How much worse can doctor referrals get?

Discussion in 'Fibromyalgia Main Forum' started by Joannie, Oct 28, 2002.

  1. Joannie

    Joannie New Member

    I don't know what to do and need to vent some. {SORRY}
    I anxiously awaited a three month wait to see our only Rheumotoligist. {The only one in Iowa} Appt was today. He made it VERY clear that he was only there to help my Family Doctor to do a Clinical Diagnosis for Fibromyalgia. He said he would do the exam and would not change meds or anything else. He did the exam and said I will need other Doctors dictation so I do not need to repeat tests already done. {Dated back in 2000 and Feb. 2001 that is.} He did a quick exam asking questions and not allowing me to answer as if he was speaking out loud to himself. He stated that it appeared that yes I have Fibromyalgia and Chronic Pain syndrome both. But he'd finalize the diagnosis when he received the dictations. Told me to keep doing what I was doing and to remember I could live with the disease or let the disease live and not keep fighting it. I am near tears and was hoping for something to help me cope with this terrible fatigue and pain. My Doctor sent me there because she isn't sure of how to actually treat it. Now we are back to quare one it seems. It seems as if there is no Doctor willing to help me. I have searched the Good Doctors' list and they are so far away from where I live. It is so tiring.
    Thanks for listening just needed to tell someone.
    God Bless,
    Joannie
    [This Message was Edited on 10/28/2002]
  2. Joannie

    Joannie New Member

    I don't know what to do and need to vent some. {SORRY}
    I anxiously awaited a three month wait to see our only Rheumotoligist. {The only one in Iowa} Appt was today. He made it VERY clear that he was only there to help my Family Doctor to do a Clinical Diagnosis for Fibromyalgia. He said he would do the exam and would not change meds or anything else. He did the exam and said I will need other Doctors dictation so I do not need to repeat tests already done. {Dated back in 2000 and Feb. 2001 that is.} He did a quick exam asking questions and not allowing me to answer as if he was speaking out loud to himself. He stated that it appeared that yes I have Fibromyalgia and Chronic Pain syndrome both. But he'd finalize the diagnosis when he received the dictations. Told me to keep doing what I was doing and to remember I could live with the disease or let the disease live and not keep fighting it. I am near tears and was hoping for something to help me cope with this terrible fatigue and pain. My Doctor sent me there because she isn't sure of how to actually treat it. Now we are back to quare one it seems. It seems as if there is no Doctor willing to help me. I have searched the Good Doctors' list and they are so far away from where I live. It is so tiring.
    Thanks for listening just needed to tell someone.
    God Bless,
    Joannie
    [This Message was Edited on 10/28/2002]
  3. Mikie

    Mikie Moderator

    I actually had to go outside my insurance plan and pay for a pain specialist who is very knowledgeable on our illnesses. I have since found out that there is a good doc here in town who treats our illnesses. Rheumies are generally speaking of little value to us except for diagnosis.

    My doc knows nothing about how to treat our illnesses, so I came here are learned all about what was helping others. I did my own research and printed it out for my doc who is very willing to learn. He will go along with most anything which is well documented and not dangerous.

    Don't give up. Call your local hospital(s) to see if they have a specialist or a local support group. The group I visited this month at the hospital appears to be quite well connected with good docs in the area. Also, they are knowledgeable of the latest treatments.

    This board is where I learned about everything I am using to heal. The library is a wealth of info. Good luck to you.

    Love, Mikie
  4. teach6

    teach6 New Member

    I saw a rheumy once. He told me that IF I had FM there wasn't much he could do and that he didn't believe in CFS. I have both. My own doc was being a waste of my time and money so I finally went out of network to an Internist who specializes in CFS and FM.

    The reason he does this is because he had a patient with it and watched her go downhill so far that he vowed he was going to find out as much as possible about treating it. He loves doing research and has now learned so much that he is considered an expert in our area.

    So your doc doesn't have to be really knowledgeable, just willing to learn. You can help by learning as much as possible and sharing what you learn. It's not as easy as just going in and having a doc who has already learned about it, but sometimes it's just as good, or better.

    By the way, I now believe the rheumy I saw just didn't want to get involved in a difficult case that was going to take a lot of time. My treating doc calls mine a complex case. I'm just glad I found him. Check around with local support groups. They will probably have names to offer you.

    I have spent a lot of time learning about what is wrong with me and have made choices about supplements from that knowledge. Unfortunately my pain and NMH, along with pretty bad fatigue, make going off meds not possible at this time.

    Good luck in finding a doc who is willing to treat you and knows how to do it.

    Barbara

  5. Joannie

    Joannie New Member

    I wanted you all to know I appreciate your responses. The sad thing is where I live it seems as if the medical field is not up to date. They do not have a support group for fibromyalgia or for chronic pain. It is really something. We have tons of Doctors' but they are just stuck on treating the people with the easy things and quick to refer you to Mayo {Been there already, don't treat you if your a result of work comp litigation} or some where like that. I too have a big problem with any of the Docotrs' wanting to treat me due to my past medical history a lot of malpractice that none of them have the guts to stand up and help me to fix what has been done. They would prefer to just not treat me period. And they are straight forward in saying that too.
    My Family Doctor is wonderful though. She is the only one with me through it all and I know she will help me through it all. I wonder if sometime she is going to get tired of all of these Doctors' turning their back on me too.
    I thank you all for your advice and I am going to do some of my own research and hopefully I can get somewhere with it.
    God Bless,
    Joannie
  6. TeaBisqit

    TeaBisqit Member

    Try to hang in there. I'm going through a bad doc experience now, too. My really good doctor moved out of state and the one they replaced her with is a nightmare. She doesn't know what she's doing. She doesn't even read my medical file. And her answer for treating CFIDS/FM is to just give antidepressants, like that's going to cure it. She doesn't listen to me and actually talks over me when I speak. I'm moving in a few months, so I can't wait to switch docs. It's sad that there are so few good ones.

    TeaBisqit

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