**SAW PAIN SPECIALIST-- CAN'T BELIEVE THIS!!**

Discussion in 'Fibromyalgia Main Forum' started by CarolK, Jul 20, 2005.

  1. CarolK

    CarolK New Member

    Hi.... I just cannot believe what happened with my "pain management specialist" today. After over an hour of evaluation she basically said.....

    A) Have you tried biofeedback
    B) Have you tired Meditation
    C) " " " Yoga
    D) What about a therepy session with a psycologist
    E) Would you like to discuss your pain with a pain nurse

    F) And my favorite... "I will send my evaluation to your doctor, however, I don't think she will prescribe anything more for you but a new antidepressant..Cymbalta!"

    I have had it with anti-depressants... I hate them and they don't do that much for pain!! I have tried at least five of them over the past 5-6 years.... I ended up tolerating Paxil the best... but then you live your life in a "flat line fog"..... gee that sure is better than taking pain meds!! NOT!! All I have been wanting is something a little stronger for pain than Ultram on the days I have breakthrough pain. Not asking for heroin, or oxycontin, or dalaudid!!! Just maybe some Vicodin!

    I could have fallen off my chair in tears!! I left feeling so hopeless, so depressed..... like NOBODY BELIEVES ME!! Doctors can give you help.... but they won't!! For the past TWO+ years I've been trying to get someone to listen to me and help for the really bad pain... I've spent hundreds of dollars just in doctor appointments.... I THINK I'M GONNA GET SOME POT SEEDS AND START MY OWN CROP!! I've heard of people that are finding great relief from "natural substances"!!

    I COULD JUST CRY!!!!.... what a horrible feeling to feel so bad and knowing that six different doctors basically think that it is ALL IN YOUR STUPID HEAD!!

    Gosh almighty I just cannot believe this. I could tell by the way she described FM ...."well there is no difinative test for it... just symptoms... some drs. in the medical community don't think it is a real disease!"

    I stopped her right there and said ..."WAIT A MINUTE, ARE YOU TELLING ME THAT YOU DO NOT THINK IT EXISTS.... AND THAT IT IS ALL IN MY HEAD??"

    "Oh no" ... she said.... "but it is just a group of symptoms with no known cause".... SHE TIPPED HER HAND ON THAT ONE!!

    SO IN OTHER WORDS... SINCE THERE IS NO KNOWN CAUSE... THEN IT MUST BE IN THE HEADS OF THE PATIENTS! Is what I thought to myself.

    So now I have to wait a week then call my primary care back to see what she recommends after the "pain specialists" evaluation is re-evaluated by my pc. Oh, she did give me an Rx for some super-duper- extra- potent "Ben-Gay" stuff. BIG DEAL!! I'D HAVE TO TAKE A BATH IN THE STUFF FOR IT TO WORK!!

    When she told me that she knows that my primary won't write an Rx for Vicodin.... I asked her if she could recommend a doctor that would... she gave me the name of a different medical group that might have a dr. that would rx for me. GEE THANKS! More co-pays and more run arounds! I have come to the end of my rope with doctors!!!!! This part of Calif. has no caring doctors!

    Oh and one final thing... she asked if I had a support group... I told her about this wonderful Message Board and what a tremendous help it was.... also that my family supports me... and that I had spiritual help from my church. THEN SHE HAD THE NERVE TO SAY THAT... "PRAYER DOESN'T HELP MUCH... PRAYER IS JUST GIVING UP CONTROL RATHER THAN TAKING CONTROL"!! BY THEN I WAS READY TO RIP HER EYEBALLS OUT!!

    I just wanted to vent...thanks for listening to me.. I'm just ready to give up on all doctors... they just take your money and look at you like you are a nut case!! Oh well I guess I will go meditate on my belly button and see if that stops the pain.... or pay a "pain nurse" to listen to me whine.... or go wish on a star... or kiss a frogs belly.... well you get the idea.

    Thanks for letting me vent!!! CarolK

    PS..OH AND ONE LAST INSULT... I HAD TO SIGN A FORM THAT STATED THEY COULD DO AN ON-THE-SPOT URINE TEST FOR ILLEGAL DRUGS!! AND THAT WAS ALSO POSTED ON THE EXAM ROOM DOOR!!

    THEY WON'T GIVE YOU MEDS, BUT THEY WILL POLICE YOU TO SEE IF YOU ARE TAKING ANYTHING ILLEGAL... AND ACCORDING TO HER, THE MOST ILLEGAL THING I WAS DOING WAS PRAYING!! QUICK, CALL THE COPS!!





    [This Message was Edited on 07/20/2005]
  2. abbylee

    abbylee New Member

    Some of these doctors need a good kick in the #@^%$#!!!!

    Ask your doctor if he/she would consider long term treatment using Methadone.

    I am taking 20 mgs in the morning, 20 mgs in the afternoon, and 40 mgs at night.

    It doesn't make me "high," in fact, it gives no "head rush" at all. You can google Methadone and read all about it. If given in strong enough doses, it will help your pain.

    Also, have you had a sleep study? It is important that you find out if you have alpha intrusion. If you do, you need Xyrem. After 6 weeks on Xyrem my pain improve tremendously.


    abbylee
  3. vbrown

    vbrown New Member

    Carol, you sound just like me. I'm glad I read your post though, because I was thinking of going to a pain management center. Don't think so now. All these doctors are the same. I just wish that every last one of them had FM, then maybe they'd change their tune. My primary put me on Cymbalta yesterday, told me to exercise and try to rest more. What gets me is how do you exercise when you're in constant pain and how do you sleep when every muscle in your body is sore and if you turn over you wake up. Wow, they are geniuses!! I've given up. I have been out of work for two months but I guess I'll just have to bite the bullet and go back. Drs. say you can't get disability for something that exists but you don't have lab work to back it up. Well how do the alcoholics and druggies get it? Maybe we should drink ourselves to death and take drugs, then maybe somebody would listen to us!

    Veronica
  4. gravitychallenged

    gravitychallenged New Member

    CarolK,

    I am so sorry that you had to go through such a horrible time.

    I had the exact same kind of experience at a Pain Clinic at a very highly regarded Medical Center nearby. The doctor I saw told me to try the same things that you were told...biofeedback, meditation, yoga, mind/body stuff, behavioral and lifestyle changes, the whole gamut.

    When I asked about medication, especially about Percocet because that was the only thing that had helped me in the past, she had the gall to tell me that not only would they not prescibe narcotics for me but they would only give opiates to someone dying of cancer!!! I ended the session right then and there. I also was told a report would be sent to my doctor. she even asked me if I wanted a follow up visit.

    What gives these people the right to call themselves pain specialists? They haven't got a clue about how to deal with severe or chronic pain. Why can't they realize that by the time we go to see a pain specialist we have tried all those other things?

    Sorry for jumping in on your vent but I just wanted to let you know that you are not the only one that had such a difficult time with pain specialists.

    GC

  5. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    yet another heartbreaking story I've read on this board. Seems the States is almost as bad a place to have the DD as the UK, just minus the GET.

    I'd refuse to take a.d.'s too. If you feel flatlined on them, you obviously don't need them. I wish more people w/ this would refuse to take them, becasue they don't help most of us anyway. It is just another way to make us look neurotic. Look at all those FM/CFSers, they all take antidepressants, see it is in their heads.

    I think you have a great idea to grow your own pot. I'd suggest this to everyone who gets the runaround and is wasting a bunch of money on useless docs anyway. go buy some pot off the street, most people know someone who can get it. If it works, use it, that's what God put it here for, as a useful painkilling herb.


    Jeanne
  6. CarolK

    CarolK New Member

    Hi Ladies... I guess I am not the only one here that has gone through the "horrors of pain doctors"!!

    Abbylee, I never thought about methadone! I'm thinking that absolutely none of my current docs would Rx that... heck, I cannot even get a muscle relaxer from the pc, rheumy or neurologist.... let alone the "pain doctor"!!

    And Veronica... yeah, the "pain doc" encouraged me to do more exercise... sheesh now why didn't I think of that!?!?!? Gads... I can hardly walk... and when I do exercise.. I am down for at least 2 days or more!! I pay for it big time!!

    Gravity.. go right on and vent... I will be glad to share my vent with anyone who wants to jump in!! If I could tolerate alcohol I would drink... but I just cannot handle it.. it makes me hurt all over my body!! But you are right, I would probably get help if I were an alcoholic!

    Thanks for your input... I guess I don't feel so bad and alone knowing that others have had the same problem with these so called "pain specialists"!! YEAH, THEY ARE A PAIN ALRIGHT!!

    THANKS AND BLESSINGS TO YOU ALL.... CAROLK
  7. abbylee

    abbylee New Member

    Regardless of what your doctor will or will not prescribe, you really need a sleep study. Many fms patients have sleep issues - specifically alpha intrusion - that can be treated. Treatment for alpha intrusion will help you tremendously.


    abbylee
  8. CarolK

    CarolK New Member

    HI LADIES... YES I WAS STUNNED WHEN THE PAIN DOC POO-POOED PRAYER!! I find PRAYER AND MY FAITH IN GOD is my first line of defense! I feel bad for the pain doc who doesn't believe in prayer!! Talk about a hopeless person!!

    And thanks for the encouragement Alwayshope!! My hope is in the Lord Jesus... in fact, HE IS MY ONLY HOPE!! I am no longer putting my hope in doctors or medicine!! Perhaps that is what the Lord has been trying to get through to me all these years.... that HE is my only hope!

    But I must admit, today was pretty darn discouraging and it brought on a wave of depression like I have not experienced in a long time. You all know the feeling of..."nobody believes me"!!

    I even had to fill out 3 pages about depression... HECK YEAH I AM DEPRESSED... DEPRESSED OVER THE DOCTORS THAT WON'T LIFT A FINGER TO HELP OR LISTEN OR BELIEVE US!! I AM DEPRESSED CAUSE I CANNOT GET PAIN MEDS TO RELIEVE THE HORRIBLE PAIN! Gee maybe if I O.D. on Tylenol or Advil and had my hubby rush me to the ER they would RX me some pain meds!! Don't worry... not gonna do that!

    Blessings to you ... CarolK
  9. CarolK

    CarolK New Member

    Alpha Intrusion?? How did you get your dr. to do a sleep study?? Or Rx a sleep study?? And what is the medication you are taking to help your sleep problem?? This is all new to me!

    Thanks... CarolK
  10. Dee50

    Dee50 New Member

    I'm so sorry. Your doctors don't know the level of pain you are living with. Don't give up! Make your own plans! Keep trying new things to help with the pain.
    Take care and keep praying.
    Dee 50
  11. CarolK

    CarolK New Member

    Thank you sooooo much... I wish I had you with me in the office today!!! I felt sooooo UNVALIDATED! I was made to feel like a druggie!! She even had me sign a form that stated she could test my urine at any visit!! In fact, it was posted on the door of the exam room!! Like they expected to catch me taking some illegal substance!! YEAH... PRAYER IS THE ILLEGAL SUBSTANCE THESE DAYS!! And she obviously didn't believe in it!!

    I just don't know who to go to now... after years of searching... years of taking lots of drugs that don't work, and basically being their guinnie pig... after years of being turned down by SEVEN DOCTORS (I just did a recount and it is seven)... Well it's hard to not give up!

    If I were not a Christian woman I would wish a case of FM/CFS on each of these doctors... but I must obey the Lords teaching to forgive and pray for those who come against me!

    I guess you know the heartache of not being believed. Now that is what puts a person into depression!! Hurting this bad and having "professionals" look you in the eye and say..."no! sorry... I'm not gonna help you!!"

    Then to have the gall to tell you to just apply some mystic philosophy... or breathing exercise... etc. Then tell you that you are subject to a urine test.... THEY HAVE BECOME THE OFFICIAL DRUG POLICE! FORGET HELPING PEOPLE... LETS PUT ALL THE HURTING PEOPLE BEHIND BARS!

    Well once again, THANK YOU NANJEE FOR YOUR UPLIFTING POST!! THIS IS ONE DISCOURAGED LADY WHO APPRECIATED IT!

    Blessings to you Nanjee!! CarolK
  12. PVLady

    PVLady New Member

    I was in your exact situation a couple of years ago, and wound up ordering Vicodin over the internet.

    It sound shocking to have to resort to ordering your meds online but I was that desperate and sick.

    Eventually I did find a doctor who prescribed a pain med but it took time.

    I guess doctors are afraid when they prescribe Vicodin it just leads to a tolerance of lower doses. I do not believe that everyone who takes Vicodin develops addiction problems.

    I suggest you keep looking for a doctor to help, or you can try ordering Vicodin online.

    There is a website called drugbuyers that attempts to guide you when ordering online.




  13. nanna4550

    nanna4550 New Member

    Your later post was right on. Trust in Him.
    "if God is for us, who can be against us" He is for you, I know you believe that. That doctors attitude about prayer is just ignorant of the power of prayer. Poor thing, she probably has never had a prayer answered, that is so sad.
    I know you have had many answered prayers, and this one will be answered too.
    Don't forget who is in control. "Trust in the Lord with all your heart and lean not on you own understanding but in all things acknowledge Him and He will make your path straight. "
    I will be praying that something good comes out of that doctor visit and you will be blessed by God.
    Love, Nanna
  14. sheried

    sheried New Member

    Thought you might be interested. Take it with you to your pcp appt.

    In the April Fibromyalgia Network's newsletter, they had an article of the rights pain patients have. I will list the seven rights and then give you the web address to read the article in detail.

    1. Pain taken seriously and treated with dignity.

    2. Pain thoroughly assessed and promptly treated.

    3. Be informed by doctor about causes of, and treatments for your pain.

    4. Actively participate in pain care decisions.

    5. Routine assessment of your pain, with therapies adjusted until discomfort is adequately controlled.

    6. Referral to a pain specialist if your pain persists.

    7. Receive prompt answers to your medical questions.

    These points and the article in the newsletter were modified from American Pain Foundation Web site; more details available at www.painfoundation.org (see"APF Publications" page).

    Hope this helps.

    Hugs,
    Sherie
  15. CarolK

    CarolK New Member

    Thanks for your posts!!

    Butzie.. That's a great point... MS as well as a whole host of other disease have had no known cause... including cancer!! Nonetheless, they are valid and well treated diseases. One of these days someone will find the cause and then there will be a widespread validation of FM and CFS and those who suffer from this damned disease!

    PVLady.. thanks for the info on the website!! But how can you go online and get any medication without a prescription?? I have looked at a few sites.. but each one needed a genuine Rx from a physician. Plus they wanted a whole lot more money then a regular pharmacy would charge. So I am back to square one again... I need a legitimate Rx.

    Thanks to you both... and blessings to you... CarolK
  16. LEFTYGG

    LEFTYGG Member

    My pain manage dr offers me pain meds and my pcp offers me everything i have to turn down a lot since im afraid of to many meds. i tale ultracet amien and maxide theyve offered me effexor nuerontin vicodin im afraid of the day when they crack down here i feel so sorry for you
  17. CarolK

    CarolK New Member

    You are so right on!! I know that I need to TRUST IN HIM! I have been hearing that very thought echo in my heart... and even going through this pain is a reminder that we are not in control... but HE alone is in control.

    I appreciate your prayers! This board is such a blessing and it oftentimes is used by God to give us a fresh perspective. So often I hear His voice through simple posts here... and they do uplift me, as does your post.

    One point the pain doc did make... PRAYER DOES MEAN YOU ARE NOT IN CONTROL!!! It is true... I must release control of my life to HIM... when I am weak, He is strong!!

    Thank you and blessings to you Nanna... CarolK
    [This Message was Edited on 07/20/2005]
  18. CarolK

    CarolK New Member

    I will check out that website and the article you mentioned. I sure wish I had these points today!! Of course, I was so caught off guard by this doctor I don't think I would have had the presense of mind to pull that list out and quote it!

    Thanks again and blessings to you!! CarolK
  19. gypsysoul

    gypsysoul New Member

    These Doctors are saving all the pain meds for themselves and family members. Why? Terroist attacks? Just thinking out loud cause something is going on when a Dr is afraid to prescribe painkillers.

    I have other off the wall theories.

    gypsy
  20. bing1012

    bing1012 New Member

    Carol
    i understand your frustation my husband has fm and boy did we go through it with all the idiotic docs. finally our preacher talked to a doc he knew who referred us but something i've heard a lot of people who are having a hard time finding docs are starting to do is asking new docs to do a phone interveiw or even one in person. ask them if they are familiar with fm what they think it is, how they normally treat it and any other concerns you have. it's your right to know what kind of doc. your seeing without having to pay for a visit and go through all that paperwork. if a doc won't do an interview then he doesn't care about your concerns so keep on truckin' till you find a good doc. Have your tried a rhumatologist, a lot of poeple have them treat there fm. Just food for thought
    good luck
    keep smiling
    blessings
    lee ann