I've been blessed with a relatively pain free life until CIDP kicked in. Before that I had broken ribs & a punctured lung from a fall, a fractured wrist, several abdominal surgeries, but nothing chronic. Chronic pain is a world of its own, a world that people who don't live in it can't really understand. Thus, unfortunately, as with several types of illnesses, there's too often a stigma attached to it.

Then there's the challenge of treating the pain or pain management. I've been going down both roads for around 10 years. As I've written in the past, I tried all of the traditional neuropathy meds, and Lyrica was the only one that helped, but my reaction to it put me in the hospital for a few days. Then I went through the list of meds my neurologist had to offer, then a pain specialist, now a 3rd pain specialist, and the pain persists. In 2017 I had a spinal cord stimulator implant and enjoyed a year of wonderful 75% relief, then gradually less and less relief, down to what it is now ?%.

Morphine sulfate contin is the only medication that actually reduced the pain, of all the many, many medications I tried. I've never tried a Fentanyl patch. 30mg tid was the therapeutic dose when I was taking it. But my doctor's clinic made a decision to limit narcotics to 90mg, so he cut my dose in half, which was not enough, and nothing I could say would convince him to put it back up to the therapeutic level, which, by the way, would have been in line with CDC protocol. I finally got tired of the hassle of having to keep up with getting a fresh prescription every 28 days, of dealing with the comments by my wife about my medications, of Medicare sending letters requiring authorization for that and the Clonazepam 1 take for anxiety, and talked with a pain specialist about an alternative, and switched to buprenorphine. That requires regular visits to the doctor and urine samples because it's usually prescribed for people getting off heroin, even though I was taking it for pain - ridiculous! I tapered off that on my own to see if it was helping, and I couldn't feel any change, so I'm now taking Topamax (Topiramate). Not sure yet how much good it is either. I wish the government would get out of the medical profession and allow doctors to prescribe the medication that they know will work for their specific patient and not penalize everyone because of those who abuse the drugs that are needed by those who would take them responsibly.

Because of my mental health issues - depression, anxiety disorder, PTSD and OCD - it's additionally hard for me to deal with things like self advocacy. Chronic pain in tandem with depression or other mental health issues feed on each other, as well. Over the past 20 years, my mental health has greatly improved with the help of a number of good therapists. I'm in a safe place now mentally, no longer suicidal, I take interest in a few things, I try to stay active as much as the pain in my feet permits. So, life goes on.

Jim