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Laying Off Opioids, Part 2: Adjusting to Change

Note: If you haven’t read my earlier posts, “The War On Opioids Comes Home” and “Laying Off Opioids: Part 1,” you might want to now. They’ll give context to this post.

First: I am still here. I’m still functioning. I’m still a goofy optimist, I’m still happy, and my glass is still half full. The gifts I receive from the world each day include the cooing of doves in the early morning and the two tiny Anna’s hummingbirds that visit our feeders during the day and early evening. These things give me real joy and make me happy to be alive—even when I’m in pain from my rheumatoid disease. And Mom and I are always laughing about something—usually the antics of our two cats. Things could be much worse.

That is not to say that weaning off the opioids I’ve taken for years has been a lark. I’ve had some difficult days when the pain in my wrists, hands, and feet made me despair, and knowing that my small supply of hydrocodone was getting ever smaller didn’t help. I didn’t want to take it unless I really had to, hoping to make what I had left last as long as possible.

I was terrified of running out of it completely.

During this time I’ve slowly cut my dosage of Tramadol in half, as well. Like the stronger opioid, once it’s gone, it’s gone for good.

My primary care physician replaced the hydrocodone with gabapentin, explaining that it would help with my rheumatoid disease pain. Privately, I was very doubtful. I’d Googled, you see. Originally developed to treat epileptic seizures, Gabapentin works very well for that purpose. But prescribed off-label to relieve nerve pain, it’s not very effective.

Nevertheless, I try to be a “compliant” patient. I took it, increasing the dose as directed from one capsule each day to three over about two weeks.

The result? One capsule did nothing. Two made me feel a bit drowsy and dull, but had no effect on my joint pain. Three a day made me feel like my head was detached from my body. It slowed my reflexes and I felt like I was thinking through thick sludge. My hands and feet still twinged and ached.

I hated feeling that way, but it also scared me. As my mother’s (and my own) caregiver, I need to be able to react quickly. She’s 84, frail, suffers from chronic sciatica and stomach problems, and is frequently wobbly on her pins. What if I needed to get her to her doctor or to the hospital fast? How could I do that safely—how could I drive–if my head felt clogged with mud? I felt unsafe even driving to the grocery store.

So I stopped taking the gabapentin after a week. I informed my PCP that I couldn’t and wouldn’t tolerate it, and I explained why.

This was a very low period for me. My pain levels were up, making it hard for me to function normally. I was still taking a Tramadol tablet in the morning and at night, but it only helped a little. I stayed away from my dwindling, small supply of hydrocodone as much as I could. I … persevered, grimly hanging onto my hope.

The bright side? I’ve had no opioid withdrawal symptoms. At first that surprised me because I’d expected to feel yucky from that along with having to cope with greatly increased pain. But the fact is that I wasn’t taking very much hydrocodone in the first place—usually just one 5 mg tablet, but sometimes up to the maximum three per day. Often, I took none at all for several days at a time, even for a week or more. RD pain is like that—it ebbs and flows, goes up and down. It’s unpredictable. And if I didn’t hurt badly, I didn’t take my strong opioid. It’s been many years since it made me feel “high,” which I’d never liked in the first place. I was glad when the drug finally stopped doing that to me and just gave me some significant relief from my RD pain.

I talked to my rheumatologist again, asking him to schedule me for a new dose of my most recent biologic. It had been effective in suppressing my RD, at least for a while. I also told him about my PCP refusing to refer me to the pain clinic. He agreed to set me up for the two infusions (yay!) but told me to talk to her again about the pain clinic referral, as there was no reason that she shouldn’t do it for me. I said I would, but without much hope.

And I did talk to her. Once again, she refused. So, I fired her. I’ll soon see a new PCP. Maybe I’ll get a referral to the pain clinic one of these days.

Desperate now for a way to manage my RD pain, I swallowed my pride and gave that hated gabapentin another try. This time, I went up to two capsules a day over a week. It still made me feel a little drowsy and dull, but I my reflexes were OK. I stuck with it, hoping that my body and brain would adjust to the stuff so that the bad feeling would go away.

It did! And, at about the same time that I noticed that my head felt clearer again, I also noticed that the RD pain in my hands and feet was back down to a very tolerable level. I could hardly believe it. And so, just to test it, I cut the dose back to one a day again.

My pain levels bounced back up fast. Incredible!

I had to eat some crow, but I got in touch with my PCP and asked her to re-prescribe it for me at two caps per day. She did, so that’s how it stands. I’m presently taking no hydrocodone at all, but still take two Tramadol tabs each day along with the gabapentin. My next goal: cutting the Tramadol down to one per day, then to none. At that point I’ll be off all opioids completely.

My take on all this? Each of us is an individual with individual cases of rheumatoid disease. We all have different treatments for the disease and for the pain it causes. In my case, weaning off strong opioids has been easier than I expected even with the increased pain. Discovering that gabapentin helped relieve that pain was a big surprise—and a welcome one. I hope that reading about my experience might help you, too, if you find yourself forced to stop taking opioids for your pain because of the ongoing “opioid crisis.”

Next in this series: Laying off Opioids, Part 3: Therapeutic Neuroscience Education.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • IamStable
    3 years ago

    It’s scary to take these steps. I’ve had success with a certain weekly schedule: Tramadol on Sun, Enbrel on Mon, Tramadol on Wed then Fri. One pill. At 11 am irrespective to my pain or a lack of it.
    I wanted to share with everyone a suggestion given to a friend who has severe back pain by the ER doc: try exedrin migraine (store brand is fine). It works!
    If I need to I’ll take just two pills on the in between day. Great.
    Hope this helps someone.

  • Wren moderator author
    3 years ago

    Hi, IamStable!

    Thank you so much for sharing your successful pain-relief schedule, and for the suggestion regarding that over-the-counter pain reliever.

    A cautionary note, however: Always check with your doctor before trying any new medication or supplement. In this case, OTC drugs that contain aspirin may thin the blood. People who take blood thinners to treat heart conditions need to be especially careful of this.

    I’m so glad you stopped by and took the time to comment! I hope this finds you feeling well. 😀

  • yahara2254
    3 years ago

    What I don’t understand is why do we responsible people who takes there pain meds responsibly have to suffer for the ones who abused there pain meds, the pain that I experience from having Rheumatoid Arthritis and Osteoarthritis can be unbearable at times, why should I have to give up my pain meds, I am a very responsible person when it comes to my health.

  • Wren moderator author
    3 years ago

    Hi, yahara2254,

    I absolutely get your puzzlement, and I do understand how you feel. RD and OA can be dreadfully painful, and for many people, opioids are the only effective answer for pain relief. These are difficult and even scary times for legitimate, responsible pain patients.

    I wish you the best. Thank you so much for commenting!

  • janlorraine
    3 years ago

    I am happy that you have come to some resolution of your problem, but I am also very interested and curious to follow your progress with Gabapentin, a drug I personally would not even try given what I have read about it.

  • Wren moderator author
    3 years ago

    Hi, janlorraine! Thanks for your kind words–I was very relieved not to have much trouble weaning of hydrocodone. What I’ve discovered about gabapentin, so far, is that it might cause some of the side effects I described above, but they usually don’t last for long. This was my experience, and I’ve been really glad that it has helped reduce my overall pain. I do plan to write more about this in the future.

    Thanks for taking the time to comment! 🙂

  • Carla Kienast
    3 years ago

    Wren: So sorry that politics is making you go through this, but I am thrilled that you are finding some relief. Thanks for sharing your journey with the rest of us who will, no doubt, have to walk the path you are already taking.

  • Wren moderator author
    3 years ago

    Hi, Carla!
    I was thrilled, too, and surprised that so much of my RD pain was nerve-related. Let’s hope that the political powers that be will learn some compassion for those of us with legitimate chronic pain.
    Thanks for commenting! 🙂

  • kingjer
    3 years ago

    I am enjoying your posts. I have walked the path you are on and I have to tell you that the TNE and CBT ARE helpful. I attended a 4 week program at the Rehabilitation Institute of Chicago this summer and the therapies have helped me cut my opioid use down to a level I haven’t experienced in years. I have dealt with RD and Scoliosis issues for 35 years. I was a responsible opioid user and was panicked to read published reports that doctors were taking patients off of the drugs at “speed of light” rates. However, I now feel equipped to deal with this probability. I am hoping that I will be able to manage my pain with Gabapentin and Tramadol alone. Keep us informed and know that you are a voice for so many. God bless you and thank you for your service!

  • Wren moderator author
    3 years ago

    Hi, kingjer!
    I’m glad to hear that TNE and CBT are working so well for you–and that you feel they’ve prepared you well should you have to cut back on or stop taking opioids. These are the kinds of tools all of us need while coping with painful and disabling diseases like rheumatoid disease.
    Gabapentin is helping me. I’m glad it’s helping you, too.
    Thank you so much for taking the time to comment. I hope you’ll stop by again before long. We love to hear from you! 😀

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