My Dr. insinuated I am a "drug-seeker"

Discussion in 'Fibromyalgia Main Forum' started by Flaxen, Oct 11, 2005.

  1. Flaxen

    Flaxen New Member

    I have been in constant pain for 51/2 weeks..the flare from hell..no one can find anything wrong on the blood tests..it's "just" fibro.Ha!!! My life has been miserable since I had my colonoscopy and that is the only trigger I can think of...My MD keeps giving me anti-depressants..I already take a low dose of elavil for chronic pain and sleep and it has not ben working.He gave me 5 Vicodin 2 weeks ago..it helped but he didn't want to give me any more...now I am tapering off prednisone(it did help) and the pain is coming back.He wants me to stay on it(which is more dangerous,steroids or pain pills) Whenever I tell him how badly I hurt he makes references to "psychological issues,bla,bla,bla.........I am so frustrated(I know you all understand) Can't get a decent diagnosis and I am hurting all the time.New rheumy said tests reveal nothing abnormal except Epstein-Barr..would a flare for 5weeeks be due to a virus? I can't take it anymore..I feel like no one cares or understandxs..I don't know how you all cope..Sorry for the long vent but I am feaking out..NEVER had a flare this long and don't know why..Thanks,S
  2. CatsKimber

    CatsKimber New Member

    ... it's exactly the same for me. what a nightmare, huh?
  3. Flaxen

    Flaxen New Member

    Is it better to suffer everyday than to dependent on pain meds?..what qualiy of life do you have off them.?.I cannot cope wwith constant pain anymore.Best of luck finding an understanding Dr.I do want drugs..so what..I hurt so bad it has affected every area of my life...work 1 day a week(wow) just to get out of the house and keep my sanity.I know others have it worse..just wish I could find a Dr. who truly understands.Flax.
  4. orachel

    orachel New Member

    1st of all, you are absolutely not alone in this! LOL I wish we didn't have to deal with this nonsense, but we do. Unfortunately there are druggies and junkies out there who have made pain management a living hell for those of us truly suffering. The antiquated notion about not using pain meds to treat fm/cfids/mps doesn't help either. Their concept is that because it is a chronic condition, and does ebb and flo in severity, that all they'd be doing is creating a bunch of addicts.

    First....I believe (and theres a good chunk of medical evidence I've come across that supports this) that it is flat out impossible for the type of pain levels I'm in (7-9...and that's while resting and doing almost nothing.)it is flat out physically impossible to become "addicted" to pain meds....Addiction here is in the sense of "junkie" drug seeking behavior. Of course, any long term course of narcotics brings some level of dependence, but dependence and addiction are 2 totally different things.

    Second, I believe that I am entitled, as a human being with a chronic health condition (or 12....not done diagnosing me yet!) that I am entitled to enough pain medication to provide me with SOME ACCEPTABLE STANDARD OF LIFE. We're talking inhumane behavior from some of these docs! I understand that narcotic meds are not called for for all of us....I wish to goodness the 400mg of ultram I'm taking (among many others...no narcotics though) helped in the slightest bit with my pain, but it literally barely touches it on my good days....on my bad days, I can't even tell the difference before and after I've taken it!

    Constant teeth grinding pain to the point where it distracts you from every single minor task you attempt (cannot wash myself sometimes, for crying out loud! LOL) does nothing but further strain the body physically. I don't know abt you, but even with every "non medical" solution to pain (visualization, meditation...prayer) I've had virtually CONSTANT excruciating pain for over 4 months. Its changed my personality, truly! I'm snapping at my husband, and it is physically and emotionally draining.

    A few weeks ago even, I had come to some great level of understanding that even if I have to suffer with this for the rest of my life, it is possible for me to be an asset to this world in my own way. I was feeling pretty dang positive for a 30yr old who may never feel "good" again....can't work (and have ALWAYS defined myself by my success in my profession), may not ever be able to have children.....I was feeling pretty dang well adjusted.

    But the longer the pain goes on unrelenting and untreated, I cannot hold on to the positive. I wouldn't say I'm "depressed" at this point....I'm more righteously ticked off!!! I just don't think its right that we who have never had a history of any sort of drug abuse would be viewed as potential abusers of medicines that allow us nothing more than to have a SLIGHTLY HIGHER STANDARD OF LIFE!!!

    I want to rail at the standard "fm protocol" docs, and say "hey you! What's worse...a 30 yr old woman who takes narcotic pain meds for breakthru pain only as needed, logs them, and has a contract to use drugs in correct manner for pain relief...sure maybe become dependent over time, but that's why god invented pill cutters....you simply gradually reduce dose to prevent body from trauma of "detoxing"...there are new drugs every day that work in different ways...its not like 20 years ago when there were only a few pain relief options, and you just had to keep increasing dose after dose...theres many more options to choose from now! Pain relief allows some semblance of normalcy. Occasionally even able to attend a movie with her family, or bear the 2 hour drive to see my in laws, or be able to focus to read and research and participate fully in my own recovery. Hey, might even be able to stick laptop on my lap while reclining and try my hand at writing a bit of schtuff to help other women go thru this life altering diagnosis. Have a bit of energy and endurance as its not fully sapped by terrible pain, so can occasionally shop and prepare healthy whole food meals for myself and explore other theraputic options that may be beneficial, but that I just could not tolerate with severe pain levels before meds...

    Or, would you prefer a 30 yr old woman who was an active professional member of society, tried to be a wonderful stepmother to 3 beautiful children, a newlywed to the man of my dreams, just bought dream home and really just starting our life together......now 4 mos later, pain so extreme I cannot drive! I cannot bring myself to eat much of the time because of the nausea of pain! I'm practically housebound, and cannot interact with my family in any other than the most passive ways...and that's when it doesn't hurt so dang bad that I have to hide in my bedroom because I don't want to terrify my kids and traumatize my husband to see me crying or rocking or gritting my teeth in pain.....


    WHICH OF THOSE 2 IS THE HEALTHIEST LIFE????!!!
    WHICH OF THOSE 2 PEOPLE HAS THE MOST TO CONTRIBUTE TO HER FAMILY, SOCIETY AND HER OWN WELLNESS???

    I so hear where you're coming from, flaxen.....I've been treated like a loon for even suggesting that its a bit unreasonable that I've had to suffer unrelentingly for 4 mos...and while I used to have a pretty low pain tolerance, its gone way up...but I am still flat out virtually non functional in any way 90% of the time. I've been treated like a drug seeker, and recently because the pain almost has me so FRANTIC for relief, I've been asked to see a psychaitrist. Fine...no probs with that. I'm hoping a competent psychiatrist sees that my only severe problem here aside from lifestyle adjustment to this diagnosis that flipped my world upside down is that my pain isn't adequately managed...and they have the ability to prescribe, so maybe that will be good.

    In 4 mos, I've had 2 docs that originally treated me well totally turn on me in the sense that they didn't understand why I'm not willing to "lay stagnant" for 2 years or so while they finally come up with something that might benefit me....Sorry guys....this is my life, and my family and I owe more to myself and the people I love than to become a depressed vegetable because I cannot endure the ridiculous levels of pain I'm in for years on end.

    That's no life...that's an existance...theres' a big difference.

    Boy! Wrote a book here! But this is something that I'm just dying to figure out! I want to see a doc who understands where I'm coming from, and is giving me the treatments that they are confident will be the most helpful, but who understands that there can be no healing with pain so severe that your entire body is constantly held rigid with pain! LOL That's part of the problem in the 1st place!

    I'm still hunting for a new doctor....I know there's one out there....my attorney made some suggestions, but the big thing I realized is that if you know that your only solution at this point is pain relief before you can move forward in a strong and participating way in your own recovery, then the thing to do is find out what "protocol" the doctor follows for treatment of FM etc. If they follow the standard AMA guidelines, they specify no narcotics, period....they are more outdated than the federal govt with respect to fm/cfids/mps...

    Its a horrific thing that none of us should have to go thru. These doctors never saw me in my professional garb, ready to take on the world...I walk in and they see a sick and tired woman who's barely got the strength to move or breathe most of the time.... And guess what? They made me that way. I'm not asking for no pain...that would be ridiculous, and quite frankly, I hate the "altered" feeling some narcotics bring. But a bit of relief when you just cannot stand another minute of extreme pain? I think refusing that is literally a break in the hypocratic oath..."first do no harm". That's my opinion. But I can absolutely attest to the fact that my mental state and level of patience and endurance has gone downhill with each week of horrific pain I've suffered. Whose fault is that?

    Cause it sure as heck isn't mine. I've done every therapy they've suggested...and let me tell you many of them made pain much much worse. I simply feel that my care with my current doctors is "maintenance"...they clearly aren't concerned with my quality of life outside of their office. They just want me out of their office as soon as possible.

    No wonder so many of us become totally paranoid about doctors. There are some amazing ones out there. I just wish that there was some sort of requirement that they had to spend x number of hours per month studying current research in order to treat us.....their antiquated methods are literally draining the lifeblood right out of this girl! LOL

    But I will find a good doctor...Its just going to take every single bit of energy I have to do it over the next few weeks. I feel awful, because I've done this before, and that small amount of "aware" time I have should be spent with my family and my loved ones...but if I ever want to be treated like a "human being" with rights to a life, then clearly ain't nobody going to fight for it but me!

    Read Devin Starlanyl's book Fibromyalgia Advocate...was quite inspiring, and gives very very clear ways to find out without wasting any time whether your doctor will be prepared to "medicate" you as needed so you have the greatest chance to participate in your own wellness.

    And btw...a surgery is a very common precurser to onset of a disorder like this.

    Whew! Sorry so much info, but as you can see I feel very very strongly about this. And as of yet, I haven't achieved any level of relief. I'm determined to play within their rules...can not even imagine having to do something like buy street drugs....I would never be able to do such a thing and live with myself. But somehow I find myself a bit less judgemental of those who do end up with addiction problems from self medicating for a chronic pain condition. I think the incredible restrictions on them (monitor, yes...of course...but give reasonable meds for reasonable pain!) has just led to increase of desperate depressed people suffering daily with no relief. That's good for noone, society, their family....noone.

    Hugs, and I sure hope that you get some relief. Another possibility for you since you did well on the prednisone (I didn't) might be "trigger point shots" of a pain cocktail....they're supposed to last about 3 mos in your worst areas of pain (they didn't work on me either...but just like prednisone....if you had luck with one, you might have luck with the other?)

    Good luck!
    Rachel

  5. Yucca13

    Yucca13 Member

    It is truly awful to be "beside yourself with pain". If your doctor wonders about psychological issues, well unrelenting pain can Cause some very real issues.

    Many people who have had Epstein-Barr eventually have CFS. Flares for me can last for a long time and I don't usually know the cause. My doctor is treating me for myofascial pain syndrome along with the fibro and some of the treatments will start a flare. I have strong pain medication, but when I'm in a flare, I still feel awful and have to push myself to do anything. It seems like it wouldn't be risking addiction to give you a few more choices when it comes to pain. People in pain with adequate pain control are much more able to function.

    Some pain treatment doctors will treat people with "just" fibro so if that is an option for you, I would definitely check it out.
    Hope you feel better soon.
  6. LollieBoo

    LollieBoo New Member

    You are so right- I have been in consistent pain since the end of July. It is so bad, I cannot think straight. I tried every non-pharmaceutical approach I could before relenting to trying Tramadol. It was great, until the flare intensified. I was so reluctant to take the leap to opiates, for fear of being "dopey", until I realized how many days I was spending in bed due to unrelenting pain!

    Thankfully, I have an understanding doc (at one point I saw a doc who accused me of drug-seeking, just b/c I mentioned pain. I'd been nauseous from pain so long, all I'd wanted was an IV- fluids! Never went back there!); he gave me a script that helped sometimes, but not at others. So he stepped it up (his idea). This weekend, in the middle of an intense flare, I was able to go outside and enjoy my children enjoying fall. I was not 100%- I still had a headache and shoulder pain; muscle spasms- but I wasn't in bed missing it all!

    It took me being willing to see it as you do, as far as the "which is worse?" being incapacitated by pain, or doped up on Rx (and maybe Sleeping!!)? After finally allowing the latter- I realized I wasn't doped up- I wasn't incapacitated. I was functional! I wouldn't drive or anything, but I don't feel comfortable doing that anyway. I was lucky that I had a doc who already understood that.

    You seem to have the reverse problem... you need your doc to understand! Maybe you could ask for a referral to a pain medicine specialist. I agree with the previous poster about documentation. I have brought that with me, as well as my med bottles to every appt, whether asked or not. That may have unknowingly been to my benefit! (I did it b/c of the fibrofog!!)

    BTW- I had terrible reactions to steroids, too- oral and injected

    I hope your flare relents soon- and that your doc is more prepared for future flares. Please hang in there, take care of yourself, become best friends with your bathtub and whatever brings you relief. Our prayers are with you!

    (I don't know about ebv- sorry!)

    Lollie
    [This Message was Edited on 10/11/2005]