I'm hoping my experience with RSD and also with Nucynta may help someone else somewhere along the line. I've posted some about the struggle I've had in the past several years. I had done many injections, infusions, procedures and many medications with very little relief from the pain.
A few weeks ago I was put on Nucynta. It's a fairly new drug and has been compared to oxycodone and other opioids as far as pain relief goes. From my first dose of Nucynta, I got tremendous pain relief. Unfortunately, I also experienced EXTREME side effects that were beyond uncomfortable and also, at times frightening. I was in contact with my pain doctor and the pharmacist several times throughout the nearly 2 weeks I was on it. I was told it could take up to 2 weeks for it to "metabolize" and for the side effects to diminish. Because it's a new med and there's not a lot of information out there, I thought this may help someone in some way.
Side effects: All side effects I had were extremely severe. With the first dose, I was very out of it, nodding off, and having hallucinations and vivid bad dreams. Thankfully, that was only a one-time thing. The rest of the side effects got worse with each dose I took. The list is long: dry mouth and throat (having trouble swallowing,) terrible anxiety/agitation, muscle weakness/shakiness in legs, hands trembling, nausea, extreme vomiting and retching (every 20 minutes on one day,) heart racing, perception of time totally off, felt like all my nerves were on fire and on edge, short-tempered, serious insomnia, jitteriness, and overall weakness.
The pharmacist said that while my side effects were very severe, they weren't abnormal. After being on it nearly 2 weeks, though, I couldn't take it anymore. I was put back on oxycodone at a low dose, and from the first dose of that, the side effects began to diminish. It was a whole week, though, before they totally resolved.
What's interesting is that after over 5 years of terrible pain that wasn't relieved by high doses of long and short-acting narcotics, Cymbalta, Ativan and Ambien, is that I am nearly pain free. The doctor is hopeful that since it's been over a week with no recurrence of the RSD pain that it's possible that the sympathetic nerve was "reset." She's looking into this to see if any of her colleagues across the country have had any patients that had side effects as badly as I did or if they've had the response I've had. When we decided that I needed to stop taking it, I figured the pain would come back but it hasn't.
I can't even explain how I feel right now. I was at the point where my pain had been, on average at a 6 to 8 most days, despite pain meds. All of the things that I've had trouble doing over the last 5 years are now effortless and using my hand does not cause any pain flare-ups. I was at the point that driving was difficult, as was cooking, laundry or anything that used my hand. The last six months had been particularly bad, and so many times I thought, "Is this what every day of the rest of my life is going to be like?" I was finding it hard to interact with people. So much energy is spent trying to work through the pain that even things like having a conversation was difficult. The worst part was that I wasn't enjoying my kids. I couldn't go to their activities or hang out with them at the beach or watching moves. The pain had been so bad it was at the point it was all-consuming.
The doctor asked me if this really has resolved the pain, was it worth all the side effects and being so sick ... I would say definitely yes!! Even if this is only temporary, I am so grateful for a week of hardly any pain, thinking clearly, sleeping well, and having an appetite.
I still have some slight pain in the area where I had the joint replacement but it is negligible. Maybe once or twice a day it might feel a little achey but it's barely noticeable. And even though my hand, wrist and forearm is where the worst of my pain had been, I also had other pain from fibromyalgia, a herniated disc in my back and moderate to severe pain from arthritis in my hip and right hand. All of that pain has also gone away.
I guess time will tell whether this is permanent. I hope it is. I feel like a miracle has happened. The plan going forward is to stay on the low dose oxycodone for the time being. I'm going to have some PT to try to strengthen my hand.
I am so thankful for all the support and suggestions I've been given on this forum. No one in my real life can understand this type of pain and at times I had felt so alone. The members here are who got me through the last several years and I thank you all! There's a special few (who know who they are :) that have gone above and beyond with help, suggestions and support, and to those, a very special thank you and you are all in my prayers for pain relief.