I'm really in a predicament, and need help!!!

Discussion in 'Fibromyalgia Main Forum' started by Cindi, Nov 20, 2002.

  1. Cindi

    Cindi New Member

    Hi all,


    Sorry if this is long! I've been dx'd with FM sice 1997, but have probably had it much longer. I'm not dx'd with CFS (yet), although severe fatigue is at the top of the list! Two years ago I was also dx'd with Lupus and Sjogren's syndrome. All three conditions can cause pain! In the past few years, PAIN has taken ove my life!! I've been on Oxycontin for 2 yrs., 20 mgs twice a day, with 10 mg. tablets for any breakthrough pain. This isn't an "ideal" dose, but it does help me to have some quality of life. My family physician initially put me on the Oxy, and monitored my pain. Eventually, with all the media hype, he stopped writing prescriptions for it. He then put me on the Duragesic Patch, which DID NOTHING to touch my pain! It also made me break out in an allergic rash. At this time, my Rheumy took over prescribing my Oxycontin. A few months ago, my Rheumy told me he wasn't going to prescribe Oxy anymore, either. At about the same time, my son, who has special needs, was having a lot of problems medically, and my other son had surgery on his knee. Between running to doctors and hospitals for my sons, I wasn't able to focus on finding a doctor who could take over my pain management!!! I tried really hard in the past month to find a doctor to manage my care, with NO luck at all!! Out of fear, I started to get my body used to a lower dose of the Oxycontin (10 mgs. twice a day). This is actually going well for me. I am going to lower it to 10 mgs. once a day, probably starting tomorrow. I HAVE NEVER weaned myself from any medication before, ever!!! Now that I only have approximately 2 weeks worth of Oxycontin left, I am really getting scared!! What will happen after I take the last pill??!! I am SO scared of having withdrawal!! I'll be seeing my family doctor on Fri., and will talk to him about my situation. Is there anything he could prescribe for me to counteract the loss of the Oxycontin in my body?? he's a great doctor, and I know that he won't want to see me in pain or having withdrawal. aNY help would be greatly appreciated!!

    Cindi
  2. Cindi

    Cindi New Member

    Hi all,


    Sorry if this is long! I've been dx'd with FM sice 1997, but have probably had it much longer. I'm not dx'd with CFS (yet), although severe fatigue is at the top of the list! Two years ago I was also dx'd with Lupus and Sjogren's syndrome. All three conditions can cause pain! In the past few years, PAIN has taken ove my life!! I've been on Oxycontin for 2 yrs., 20 mgs twice a day, with 10 mg. tablets for any breakthrough pain. This isn't an "ideal" dose, but it does help me to have some quality of life. My family physician initially put me on the Oxy, and monitored my pain. Eventually, with all the media hype, he stopped writing prescriptions for it. He then put me on the Duragesic Patch, which DID NOTHING to touch my pain! It also made me break out in an allergic rash. At this time, my Rheumy took over prescribing my Oxycontin. A few months ago, my Rheumy told me he wasn't going to prescribe Oxy anymore, either. At about the same time, my son, who has special needs, was having a lot of problems medically, and my other son had surgery on his knee. Between running to doctors and hospitals for my sons, I wasn't able to focus on finding a doctor who could take over my pain management!!! I tried really hard in the past month to find a doctor to manage my care, with NO luck at all!! Out of fear, I started to get my body used to a lower dose of the Oxycontin (10 mgs. twice a day). This is actually going well for me. I am going to lower it to 10 mgs. once a day, probably starting tomorrow. I HAVE NEVER weaned myself from any medication before, ever!!! Now that I only have approximately 2 weeks worth of Oxycontin left, I am really getting scared!! What will happen after I take the last pill??!! I am SO scared of having withdrawal!! I'll be seeing my family doctor on Fri., and will talk to him about my situation. Is there anything he could prescribe for me to counteract the loss of the Oxycontin in my body?? he's a great doctor, and I know that he won't want to see me in pain or having withdrawal. aNY help would be greatly appreciated!!

    Cindi
  3. kadywill

    kadywill New Member

    I was just started on Oxy and I cannot understand why some docs are afraid. If they document WHY they are prescribing this and it meets the criteria dosage-wise, there should be no problems. I have had to hide my meds and I am being very careful about security in the house. My son also reported that he has heard of muggings outside of pharmacies in attempts to obtain these drugs. They can sell for $100.00 a pill on the street, he says. I know that docs are held accountable for their actions relating to prescribing narcotic meds, but they also have to be held accountable for preventing to offer pain management that is adequate for the patient. I recently heard of a NC case where the doctor lost his license because he failed to do this. Oxycontin is the very first drug, if used routinely, that has even touched my pain and I would fight and claw my way to another doctor, if I were you..........
    If taken as directed, the smallest effective dose, this is a safe pain management program. I get NO buzz, no adverse effects and I am much clearer-minded than I was when I was in severe pain...........Be smart and take care of yourself in this matter.
    Love,
    Kady
    [This Message was Edited on 11/20/2002]
  4. Cindi

    Cindi New Member

    for your quick reply!! I really appreciate your response. I know that I'm not going to die, even if I do have some withdrawal symptoms, but I'm definately NOT looking forward to the return of my pain!! I like how I feel on the Oxycontin, and don't want to go off of it. I've been down the pain med route, and this is the only thing that's ever given me some relief!

    As far as other Opiates go,I wonder if there's one that works better than others for our type of pain?? I will discuss this at length with my doctor, and I won't leave his office until he gives me something!!

    Thanks, again!
    Cindi
  5. Shirl

    Shirl New Member

    I hear on the news about two weeks ago, that they are developing a form of Oxycontin that cannot be broken down for a 'street' high. Hopefully when they do this, all of you who are getting benefits from it won't be having the problem that Cindi is having now.

    I don't remember anything other than what I said above, no company name, or when this is going to get on the market.

    If they do this, it will take the fear out of the prescribing, and the street price of the high they get from it too.

    If I hear anymore, will make a point of finding out the particulars.



    Maybe someone else might have more information?


    Shalom, Shirl
  6. Cindi

    Cindi New Member

    It is crazy!! I have teenagers, too, and the stories that they hear about drugs...like Oxycontin, is really scary!
    The doctors I have are good docs, but unwilling to work through all the red tape associated with Oxycontin! I AM looking really hard to find a doctor to help me! I, like you, have regained so much with this medication, that was lost when I was in immense pain!! I don't have any adverse reactions to it, I think clearly, and feel great, being almost pain-free. I WON'T give up the hope of finding a doctor to manage my pain!

    Hugs-
    Cindi
  7. kadywill

    kadywill New Member

    Good luck, my love! I will tell you that I could take four Vicodin at a time and it doesn't affect my pain in any way. Not to mention that NO ONE should take that many because of the Tylenol in it and the liver toxicity it can cause. BUT, my point is, nothing has ever helped me other than the Oxy and I pray that what Shirl heard is true and that there will soon be a new, safer med that will be of no use street-wise!
    Love,
    Kady
  8. sugarchunk

    sugarchunk New Member

    i would try a pain management specialist. i don't know what state you're in. i'm in new jersey and go to the pain management and palliative care center of beth isreal hospital in nyc. treating pain is what they do, and they're a well respected institution, so they're not afraid to prescribe(and they don't make me feel embarrassed or ashamed or crazy). my cfs specialist didn't want to prescribe pain killers anymore(it was oxy at the time, now its percocet-my choice)because she was afraid of getting in trouble. sh's not a pain specialist so she gave me the name of someone who is. maybe you could try the same thing- ask your doctors if they know anyone who can and will prescribe something for your pain.
  9. Cindi

    Cindi New Member

    I appreciate ALL of your responses! I don't get to post here as much as I would like, but really appreciate the help when I have a question. I will post an update after I see my family doctor on Fri. Also, I think I may have lined up a good doc. He's on the Co-Cure doctor list. I called his office and they said he does pain management! I'm going to start a thread to the person here who pointed me in his direction. I have a couple of questions about him. I won't get to see him until Dec. 3, but that's only 2 wks. away!!

    Hugs-
    Cindi
  10. selmad

    selmad New Member

    cindi-- I never opt'd for the drug route--but chose herbs to help me through my worst periods of pain. One that I found very effective for me was Wild Lettuce--- in "The Little Herb Book"-- it talks about how Wild Lettuce is like opium without the harmful side effects/or addictive properties. I only used it for pain and to help me sleep during my worst times ...... I'm sure it is probably not as strong as what you're on.....but it doesn't have the harmful side effects either-- everyone is different, so it may not work for you , but is worth a try. Also good for the nervous system. I buy my wild lettuce as the dried leaf from from an Herbalist and brew a tea to drink at night. It tastes like hell--- you can add honey or lemon to attempt to cover up the taste. I wouldn't drink this on a routine basis--but just for the difficult times...... that combined with an allergy wheat free/sugar free/dairy free diet and excercise, massage , etc. worked for me. Other herbs that helped me with pain were St. John's wort, Scullcap, passionflower- I really like Scullcap-- again great for the nervous system which helps you sleep at night...... I wouldn't combine the wild lettuce with drugs you are on-but when you've stopped it is worth trying. If you can't find the fresh herb-I would buy in tincture form (not capsules).. email me if you have additional questions salabbas@us.ibm.com