I'm screaming & crying *Up DATE*

Discussion in 'Fibromyalgia Main Forum' started by babyblues68, Jul 14, 2003.

  1. babyblues68

    babyblues68 New Member

    with frustration right now. My PCP is sending me to a Neurosurgeon. He believes I have pinched nerves that have not showed up on my MRI and CT of the cervical area. My left arm goes numb but I still feel pain...hard to explain. My fingers are numb and tingling. He added perecet to my regular meds for the time being for the breakthru pain in my arm.


    Anyways my frustration is the neurosurgeon's office called this morning to remind me to bring my MRI and CT results tomorrow. She asked if I was coming due to an accident. I told her no and explained my pain issue and I have FM. Well she goes into saying:

    How do you know you have FM?

    "Well because that's what my rhumey said and what my PCP is treating me for after a battery of testing."

    Well you now what they say about FM don't you? It's a catch all when they don't know what's wrong with you.

    "YES..YES most of the medical community believes we're a catch all. I'm very familiar with this opinion. I been to a ton of doctors thru a ton of test and this is where I am...FM. Do you think you can give me a better more percise diagnosis and give me back my life? Because right now it this point in my life I'd do, take, smoke anything just to be me again!"

    Well Mrs. Camp I hope we can help you. I'm sorry you've been thru so much.

    "Just a little word of advice...don't approach a patient that has been diagnosed with FM that they are a catch all. We've heard it before. Your not telling us anything we haven't heard before. We live thru this. We are humans with a very serious problem. Until the medical community believes us and finds the "PERFECT NAME" for this damn pain...I HAVE FIBROMYALGIA!"

    It wasn't a nasty conversation. I was just very strong in speaking to her to let her know I'm not a patient to just will sit there an listen to their opinions and think their right.

    Thanks I needed to get that off my chest.

    Tammy

    ***UPDATE***

    Well I got referred to the wrong neurosurgeon. This one doesn't do injections. So I have to reschdule with another one in his group who also does pain management.

    About the woman who called yesterday from his office. While I was checking out and making another appointment. This womans co worker hung up the phone...turn around and told this woman (that talked down about FM). My daughter was just diagnosied with FM. Well the woman says something to the point...gosh they just diagnoise everyone with that now. At this point she was standing right beside me. I spoke up and said I'm the one who talked to you yesterday...I have FM. So I sat down with her co worker and told her about FM. There just happened to be an artical in the newspaper and a magazine in the waiting room on FM. I got them and they made copies. It showed the trigger points. She said well heck I have it in my elbow. The other woman....well I have pain everyday. I went on to explain one area of pain is mot FM and you have no Idea how it is to live every day in chronic pain. Unless you have it!

    I told them of how it stole my life away. I also made sure they knew it's not so easy to get a diagnosis. They just don't hand it out like candy...heck some doctors don't believe in it. Anyway hopefully the will see this DD in a new light. I did stress to the coworker...believe in your daughter. Sometimes it sound like a lot, but we are in physical pain. It's not in our heads.

    As for the doctor...I asked him what he thought of FM. I caught him off guard. After him kinda studdering. I spoke up and said I have this and if I'm to see a doctor of any type I need to know what side of the fence they are on. He told me he thought to lump all the problems that people have with FM was not good. He thinks there are different forms of it and hopefully one day there will be a more clear diagnosis of this problem of pain that is consuming us today. Heck at least he believe we are in pain and it's not in our heads!

    Tammy




    [This Message was Edited on 07/15/2003]
  2. atrinigyal29

    atrinigyal29 New Member

    Good for you, Tammy!! It's still unbelieveable to me that there are many doctors out there who think that FM is not a real condition. I'm glad you put that person in her place, and you did it ever so politely!! Hats off to you!
    Alicia
  3. pam_d

    pam_d New Member

    Good for you!!!! This made my day, & BTW, I don't think you were being nasty or rude, I think it's acceptable to let someone know that their condescending approach puts people off, rather than welcomes people. Chances are, even if this woman wasn't truly enlightened today, she will think twice before she makes an offhanded comment like that again to a prospective patient. My feeling is, no matter what the patient is being seen for, the nurse or scheduler should offer an air of empathy, not "editorialize" on anyone's particular diagnosis.

    Don't let it ruin your visit there; she is one person there & may not represent the entire office. Also, my past visits to neurologists & neurosurgeons (who were FM non-believers) DID still help me by pinning down the sources of some of my pain, & eased my mind by ruling out other conditions I'd been worried about. So I still considered them successful in part.

    Way to go, Tammy---& let us know what you find out!

    Hugs,
    Pam
  4. Jen F

    Jen F New Member

    Well said.

    More people need to have the same thing said to them...

    J.
  5. lucky

    lucky New Member

    Tammy. I did a similar thing a while ago when I had an appointment with an internist. After mentioning that I have CFS/FMS the receptionist told me that the doctor is not treating these illnesses. Well, I told her in that case I am cancelling the appointment.
    But, a couple of days later I got a phone call from the doctor's office that the doctor really would like to see me. It turned out that she had no clue what CFS/FMS was (she had heard about these illnesses, but.....). Hard to imagine, and during the whole appointment I had to explain and introduce her to these illnesses. She was amazed at how informed I was, and I left her quite a bit of literature as well.
    A nice doctor, but she was of no help!!
    These days I make pretty sure when my family doctor makes appointments for me with specialists that they are familiar with CFS/FMS, the stress I told him every time I see a doctor who has absolutely no clue is just too great, and he agreed.
    I hope a lot more people would be firm and not take any rude comments or let ignorant medical professionals get away with these attitudes.
    Kind regards, Lucky
    [This Message was Edited on 07/14/2003]
  6. endoangel

    endoangel New Member

    I to have been told the same thing until I found the right doc for fibro. I had the same arm pain, numb in the left yet it burned and pained me. I still get the same thing every once in a while and they have done nerve conduction studies but they come back "normal." How can I be in so much pain, not be able to use my arm and nothing come up? What a crock? Medical science is not perfect and they will find something soon if they just pull thier heads out. I am fiesty and a red head to boot. You go girl!
  7. RedB

    RedB New Member

    I wish I had the words to express myself at times like this, instead of tripping all over my tongue! You did great, Tammy!

    Kathy
  8. azcactuslil

    azcactuslil New Member

    You tell them! Can you get a referral to a Rhuematologist?
  9. babyblues68

    babyblues68 New Member

    Kathy,

    I think it has helped me so much from reading this board. The words really just flew out. I called DH and told him. He was very suprised that I stood up for myself, because
    A. I didn't cry
    B. I didn't scream at her

    I just felt a very strong urge to stand up for FM patients.

    I think you guys are making me stronger!




    Lucky,

    WOW...I can't believe she called you back. At least she may acknowledge FM from your knowledge and the litature. Not just dismiss it with other patient's. As a Christian I try to plant seeds of my faith. That's how I think of it with your visit. You planted a seed in the medical community that day. Hopefully it will grow and someone else will benefit from it.



    We'll see how my appointment goes tomorrow.

    Tammy
  10. babyblues68

    babyblues68 New Member

    I was diagnoised by one, but he wouldn't treat my pain with pain meds. I haven't been back since My Internist started treating me for the pain. We agreed if he can't control my pain I'm off to a pain clinic.

    This with my arm is different than my FM. My nerve test results were not good. The only thing is nothing showed up on my MRI's and CT's.

    Tammy
  11. babyblues68

    babyblues68 New Member

    ***UPDATE***

    Well I got referred to the wrong neurosurgeon. This one doesn't do injections. So I have to reschdule with another one in his group who also does pain management.

    About the woman who called yesterday from his office. While I was checking out and making another appointment. This womans co worker hung up the phone...turn around and told this woman (that talked down about FM). My daughter was just diagnosied with FM. Well the woman says something to the point...gosh they just diagnoise everyone with that now. At this point she was standing right beside me. I spoke up and said I'm the one who talked to you yesterday...I have FM. So I sat down with her co worker and told her about FM. There just happened to be an artical in the newspaper and a magazine in the waiting room on FM. I got them and they made copies. It showed the trigger points. She said well heck I have it in my elbow. The other woman....well I have pain everyday. I went on to explain one area of pain is mot FM and you have no Idea how it is to live every day in chronic pain. Unless you have it!

    I told them of how it stole my life away. I also made sure they knew it's not so easy to get a diagnosis. They just don't hand it out like candy...heck some doctors don't believe in it. Anyway hopefully the will see this DD in a new light. I did stress to the coworker...believe in your daughter. Sometimes it sound like a lot, but we are in physical pain. It's not in our heads.

    As for the doctor...I asked him what he thought of FM. I caught him off guard. After him kinda studdering. I spoke up and said I have this and if I'm to see a doctor of any type I need to know what side of the fence they are on. He told me he thought to lump all the problems that people have with FM was not good. He thinks there are different forms of it and hopefully one day there will be a more clear diagnosis of this problem of pain that is consuming us today. Heck at least he believe we are in pain and it's not in our heads!

    Tammy
  12. lucky

    lucky New Member

    This was quite an experience, and I did not do it only for myself but to open doors for others with these illnesses as well. I have from the beginning put my foot down with doctors because I also had one advantage, I was diagnosed many years ago by a very well known CFS doctor who was very respected (she had the illness herself and had to close her practice which was most regrettable) and with the copy of her report I felt safe that not one of them ever mentioned 'it is all in your head' or whatever other excuse they could find. Therefore, I usually was treated fairly.
    Now, if many of us would do the same and either walk out (I have done that too) or tell the doctor that they really are not knowledgeable enough about this illness and just move on, I am sure that after a while, some probably begin to wonder - like this doctor did.
    Thanks for your nice words, Lucky
  13. Jen F

    Jen F New Member

    Yeah, that's just like the docs and my family saying about my CFS, "ya, I'm tired too.." yet they can do 10 times the stuff I can.

    I'm glad you clarified a few things for them. Now can you talk to my family? Oh wait, you have FM, not CFS...nevermind...

    but, glad you spoke up!

    J.