Hi Lit Love. (I am sorry I write such long responses. I think it is because I am isolated every day due to the pain and I hardly ever talk to anyone.)

I don’t know if I would say I prefer to be under-medicated, but it is true I don’t like taking the medication. It is kind of a non issue since my daily CRPS pain is so bad that I would consider it not survivable without some way of bringing it down to controllable levels.

The reason I try to keep the Opiate levels within a low range is this. Like many people with CRPS my pain and symptoms have gotten worse over the last 10+ years. As a result my Opiate levels were periodically raised to compensate for the increased pain. After many years of this I ended up at over 300mg of Oxycontin per day. (I have also done medication trials with about 20 or more other kinds of medications as well as various treatments).

300mg+ per day was not beneficial since, for me anyway, I developed Hyperalgesia as a result and I ended up being in as much pain at high Opiates as I was at the lower doses. So due to Hyperalgesia, and also due to my body adjusting to the Opiates, the high doses don’t help me in the long term.

In the short term higher Opiate doses definitely help control my pain. But after 10+ years I am no longer thinking in terms of dealing with my pain at the moment. Instead I am thinking in terms of what is the best way to handle the CRPS so that in a year or 2 or 3 I may be better off overall. I have already learned the hard way that just raising my Opiates will not help me feel less pain in the long term. This is just my own experience, I am sure it can be different for others with CRPS.

Also, for me, the high Opiate doses caused all kinds of secondary health problems like very poor blood circulation and swollen hands and feet. Also it added to my fatigue and I was not able to function enough to exercise to try to improve my condition. A specialist told me at the time that it was only a matter of time until I developed a blood clot.

There is something else with regard to adjusting to the Opiates over time. If for example I am taking 10mg at 3x per day (just making up a number), and my CRPS pain is still breaking through, then I take a 10mg IR to compensate between doses. This will invariably lead to my taking the IR on a regular basis since my CRPS pain is always bad. Over time this then becomes taking my 10mg at 3x and my 10mg IR at 3x on a regular basis, and the IR has transitioned from being a breakthrough dose to being a regular daily dose. This then results in doubling my daily dose, which in turn is not effective over time due to Hyperalgesia and/or body adjustment. Then eventually my base dose gets increased to compensate for the increased pain, and then the pattern starts all over again. This is how I ended up at 300mg+ per day while still being in as much pain or more as I was at the original low dose (and added health problems).

So for me, and again this is just my own experience over 10+ years, I have found that I am able to better control my CRPS pain in the long term, by allowing myself to remain in pain for the short term, keeping my base Opiates low, and only taking the IR Opiates when the pain is off the scale. There are many doctors that would not agree with this approach.

It may sound crazy, but I have seen positive results by using this approach for the last 3 years. I am not doing it alone, I work very closely with a CRPS specialist (I deliberately went out and found the best CRPS specialist I could find in my area). It is a very, very painful process in the short term (months), but it has definitely produced positive results in the long term (years). Exercise is the key to making the CRPS less debilitating.

I volunteered for this process, it is not for everyone, and it is too painful for the CRPS specialist to force someone to do. I would not have considered it 5 years ago when I still had reasonable results from the Opiates. But I reached a point later where I had already taken the Opiates and other medications to their conclusion, and for me (again this is just my experience), the end result was severe out of control pain and symptoms at very high Opiate doses. I was completely broken down by the CRPS and I was just waiting for a blood clot to kill or paralyze me (or lose a limb).

So, if your still reading and haven’t fallen asleep. To answer your question, no I don’t prefer to be under-medicated, it is just part of my overall CRPS management process.

Bernclay-