I'm really struggling

Discussion in 'Fibromyalgia Main Forum' started by ritatheresa, Mar 13, 2006.

  1. ritatheresa

    ritatheresa New Member

    Ok, I'm not even sure where to start.

    Basically I feel like I am being completely mismanaged by my doctors. I am having some really bad symptoms and nobody seems to think anything of it.

    I am ready to throw the towel in. The worst symptoms are the stiffness in my neck and wrist. I've recently been told I have mastoiditis and was put on a 10 day course of antibiotic. The ENT doctor said it's probably "Old"

    My labs are completely out of whack, I'm sitting here freezing but dripping with sweat.

    Really what my question is I would really like to go be treated elsewhere. I live in Staten Island so I'm going to go to Manhattan. I'm just not sure where to start.

    I know Columbia University has an urgicare center which is kind of what my game plan is.

    Should I bring all my labs and tests with me or just go in and tell them my symptoms? I'm so sick of not being taken seriously. I certainly will not tell them of my Fibromyalgia diagnosis, that seems to send people running.

    Does anyone have any suggestions? Am I being silly. I really feel like something bad is going on. I've always been taught to listen to your gut but I just don't know what to do anymore.

    I'm feeling very overwhelmed and helpless. Should I go or just continue to be dismissed and learn to live with this?
    Please help, Ritatheresa
  2. NyroFan

    NyroFan New Member

    Ritatheresa:
    What was funny is that when I saw 'Statan Island' the first place I thought of was Columbia Presb. And then I saw that is where you were planning on going. I would go with tests in hand, tell them I have fibromyalgia and am in extreme pain and need a doctor who can follow me long term.
    (Just what I would do). And you have picked a wonderful hospital.
    Hugs,
    NyroFan
  3. erfula1

    erfula1 New Member

    This condition is very frustrating. You mentioned you are sweating while freezing. Are you on medication now? The reason that I ask is because I had a problem with sweating profusely while everyone else would be cold. I had my horomones checked and they were fine. I am only 32 (30at the time) so I didn't think I was going through the change. It was very embarrasing.

    Before I get into what it was I'll give you a little background about myself. I was hurt at work in 2001. I hurt my lower back, messed up 2 discs and was treated for it. But it wasn't just my back that hurt. I was hurting all over!!!! The Dr I saw for my back didn't care about my other pain and he discharged me from his practice saying that I had reached maximum medical improvement and he couldn't help me anymore. He didn't even try to figure out what was wrong with me. For over a year I just went on suffering. Then I went to a Dr that finally diagnosed what I had. I had 15 out of 18 bad pressure points. Well to make a long story shorter I had insurance problems and had to quit seeing him. Then I lost my job. I got TennCare and started seeing Drs again and I was put on 12 different meds. I don't even know when the sweating problem began but I also had heart palpatations and my heart would race. I would have red blotches come up on my arms and neck and none of the Drs could figure it out. I went to a rhuematologist because they are supposed to be the best informed about FM and he told me that not alot was known about FM but that alot of Drs believed that it was a pyschological disorder and asked if I had seen a pyschiatrist. That was the last straw for me. I took myself off all the meds and stopped seeing any Drs.
    I still deal with pain. I hurt every second of every day. It goes from "background noise" to in-your-face screaming. But I don't have a racing, palpating heart. I don't have sweating hot flashes. The red patches have gone away.
    I take alot of supplements and I try to watch what I eat although right now I am off that wagon. I know that sugar is my worse enemy with pain but I have heard others say they can't eat red meat.
    I do plan on getting treatment again but this time around I know what questions to ask and I will find out beforehand what treatment they plan to offer before I take the first prescription. Ask questions and if you don't like the answers move on. Treat it like a reverse job interview. This is your life and your health you are putting in their hands.
    Good luck to you and let us know how it goes.
  4. cynny3

    cynny3 New Member

    Hi Ritatheresa,

    So sorry you're not getting the good care you deserve. FM is so misunderstood and most of us have spent years looking for the right care. My suggestion is to find a hormone specialist/Endocrinologist who understands Fibromyalgia.

    FM almost always has a hormone/thyroid component and it wasn't until I found a doctor that understood this that I started feeling better.

    I am also originally from New York City (live in LA now) and not to say there aren't any good doctors in New York, but I always found doctors to be too much in a rush there to pay enough attention to my specific issues.

    Please keep looking for the right person. Someone who really understands and validates FM as a real health disorder and wants to help you.

    I hope you feel better soon and in the meantime, we're all here to support you!

    Cynthia
  5. spiritsky

    spiritsky Member

    Rita,

    I would get your hormone levels checked by someone who is competent in dealing with FMS and hormone issues. My wife has FMS and had a similar symptom of not being able to turn her head without pain...this went on for about 2 years without any relief. No Chiro or acupunture worked for her. But when she finally went to see my FFC doctor she was prescibed hormone replacement. Not directly for her neck but it seems that taking the horomones got rid of her neck problem. It was an unexpected surprise. Not sure if it will help for you but it's something to look into.

    And although your relatively your, you still could have problems with estrogen and progesterone. It's not unheard of that a women starts already having issues in her 30's.

    Good luck...
  6. Cromwell

    Cromwell New Member

    After having a PA call me an enigma(meaning hypochondriac) yesterday whilst holding all the tests that show how ill I am I sympathise.

    I am going to go back with Guthrie as they have some good people who are INternists. So try again. I am.

    Love Anne C
  7. ritatheresa

    ritatheresa New Member

    I really appreciate it, I actually have gone to an endocrinologist and my TSH significantly went up since 5/05 from 0.95 to 4.45, my Dr was like whoa, he wants me to take alvidar (thyroid supplementation) my female hormones were on the low side so he said to take a supplements, the worst one was the carnitine, mine was 18 (normal 42-81), he also requested a supplement for that and said that could absolutely be responsible for fatigue. My BUN/Creatinine had always tested normal now it's 2.9 (normal 6.0-25) and my urea nitrogen 2 (normal 7-25). Nobody seems to think anything of it.

    I must say something I guess you can say funny, when the labs were checked I was put down as being male, so firstoff my female hormones where skyrocketing and my male hormones were critically low. I'm a woman!!! The doctor got a good laugh out of that.

    I'm just tired of being pushed aside. I certainly do not go to the Dr demanding they sit with me for an hour, but come on talk to me please, explain to me. Basically the answers I get are live with it. I just think it's wrong.

    So my plan for tomorrow is to go to the city and pray I get treated like a human being. I know I need to accept I have a chronic disease (and it isn't always easy), but when you feel like it's something more you have every right to be heard, or at least that's what I used to think.
    UGH!! I will let you know what happens, Ritatheresa
  8. erfula1

    erfula1 New Member

    http://www.co-cure.org/Good-Doc.htm

    It is a FM/CFS Good Dr list. hope it helps.
  9. ritatheresa

    ritatheresa New Member

    You guys are great. I don't know what I'd do without these boards, God bless, Ritatheresa
  10. lovethesun

    lovethesun New Member

    When I was in Tennessee ,I had great luck with the Doctors there.A neurologist there is the one who diagnosed me.Linda