Need advice regarding my meds -- oxycontin

Discussion in 'Fibromyalgia Main Forum' started by tlsparrow, Oct 3, 2002.

  1. tlsparrow

    tlsparrow New Member

    Hi All,

    I used to post here, but haven't been around for a while. It was good to come back and read everyone's post. Kind of like coming home....

    Anyway, I'm on 80 mg of oxycontin three times a day. I can tell that my body is becoming more and more used to this dosage and is not as effective. My doctor's suggestion was to ween off a bit, using duragesic patches and then starting back up again on the oxy. However, I explained to him that the duragesic patches don't work for me. He really didn't have any other suggestions, but he doesn't want to up my oxy.

    I don't know what to say to him to get him to understand my plight. I saw him yesterday....I'm in a terrible flare and explained this to him. I asked him if I could just use extra oxy when I'm flaring and he said no, because then this extra dosage would become my "base line" dosage.

    He was in a real hurry. I don't think he was in the room for a minute....seriously.

    Any suggestions....what can I say to him to have him take me seriously.

    Oh, I also have percocet for breakthrough pain. (two a day). For me anymore, Percocet is like taking tylenol.

    Any help would be soooo appreciated!

    Terry

    tlsparrow@aol.com
  2. tlsparrow

    tlsparrow New Member

    Hi All,

    I used to post here, but haven't been around for a while. It was good to come back and read everyone's post. Kind of like coming home....

    Anyway, I'm on 80 mg of oxycontin three times a day. I can tell that my body is becoming more and more used to this dosage and is not as effective. My doctor's suggestion was to ween off a bit, using duragesic patches and then starting back up again on the oxy. However, I explained to him that the duragesic patches don't work for me. He really didn't have any other suggestions, but he doesn't want to up my oxy.

    I don't know what to say to him to get him to understand my plight. I saw him yesterday....I'm in a terrible flare and explained this to him. I asked him if I could just use extra oxy when I'm flaring and he said no, because then this extra dosage would become my "base line" dosage.

    He was in a real hurry. I don't think he was in the room for a minute....seriously.

    Any suggestions....what can I say to him to have him take me seriously.

    Oh, I also have percocet for breakthrough pain. (two a day). For me anymore, Percocet is like taking tylenol.

    Any help would be soooo appreciated!

    Terry

    tlsparrow@aol.com
  3. blast

    blast New Member

    Hi there just read your post and can't believe you are going through the same thing as I am. I am on 40mg of oxy three times a day with Norco for breakthrough and I just phoned my doctor today to see what I can do to control my pain because this is no longer working. I have been on this dose for almost a year and I just had a hysterectomy two weeks ago and they didn't change the amount of meds or anything. I am very frustrated because I cannot get into the docs until next monday. She said to go up to 60mgs on one dose and I couldn't tell any difference at all.
    I would really like to try the patch (Duragesic), but you mentioned it didn't help you. Is it not as good as the oxy or as strong?
    Well good luck just wanted to let you know that there is someone out here that has exactly the same problem as you.
    Have you ever tried to not take your oxy? I have and I felt as if I were going to die from the withdrawal!! Just wondered!
    Blast (welcome terry)
  4. fibrokimm

    fibrokimm New Member

    Oxyfriends,

    I would like to suggest you talk with your oxy prescribing doctor to combine your oxy dosages with a dosage of a muscle relaxer,i.e., soma (great for brain fog), xanaflex (great for nerve pain), neurontin, etc.

    This is what works for me. oxy alone is nothing, but combined with a muscle relaxer it is like day and nite. I think this is why many people have to increase they're oxy dosages...I"m suprised doctors are not telling patients more about cocktails.

    By the way, I take 20 mg, 2 times aday of oxy, but combined with 4mg of xanaflex 3 tx a day.

    I think you will immediately see a difference...even with decreasing your oxy dosage, and combining it with a dosage of a muscle relaxer several times aday. In addition, I also take xanax, .05 2 times a day as needed.

    Hope it works for you....i know we are all different in our fm/cfs experiences.

    God Bless,
    fibrokimm
  5. Lynda B.

    Lynda B. New Member

    The cocktail suggestion is fantastic. Many FMS patients are greatly bhelped by the synergy of a muscle relaxant plus the pain med whether it is Soma, Xanax, Clonazopam, etc.

    In addition, if you are all ready doing this and dosage is still a problem, you have probably hit a pain specialist's ceiling for how much oxycontin he/she will prescribe unless you are on you death bed literally. I took 80 mg. three times a day at one point too. I got there by increasing the dosage a little over a couple of years time. My pain specialists (I realize this does not mean he is superman and any better than any one else's) indicated to me ( you can decided or ask you doc if this is true) that the latest reports on oxycontin were showing that patients were having to increase their dosage over time (like 1-4 years). Meaning that patients were, in fact, becoming tolerant to it, unlike some other pain medications.

    I KNOW all of us have different bodies that react in different ways and I understand how you feel. I must admit, that on some days, the oxycontin felt like popping candy, especially when the pain was very severe. I also hated the patch, was allergic to straight morphine but did switch to methadone with a medication that I can use in between dosages for breakthru pain. Don't forget, sometimes that pain is for real. Just when I thought it was good old FMS, I injured my rotator cuff and it mimicked FMS shoulder, neck, head, arm, radiating pain perfectly. But it was a SERIOUS injury and my primary care physcian, who gave me more than one minute, realized this and gave me a cortizone shot in the injured area. That injury radiated so fast and quickly that my right ear canal swelled up and caused me to have nausea, swimming headaches, be off balance, tingling all over in the upper right quadrant, just like FMS can do when bad.

    Within hours the cortizone shot solved most of the problems.

    Thanks goodness, she still gave me more than one minute, unlike my pain specialist.

    Again, I know your body responds differently. I must admit that methadone does not work as well as the oxycontin but I know that I could not keep increasing the amount. The methadone plus breakthru medicine plus muscle relaxants plus NSAIDS (they kill my stomach on really bad days), will at least keep me functioning at a certain level. Some days suck and some are okay.

    I hope you fine what you are looking for and don't be afraid to be creative and assertive. Don't let those docs treat you like you are like all the other FMS patients they have. YOU know that we are all different and respond differently to various meds. Good luck.

    Lynda B.
  6. Mikie

    Mikie Moderator

    This is one of the biggest problems with pain medications. Some docs prefer to combine meds for greater effect from the synergy and others prefer to change meds from time to time.

    The opiods are an excellent choice if one can tolerate them. One does not build a tolerance as rapidly as other meds. That is one reason Morphine is used so prevalently in terminal cases where pain is an issue. I don't have to use my Morphine much anymore for pain, but the same dose still works that I've been using for more than a year. It's a very low dose. I know we are all different, so this may not work for everyone.

    Some people will have to always take pain meds to control their pain; however, I believe there are other things we can do to alleviate pain. Getting a good night's sleep will do wonders for pain because that's when our bodies repair our muscles and produce human growth hormone. Taking ZMA will work synergistically with our other meds to help us sleep.

    Physical therapy is an excellent way to help with pain. Muscles which aren't kept strong and flexible atrophy and hurt when used. Stretching and flexing can be done when in pain and fatigue. While we are getting relief from our pain meds is an excellent time to do the physical therapy.

    The Guai treatment has probably been the main reason I have been able to get rid of the unbearable pain. Whether or not it can be achieved, the goal should be to find a way to get off pain meds. I know that for some, this is not possible, but at least, efforts to do this will help with some of the pain and keep the pain under control at lower doses of pain meds.

    Building high tolerances to pain meds puts a person in a very vulnerable position should she ever sustain very painful injuries and contract a very painful illness like cancer. There may be nothing left to alleviate pain short of a lethal dose of Morphine and the docs won't do that. In the case of a devastating terrorist attack which shuts down the country, it may not be possible to obtain medications until we are up and running again.

    This is not a criticism of people who must rely on pain meds. It is just a suggestion that they try to find alternative methods of controlling pain to at least enhance their pain meds.

    Love, Mikie
  7. xtremepain

    xtremepain New Member

    Hello: I know what you mean when your meds don't help after so long; that is because your fibromyalgia is getting worse. When my fibromyalgia got worse my doctor changed my pain medicine to MS Contin, started off with 15 mg., now increased to 30; my pain is much worse, he might increase again. Good luck! Hope you get some relief soon!
  8. LITEFLAMES

    LITEFLAMES New Member

    hi i also take oxi 30 twice a day , Have been taking it for 3 mth's now , It's given me my life back to some degree, Right now in very bad flare up , Would be in bed if not for the med , First of all, You'll need to tell you'r Dr ,He /she needs to listen to you moor , or you'll have to find someone who will, also , i sugjested to my dr oxi 3 times a day she said its against the law only able to give twice a day , althought i did read on the board abought a women that's on 6 hun mg , i thought s,,, ,i d be dead !!!!
    so i do know they can up you'r dose , we must stand up for are selfs ,
    good luck lady
    cindy
  9. sunshineno2

    sunshineno2 New Member

    I take 30 mg. of methadone and no breakthrough meds. I do have lots of breakthrough pain.
    sunshineno2