but this is how I feel. I know I am not alone in this and I hope I can come and vent out my feelings every so often. Thank you and I hope that I get to know all of you wonderful persons.
    I hope I didn't over step my bounds, and you throw me out! Really, this is how I feel. ~*Mellie*~
  2. Annette2

    Annette2 New Member

    It's nice to meet you. You'll find that people here are very friendly and will help you as much as they can. It's still early, but others will introduce themselves and give you advice. It seems to me that you need to find a new doctor. You didn't say what type of doctor he/she is, but it sounds like they don't know enough about FMS to help you. You need to find someone who will address your sleep problems and pain. There is a Good Doctor list here on the Board. Also, if you let us know what area you live in, someone might have a suggestion. You can also deal with this DD by diet - cutting out white flour, sugar, caffeine can help. I've only touched the tip of the iceberg but as I said, others can offer more information!

    Annette2
  3. Mikie

    Mikie Moderator

    I know you have seen a doc who has diagnosed you, but has he or she done anything to help you with sleep? You need a doc who is very knowledgeable in our illnesses and one who is willing to treat your symptoms. Unless you can get some good quality sleep, you will continue to get worse.

    Start looking around for a good doc. If you post here with your location in the title of the post like, "Need A Good Doc In ___________," one or more of our members may have a referral for you.

    You have come to the right place to learn all you can about your illness. As you learn more about treatment options, you can work with your doc to try them. Nothing works for everyone, but there are a lot of treatment options out there.

    Love, Mikie
  4. milnotgil

    milnotgil Guest

    Hi Annette and Mikey,

    Thank you so much for the welcome. I know I need a doctor here in Tucson, but the nearest ones are pretty far away from here! They are all in the state of Ariz.too. I have looked for some already. I have been going to this doctor for 3 years and I really don't think he believed me until I told him to check me for Fibro in June. I had all the symptoms for so long and when I would tell him how I was feeling he would never say anything about it! He has had me on pain meds, for chronic pain for so long, but he would do a drug test on me randomly! You don't know how that made me feel! Maybe he thought I was a junkie! I still have such a hard time getting the meds from him.Why do I feel like I am doing something wrong, by requesting pain pills? The month before last, I didn't get any medication at all. And I called in so many times and I never got them until he asked to see me again! I take them every month and yet everytime I have to call the nurse and tell her what I need and sometimes it takes a few days and sometimes weeks before he will write a prescription for them! I have run out of medication so many times, and they don't care. I am really sick of them treating me as if I am doing something wrong! I have told them I was going to report them, and that's when they get the prescription! But the next month it starts all over again.
    He has sent me to so many doctors and the doctors have done so many tests on me, and all came back negative! Maybe that's why he didn't believe me.And yet he is the one that told me I had this DD. I have always been the one to tell him to check me for this and that.
    Finally when I told him I checked on a website and all the symptoms I had led me to believe I had FM. He knew all along what the symptoms where and never once said anything to me about it., he would just give me a blank stare.and even when he told me I had FM, he never once told me what I could do, he just walked out of the room!

    I haven't slept at all for over 24 hours now, and I feel it. But nothing seems to work and he hasn't put me on anything different either. I am just to tired to fight anymore. Maybe someone can give me some advice on what to do! Right now I need to lay down and sleep a couple of hours. I'm just happy if I could sleep 4 hours stright! so with this I will close. If I repeated myself, I am sorry, but I am almost in a daze right now. I will come back later on, after a few ZZZ's. Thank you so much for replying to my post.~*Mellie*~
  5. inkspo

    inkspo New Member

    We all know what you are going through. The first thing I would do is LQQK for a new DR. One that knows about and understands Fibro. The DR's i have had the most success with are Rheumatologists. The sleep patterns or lack of sleep was the one area i had the most trouble with. I learned the last 3 years, when i don't sleep, don't get aggravated, that causes more stress and stress is one thing you want to avoid if possible. When i wake up and can't go back to sleep I just find something to do until i feel sleepy again. I can not take a lot of medication for sleep as i have bad side affects. So I take Tylenol PM. It does not help me to sleep thru the night but most of the times i am able to go back to sleep after a while and I do not wake up hung over. We can all tell you what works for us,but not everything works for the same people.But having the message board and talking to people who know about Fibro is a big help. The best of luck my friend and hope to see you on the board often....Gentle hugs, Bonnie
  6. Mikie

    Mikie Moderator

    I knew we could count on our members to help here.

    Sweetie, no wonder you are in such pain. You are never getting enough sleep. Pain specialists are very good docs for what ails us, but Packman has given you a very good lead here.

    Follow up and get going ASAP as it makes all the difference once you start getting some real help. Pain clinics and pain docs sometimes ask for a contract which will allow for random drug testing, but they seldome invoke this unless the suspect abuse. Regular docs don't understand addiction issues and are always scared and trying to cover their asses because of pressure from the govt.

    Good specialists are worth their weight in gold. It is possible to get better. Many of us here have. Never believe a doc who says there is nothing more which can be done. You will be amazed at how much you will learn here and it will help you partner up with your new doc(s) to help you get better.

    Love, Mikie
  7. milnotgil

    milnotgil Guest

    Thanks so much for this information! I will look into this.I called the Fibro number here in Tucson, but the list of Doctors they gave me were all either in Scottsdale, Mesa, and as I can barely get around to see my regular doctor, I really don't think I can make it over there.I live way up North in Marana actually. It's 23 miles from Tucson, I guess you know that already. And that River Rd sounds good to me. I just hope they take my insurance.Because doctors are so expensive now a days! Unless I get a referral from my doctor, then I know my insurance will cover it.
    When I signed the contract with my doctor, they did tell me about the random drug testing, I didn't mind, because I am not doing anything wrong! But you would think, that I have complied with everything my doctor has had me do, and I follow up with him every 3 months! And after 3 years, he would trust me! I'm 54 yrs old, for the love of my grand children, why would I want to use something illegal? I don't have time for this,I just want to feel better, and get on with my life. I want the doctor to concentrate on "ME"! so Thank you so much for this info, and I will check it up. Take care *~Mellie*~
  8. milnotgil

    milnotgil Guest

    I want to thank all of you wonderful people for such good info!
    Mikie, you weren't kidding when you said someone would be along and give me some helpful advise!! I am overwhelmed{sp} by this. I think I can safely say I have found a place that I am comfortable with. Even just reading the post, as they are filled with so much info! Once again, I can't thank you enough, this is a wonderful site.Now I need to SLEEP! ~*Mellie*~
  9. Shirl

    Shirl New Member

    Hi Mellie, welcome to our little world here. I see you have already been made to feel like one of the family.

    Just stopped to welcome you, as I must have missed your post eariler today.

    Shalom, Shirl
  10. milnotgil

    milnotgil Guest

    Thank you too. Boy this sure is a friendly site. I really have been made to feel welcomed here! Aww.. you just stopped
    by to welcome me? Thank you! I sure feel like I have been here a long time! I have never gotten so many welcomes in all the times I have posted in websites.
    Thank you again for your warm welcome. I will be here a long time, I hope.~*Mellie*~
  11. cindye

    cindye New Member

    There is a book called "What Your Doctor May Not Tell You About Fibromyalgia" which is very informative and if you can find someone who uses the guai protocol that would be worth a try. It does not help everyone but for others it works wonders. My daughter used that protocol and it actually gave her her life back - as long as she remembers she is not "normal" and curtails her activities.
  12. milnotgil

    milnotgil Guest

    I will see about getting this book. Sounds like something I need! Thanks so much. Is it a hardcover book or just a small paperback?
    Maybe I can find it here at Bookmans or something,because I am going crazy.

    This is the third day that I have not slept [all night], at all! I doze off during the day or I try to take naps, but very unrestful!. Today I really feel it! In 3 day's maybe I have slept maybe total 6 or 7 hours. I feel so bad, and I haven't a clue on what I can do about getting sleep! My days are passing by in a daze. I haven't been able to go anywhere. I really need energy, but don't know how to deal with it! Maybe this book will give me some much needed advice I need. At this point I will try anything.