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    Guinea Pig
    An_250631 posted:
    Diagnosed 3 years ago, on and off of many drugs, found something that works, fentanyl patches, oxycodone for breakthrough and Lyrica. Dr and I decided together to lower the oxycodone dose, and I am SUFFERING! Normal pain, fatigue and now increased joint pain, especially in my knees, feeling lots of anxiety and crying easily. It's been 3 weeks since I tapered down the dose, so the Dr. Says I shouldn't be feeling any of this. Advice?
    roniedea responded:
    Opioids is a tricky subject! I've been fighting doctors for 8 yrs. now about the fact that I have tried everything else for my pain and only because nothing else worked I tried pain meds and they worked for me. However, ever since then I have had to fight everyone to keep the only thing that gives me any relief from my constant serious pain. They keep trying to tell me that they shouldnt work for fibro, but they do work for me. All that did was convince me that I have more going on than just fibro, and I insisted on more testing. Come to find out I was right, they found out that I also have s.p.s. and part of the treatment for that IS pain medication! My best advice is not to let the doctors tell you what works for you, just keep trying other less addictive things cause something may yet turn up that works for you that is less contravertial(?) and doesnt have as much stygma attached to it. But for now, use what works to keep you functioning cause once you lay down and give up, youre down for good! Good luck, ronie
    BetteK replied to roniedea's response:
    An and Ronie,

    About 20 years ago (the day my doc saw me at major flare time) I started on fentanyl patches. For many years they were alternated with oxycontin. The big question was, "What will you do when you decide to stop the medication?" I had already been in pain for 20 years and couldn't imagine a time when I would ever go off opioids.

    Well, the worst of the pain is at L4. I get nerve blocks there every 3 months. I don't need opioids. Going off was a step-down process, but my choice. The worst part was going from the lowest dose of oxycontin to none. Nights were horrible with the creepy crawlies, like you itched on the inside of your skin. I used ambien for 4 nights in a row. That was it.

    If I ever need opioids in the future, I will find a doctor who is willing to prescribe them. (The first prescriber was 90 miles away!) But, honestly, I don't think it should be a problem for any legitimate pain patient to get the medical help needed. Basic humanity and compassion demand it.

    Ronie, you may have to find a different doc, but first make sure your current one sees you on a really bad day.Seeing is believing. Without seeing you in a flare, your doc may not believe the extent of your pain.


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