how to deal with drs. and family that dont get fabro and the effects of it

Discussion in 'General Health & Wellness' started by carmello1, Jul 4, 2010.

  1. carmello1

    carmello1 New Member

    I WAS JUST DIANOISED WITH FABRO AND NOW MY DR. TREATS ME LIKE AM A DRUG ADDICT, SHE CONTINUE TO GIVE ME THE SAME MEDS AND THE SAME DOSAGE EVERYTIME I GO TO SEE HER.

    THIS LAST TIME I WENT AND I TOLD HER THAT I HAD BEEN DOING SOME RESEARCH SHE BECAME VERY DEFENSIVE AND TOLD ME THAT SHE WOULD NOT BE BULLY INTO GIVING ME ANYTHING OTHER THAT WHAT SHE WAS GIVING ME NOW.

    FABRO HAS CHANGED MY LIFE, FROM BEING A WOMAN THAT WAS ALWAYS ON THE GO AND THAT GAVE OTHER MENTAL SUPPORT TO ONE THAT FEELS LIKE AT ANYTIME AM GOING TO LOOSE MY MIND.

    I HAVE SEVERAL PROUBLEMS BUT THIS FABRO HAS OUT WEIGHT ANYTHING ELES AND I NEED SOME SUPPORT FROM OTHERS THAT KNOWS WHAT IT FEELS LIKE TO LIVE IN CONSTANT CHRONIC PAIN.

    OH YEA WHEN I CALLED MY DR. SOMEONE ANSWERING THE PHONE ASKED MS. GASTON ARE YOU HAVING A FLARE UP? IT TOOK ALL I HAD TO STAY CALM AND KNOW THAT BECAUSE OF KNOWLEDGE SHE HAD NO IDEA.

    I FINALLY HAVE CONVINCED HER TO SEND ME TO A PAIN MANAGEMENT SPECIALISTY IN HOPES OF GETTING A HOLD OF THIS DEASESE.

    WOULD SOMEBODY PLEASE TELL ME HOW THE DEALT AND WHAT IS A PAIN MAN. DR.

    GOD BLESS,
  2. rockgor

    rockgor Well-Known Member

    Welcome to the board. Sorry to hear you have fibro. You may want to visit the fibro-
    myalgia board (on this site). See upper right hand corner.

    Some people are very skeptical about this disease because it does not show up on
    medical tests. I have read, however, that while it does not show up on the standard
    blood tests, it can be documented on other, more expensive tests. It's just that
    doctors don't ordinarily order them.

    You can find information on this in the section above labeled "Research, news and
    articles".

    As for changing people's minds, that is almost impossible in my opinion.

    Good luck,

    Rock
  3. DayByDazey

    DayByDazey New Member

    I had my family Dr refer me to a Rheumatologist. Prescribed Volteran. I told him I'd read about Fibro on Mayoclinic.com & JohnsHopkins.com & other arthritis & Fibro websites. He was impressed. He also prescribed Flexeril once a day at bedtime. This helps with muscle spasms, twitches, & cramping of muscles. The Volteran is helping with inflammation & pain too. I did have to come home early suddenly today with weakness, nausea, & slept 4 hrs. I'm missing too much work because of this. I wish you loads of help! Connie Sue (DaysByDazey)
  4. TwoCatDoctors

    TwoCatDoctors New Member

    I just read an article last week and it was discussing some interesting things about some doctors:

    --doctors that really dislike patients that come into their office and have already researched their ailments on the internet, so they are "informed." I was shocked that any doctor would dislike a patient who has researched and is prepared to intelligently discuss their ailment.

    --doctors that dislike prescribing pain meds out of sheer ignorance or because they fear the patient will not use them correctly or because the doctor will get shadowed by federal/state medical drug panels. I think doctors like this need to change their practice so they never have a need to prescribe pain meds or retire.

    --doctors that, despite medical research and evidence, do not believe certain medical ailments exist, like fibro, depression, etc. I also think those doctors should retire and have lived out their usefulness in society.

    I'm sorry that you were treated poorly. You may want to consider seeing another doctor and retiring this doctor from your care. You want someone who accepts your condition, knows how to treat it, and understands pain and it's management--without having to refer you to a pain management specialist. I don't have Fibro, but I went to a pain management specialist when my back pain was so bad and the Pain Management Specialist did epidurals at the surgery center. They didn't work, but the pain management specialists are probably not the first line of treatment for Fibro treatment. Sometimes they may send you to a physical therapist to see if they can get you moving better without pain. A rheumatologist usually is your doctor that treats Fibro and he/she can treat you and decide if you need further help from there--but they should treat you well and treat you with respect. Call around and see who is on your medical plan that is experienced with treating Fibro cases. Good luck and don't give up.
  5. Janalynn

    Janalynn New Member

    Is this the same Dr. that diagnosed you? If so, then she obviously believes you have it. If not, can you go back to the diagnosing Dr.? If that one doesn't treat, then have that Dr. refer you to someone.

    Unfortunately there are no more expensive tests to diagnose. However Fibro is now not considered a condition diagnosed by exclusion. It has it's own criteria for diagnosis. I agree that you need to see a Dr. who is willing not only to treat you, but to treat you with some respect. Remember, YOU hired this Dr. We often forget that.

    Pain management -That's exactly what they do - they specialize in managing pain. I only went once and the reason I didn't go back was because the doc I saw was only doing what my regular Doctor was doing so my doc continued to treat me.

    Pain management are definitely strict. They will do a urinalysis upfront to make sure that you are not using an illegal drugs and/or using the meds that you are currently prescribed.
    Some do not prescribe narcotics so that's what you want to find out before you go. That can be found out with a phone call. Just tell them that is part of your current treatment plan.

    I really haven't found any Dr.'s that don't "believe" in Fibro. I think it has definitely become more accepted. I have heard of Dr.'s who are not 'up' on treatments or very knowledgable about treatment or the condition itself.

    Good Luck.
  6. hesper

    hesper New Member

    tried to take a pain managment course, could not finish it. But i have the book and a few ideas. If you can take the course do so.Got alot of help from the doctor once figured out what it was , have a talk with your doctor about it if they don't help you or talk find another doctor.. After all the crying (by me of course) and trying every pill the doctors gave me. just started to understand the whole cycle of it. first it hurts to exercise, but then you learn to exercise helps ease the pain. You have no choice to use the pain meds as you start. After a long while you will notice that you can skip one, then maybe two. No promise that you will ever not need anything, just to cut back. Take you vitamins every day. use a body scrubber to help desensitize your body. Then some day you can take a hug from someone once in a while. I must confess i use a sleeping pill and sometimes i use t3 with codine to get some sleep, i was going to say good, but it my good does not mean the same as a normal person. and i am awake early. Use spell check when you type when you need too. ( i do on the big words that i could have spelt so easy back when)some times the easy ones get stuck as well. play bookworm on line, helps keeping th mind active. find a word also. People will treat you different, some do not believe you and never will. those you do not need in your life. some will tolerate you until you start telling what your latest meds are. Unless you have it no one wants to know. You will feel alone sometimes, that happenes to everyone, our tie to normality. One thing i do notice is that we get too wrapped up in it. As an example i have met other people with fibro and they can tell you all about medications (which is good i guess) but they know the latin names for them. that just stuns me. I have to look at the bottle and figure how the heck to pronouce them. Those type kinda scare me. You have to learn to live again, or for the ones that can speak the latin name, then should take up medicine. Your family if you have one, siblings some will make fun of you , even scoff. Your spouse, well they can get tired of hearing it ,don't put pressure on you kids, they need to have lives. But be grateful for them. . Please forgive any typos,(typing is my finger exercie) i check most of my big word spelling with google, and the grammer well it sucks now as well. Best of luck If all else fails find a chat room in the middle of the night and let it out