Within six months, I was forced to quit my job, leave NYC and move back in with my parents. I spent the following four years on a journey to finding a solution. Along the way, I visited five physical therapists, four urologists, three internists, two pain management specialists and an infectious disease doctor in five cities across the U.S. I spent five weeks trying out an experimental treatment in a small town in Austria. I tried two rounds of acupuncture, one round of dry needling and procured what seemed like a never-ending supply of any accredited quercetin product and Flower Pollen. In short, I experienced the most harrowing series of events in all the years I’ve been on this planet.
I found myself so angry at the world. I was angry that I was afflicted by this condition, constantly replaying in my mind what I could have done differently to avoid being struck by it. I was angry that CPPS was so poorly understood by (and comparatively unimportant to) the medical establishment. I was angry that a primary care doctor I once visited was far more interested in discussing his concerns about my pre-diabetes than CPPS. I was angry that I couldn’t talk openly about this problem in the way I could a broken leg or heart disease or lung cancer. How, I would frequently ask myself, can hundreds of millions of dollars per year be spent on cancer research, and not even a fraction of that be spent on this crippling condition? I recall meeting a woman at Dr. Jerome Weiss’s office in San Francisco who told me that she had suffered from (and conquered) breast cancer and that pelvic pain was a more difficult condition to deal with.
It is so common for CPPS sufferers to recover and then fail to log back in and share their stories and, most importantly, how they beat this terrible condition. I’m here to tell you that this condition can be beaten. That you can beat it. That within a year, or maybe two, it will occupy only a small part of your life, if at all.
I stay busy. One of my biggest fears when I first started dealing with chronic pain was that I would never be able to hold down a steady job, get married or have children. How, I reasoned, would I be able to take on these kinds of responsibilities when I was barely able to combat the pain that so mercilessly attacked me every day? I’m here to tell you that I now work in a job that requires a tremendous commitment of time and energy (70+ hours per week) and that I haven’t had many difficulties in managing the associated challenges. Three years ago I was bedridden. I had purchased five different types of cushions to see which one worked the best. Now I travel on six-hour flights at least once every 6-8 weeks with only mild discomfort. So how did I get here?
My recommendations:
• More than anything else, focus on calming your sympathetic nervous system. Read up on hyperalgesia and allodynia and determine what the best way for you to address stress might be. I have had the most success with meditation and the use of the StressEraser device (admin edit: if unavailable, the EmWave2 is a good alternative), but others have had promising results with the Wise-Anderson protocol.
• Stop looking for a magic bullet. There is no pill, no treatment and no surgery that is going to forever end your CPPS symptoms. The sooner you accept this, the closer you’ll be to finding the right path for you. CPPS disproportionately impacts those who are hypervigilant. It’s a tragic irony that it’s not until you “give up” (accept the condition) that you can truly begin to heal. Without accepting the condition, you'll be wasting half of your time in denial, disbelief, anger, etc.
• Find ways to deal with frustration and anger. CPPS patients can be their own worst enemies. Hypervigilance got you into this mess, but it will not get you out of it.
• Build structure into your life. I get eight hours of sleep every night and walk into work at the exact same time every morning. I eat the same thing for lunch every day and generally leave work around the same time. Routine has been a godsend for me. You may not require as extreme an adherence to a daily set of habits, but I’ve found that structure is generally quite helpful when recovering from something like CPPS.
• Stay busy doing something you like. For me, this has been work. I've found something I love, and invest a tremendous amount of time and energy into it. When I'm busy I simply don't have the luxury of thinking or even obsessing over CPPS. It begins to fade to the background of my life.
• Physical therapy. I have had over 100 sessions of PT, including at least 10-15 with Tim Sawyer, the person I feel to be the most skilled practitioner in the world when it comes to CPPS treatment. I don’t believe that PT alone will heal you (and Tim himself has told me the same) but it can certainly accelerate the process.
• Exercise. Some people may have difficulty with vigorous cardio, but I have found it to be an incredible pain reliever. If you can’t run, try walking or swimming. Just do something to be active.
People on this forum supported me during my darkest hour, and for that I am truly grateful. I wish everyone on this board not merely a pain-free life but one filled with happiness and meaning!
A final note: we often discuss the pain and suffering associated with CPPS, but don’t think about the positive repercussions of dealing with this syndrome. I can say that CPPS has given me a level of confidence with regard to the challenges I face in my career and personal lives. It has made other obstacles in life seem trivial by comparison. It has made me bolder, more willing to take risks, more aware of my mortality and thus more grateful for my time on Earth. Indeed, “The toughest steel is forged in the hottest fire.” Try to remember that while you aren’t in full control of your pain, you’re in full control of how you choose to react to it.