New to this...

Discussion in 'Fibromyalgia Main Forum' started by DipseyNoodle, Sep 7, 2003.

  1. DipseyNoodle

    DipseyNoodle New Member

    Help! 8 weeks ago I started with severe pain in my chest, neck and back. My doctor was great and sent for for numerous tests to rule out anything serious (stress, heart cath, MRI, CAT Scan, Bone Scan). ALL tests came back fine; however, the pain is still there and has spread. I was to a rheumatologist who said I had Ankylosing Spondylitis (arthritist) and he would see me in 3 months. 3 MONTHS! Well the pain has gotten worse and my family (who is very supportive) took me to a local research hospital emergency room the other night and they said I should do everything to get someone to listen to me about the pain. They were pretty sure it was Fibromyalgia but they could be the one to diagnose. They gave me a shot of Toredol (sp?) and sent me home. Do I call the rheumatologist today and say hey can you re-evaluate me? He is a specialist in FM so why didn't he get it the first visit? I have "tender spots" at my neck, elbows, knees, back. I have been on many, many different medicines but nothing has taken this pain away. I have had it 24/7 for the last 8 weeks. I read most people suffer year(s) until diagnosed with FM, I CAN"T wait that long, or do I have to?

    To tell you how bad I feel; the other night when roming the the house because I couldn't sleep. I had a headache. I went in the kitchen to get some Advil and I stood there with the bottle and thought, maybe if I took the whole bottle it would get rid of this pain. I didn't think this to end my life, just the pain.

    [This Message was Edited on 09/08/2003]
  2. atrinigyal29

    atrinigyal29 New Member

    First of all, I just want to welcome you to the board.
    This is a great site. You can learn a lot here and the people here are very supportive and knowledgeable.

    I'm so sorry that you are in so much pain. If I were you, I would try to make another appointment with the rheumy. I would tell him how much pain you are in and about any other symptoms you are experiencing including the insomnia and the tender points. Also, let him know that you went to the emergency room and they thought that you may have FM.

    It does seem strange, however, that he told you to come back in three months. Usually, if you are a new patient, then the doctor would see you in about a month or even in two weeks or so to see whether the meds are working for you. If you don't feel comfortable with that rheumy, then I would try to find another one, who has knowledge about and experience working with FM patients. If you don't know of any in your area then you can post a message on this board to find out about good doctors in your area.

    Well, I hope you find relief and find a great doctor soon. Take care and let us know how you are doing.
  3. MiahRoo

    MiahRoo New Member

    Well even if that rheumy is a 'specialist' with FM he still may not be a great doctor. There are far too many bad docs out there to be sure. My advice is to see a few docs. A neuro could be great, a different rheumy or two. I saw dozens upon dozens of doctors for years and years before I finally got a diagnoses and only then because my soon to be mother in law has FMS and sent me to some docs that she knew!

    Educate yourself. That is the MOST important thing to do right now. Learn everything you possibly can about what you think may be going on with your body. And don't be afraid to USE that knowledge when you are with a doctor. There IS help out there...sometimes it just takes a while to find it. If you're having really bad pain outbreaks before you get a diagnoses or a good doc..just go into an ER for pain management. Most of the time they'll give you something for the pain and a script of something or another to take home. Do what you can to cope until the right help is there for you. Best of luck to you. You'll be in my thoughts. ~Miah~
  4. DipseyNoodle

    DipseyNoodle New Member

    I have another appointment with the rheumatologist on Wed AM. So do I go in prepared with all the information I have found on FM afraid that he will say I have the symptoms because I read about them? I'm so afraid no one will understand what I'm going thru. I'm afraid! I never have felt this way before.

    Crying inside,
  5. tandy

    tandy New Member

    Welcome!! I would tell your Dr. on wednesday that you read something on fibromyalgia and you feel you have all the symptoms or many of them.And see what he says~ If he does'nt even acknowledge your question or just blows it off...I would for sure go for a second opinion!! And a Neurologist would be someone to think about. I've had FM for 11 yrs now and have gotten worse over the yrs....mostly due to poor pain managment. I asked for a referral recently to a pain clinic and a Neuro. I'm waiting on those appointments now.With a little luck i'm hoping to get some control over this daily pain and my life again~ The neverending pain is what gets to you after awhile.IF it came for 3 days then left for 10, I'd be ok with it!!>LOL but this everyday stuff is maddening.
    It took many of us a couple years for a DX.It took me 5 different drs. and 2 yrs. hang in there....once you know, you can hopefully find a dr. who's familiar with FM and will treat your pain~ Wishing you all the luck!! take care :) please let us know ok?
  6. DipseyNoodle

    DipseyNoodle New Member

    Are these all part of FM?

    Dry mouth, I can't seem to get rid of this. I'm drinking water all the time.

    My stomach hurts, I don't mean like a stomach ache. More like I have a big ballon inside putting pressure on everything inside. I feel like I'm 9 months pregnant.

    It hurts to sit on a hard chair. The bones feel like they are on fire.

    Constant headache. I don't know what to take because I'm on so much pain medicine. Why can't the pain medicine take care of the headache?

    My arms are dead weights. I'm putting a puzzle together to pass time and I can hardly pick up the pieces sometimes. Where has my coordination gone?

    Many, many more, but these just seemed more odd than the muscle and joint pains.

  7. atrinigyal29

    atrinigyal29 New Member

    I have dry mouth all the time and constantly drink water. I also get headaches, and sometimes I feel like I'm on fire..My muscles also feel very heavy and stiff too. I don't experience the stomach pains though, but this condition affects people in different ways.
  8. hope-floats

    hope-floats New Member

    What you're describing are some of the symptoms of FM. They could also be symptoms of other things that make you feel the same way such as hypothyroid. It's always good to have a doc that is thorough in his evaluation and assessment of you. He probably did extensive blood work...was there anything there that was off balance?

    If it were me, I'd tell him that I ended up in the ER due to umbearable chronic and dibilating pain. Let him know that when you described your symptoms, staff felt you might have FM, and you want to discuss that possibility in detail.

    Good luck to you.
    [This Message was Edited on 09/09/2003]