Compassion....where did it go?

Discussion in 'Fibromyalgia Main Forum' started by MelG, Jan 9, 2003.

  1. MelG

    MelG New Member

    So neuro. (who unfortunately is a complete a**) won't talk on the phone because it interrupts his schedule and said that the Copaxone should be enough and that chronic pain of any kind should be dealt with by a pain specialist.

    This is unbelievable. I have read the same story over and over again on MSWatch. People (primarily women) are told they have FM or CFIDS or something else, later to find they have been misdiagnosed.

    They wouldn't let an animal stay like this. My health insurance company said that I should get a cain, or two, so that I don't keep falling.

    I have an appt. on the 7th with a female neuro.

    My good friend, who happens to be a nurse, has had women go through this time after time.

    Do these God like men neurologists think this is all just Hysterical Women Syndrome?

  2. Mikie

    Mikie Moderator

    I have heard time and time again that the neuros are the most difficult to work with. Some rheumies can be difficult as well.

    When one finds a good doc, he or she is worth his or her weight in gold.

    Love, Mikie
  3. Sunshyne1027

    Sunshyne1027 New Member

    My family doc at first wouldnt really deal with the the FM. Lately he has though, it seems once I took on the initiative to help myself a little more, like taking on water aquatics, going to the Arthritis foundation and then help with vocational rehab. So sometimes a doc that dont feel so right at first, is a actual good doc. I dont is in my case. I take literature to him to read too, that helps.

    I have learned that most docs will go as far up in meds to like tylenol 4's or vicodins. So yes, going to a pain management clinic would be a good choice, sometimes the only path to go. I set a appointment for a pain clinic, and they cant get me in until 2 months from now. I look forward to it though.

    I wish I knew why the rheumys and the neuros act like this, not all do I am sure.
  4. Kimba

    Kimba New Member

    I have been in Pain for 12 years and have different pain killers for that long. I found that not matter the doctor, except in a few cases, I did better when I came in and knew what I was talking about and demanded (nicely) the amount of pain killer that I needed. If what they gave me did not work in three days, I would call and get something stronger.

    Right now I have two doctors and one therapsit working with me to get me back on my feet. (I have trouble with my ankles)

    You know what is wrong with you. Get a copy of the paitience bill of rights and bring it with you. Demand stronger pain medician. If the pills don't work, call in and get strong ones. If he won't talk to you, talk to his nurse. She is often you best hope and lifeline to the doctor. If that does not work start calling the office every hour. Trust me someone will talk to you. You have the right to be out of pain and you should not spend a month in pain waiting for another doctor to tell you that.

    Be professional, Be polite, Be firm but demand your right to be free pain. Tell them that what you are on is not working and you need something better.

    HURTSALOT2 New Member

    Hi MelG, I have canceled my next visit to my neuro and will never see him again. One day I called feeling sooooooooooo bad and what and how he said this to me has caused me not to want to see him ever. I felt he was very rude and gave me the impression that I was bothering him. He said to me, you are not dying! First of all, I did not tell him I felt like I was dying. Second, I was not rude to him so why should he be rude toward me. Needless to say I am finished with him!!!

    And my insurance company are a pain too. They called yesterday. They call me every 2 weeks to check on my progress. I told them yesterday I do not feel any better yet. They ask if I still go lie down during the coarse of the day. Hell yes I do. When you cannot hold your head up any longer what would you do? He told me that I need to fight those urges to go lie down and to fight the pain I get in my shoulders and neck. To make myself stay up and tell myself that I am not in pain. Hello, been there done that. It has not worked, although I do try it now and then.
    Anyway, just thought I would let you know that I share the problems you have with doctors and insurance. Take care.
    [This Message was Edited on 01/10/2003]
  6. 1maqt

    1maqt New Member

    The "compassion" is here with friends who understand, and have been there.....It is so humilliatiing to have someone disregard your needs and feelings. It is called insensitive!

    Unfortunately this is not isolated to the med, field, and runs through human nature it's self. I haave had FMS for 28 yrs, and believe me I know humiliation.

    I have lost my aability to write as I did even 10 yrs ago.
    My fingers stick on the letters when I am typing, and I have dyslexia. Just Two of the things I have been robbed of.

    For years, I had to contend with my husbands disbelief, and anger because I couldn't keep up. We had 6 children, and 5
    loads of laundry a day.Finally he began to see the dibilatation I was suffering, and things got better. Then
    we have to dal with the doctors who see someone with that many children, and they look at you like you had some fatally contagious desease.

    We have to find peace and harmony within, because without it, we are wasting prescious energy, and we have non to spare. Believe in your self, and seek all the information you can find on your illness. Read, read, untill you are
    aable to converse intellegently with the DR, and they will take you more seriously.(Some)

    The Library on this site is incredable! The people on this Board are very kind and willing to share. Read as many posts as you can, and get to know the people here. It will all get you to where you want to be, which is to heal your body. Read Madwolf's Post on "embracing your Illness", it is really good.

    Ask questions, and we will try to answer. The feelings of isolation were the worst for me, plus people looking at you and saying,"But you look so good"......The pits!!

    Hope to incourage you........1maqt
  7. pam_d

    pam_d New Member

    ....And reacted no differently than your male neuro! She was valuable to me for running MRIs, etc. to eliminate things like MS, lime disease, etc. and actually not an awful person (is there a compliment in there somewhere??)-----but she DID NOT "believe" in FM, and definitely looked at me like I was crazy! Luckily, she finally passed me on---in exasperation---to a rheumy who dx'd me. But I'm grateful I went to this neuro as a place to start, since my symptoms were mostly neurological, especially at the beginning. She did valuable testwork, setting my mind at ease about some other concerns I had. But no bedside manner or understanding here...despite her gender...

  8. Combatmedic

    Combatmedic New Member

    I can say that he is VERY professional, as far as montioring me for MS since the first (and only) brain lesion appeared last April. When I first went to him, he lectured me about how my pain medication (Lortab 7.5) was BAD for my headaches (???) gave me some schpeal about how everyone should have AT LEAST 3 days a week OFF pain medication or you will get "rebound" headaches----I never did, and Lortab helped my headaches greatly, along with all my other pain. Ultram made them worse along with nausea and jaw clenching.

    This is, however, the same guy, who at my last appt, layed out my options for me (sit and wait, go to a specialist in Indy, or start an ABC----without a diagnosis) He did say that he would not recommend an ABC, as it will only make me sicker---but, I thought, Hmmmm, he won't do ANYTHING (but Zanaflex which I cannot tolerate,) and increase my Trileptal for pain, yet, he told me I could start Avonex, Copaxone, or Betaseron without an MS diagnosis???????

    Doesn't make sense to me.

    (p.s. in case you wondered, I had a 7mm lesion in the corpus callosum. AKA left frontal lobe)
    I will be 25 in a few days, and, from my understanding, my chances are pretty high, that I WILL develop MS w/in the next 5-10 yrs??? If you can clue me in on this at all, I would be happy to hear your opinion.

    I have not had ANY luck with rheumy's either. My family doc (a woman) is the most compassionate (her sister has MS), unfortunately, she openly admits that she has no clue how to help me. She is the only one however to give me pain medication.

    I'm not on any pain meds right now, and suprisingly, my neuro is as friendly as can be, he treats me as if we are "on the same" level. Even called me an intelligent young woman.

    Good luck, I hope you aren't suffering too much.

  9. lucky

    lucky New Member

    When I asked my family doctor a couple of years ago to send me to a neurologist or rheumy - he refused - the reason - they are the last ones to recognize your illness. It seems nothing has changed much since then, and I spared myself a lot of frustration/rejection/anger by not going and probably I would not be dealing with CFS/FMS as well as I do, due to the good care my doctor is providing for me.
    I wish you all the best, Lucky
    [This Message was Edited on 01/10/2003]