It feels like I have lived multiple lives: my life has been so incongruent and non-linear due the upheaval and deviation of chronic pain entering in 2000 in the form of Complex Regional Pain Syndrome.

It is in some ways very hard for me to imagine that 29 year-old, successful life I was living.  I have to dig deep to feel that person, the person who was another version, a physically pain-free version of me.

To go back in time: I was in Human Resources and worked my way to a position and salary I could be proud of.  I was creating a real path career wise.  I was not married with children, however had had serious relations and at the time of my injury I had been dating the same guy for eight months. I was active.  I worked out and ran every night after work. And while I had grown up in New Jersey and went to college there, I was living in Boston with lots of other young professionals who had become friends.

I was happy, but I did carry over some old trauma from childhood. It didn’t seem to interfere with life. But I could never have imagined that it would surface and propel disabling chronic physical pain and send me on a merry go round, setting me on this long journey and the many lives of me.

In September of 2000, I sustained an injury on the elliptical trainer at the gym. It went pop and hurt, but I thought I’d just go home and ice rest. But the pain from that kept getting worse, not better weeks and months later. It started in my hip/low back area, a burning that traveled down my legs and landed in my feet. That could only be described like razor blades under my skin in the muscle itself and it felt like they moved and reverberated my legs to the point where I’d have to search for medical help and answers.

This next version of me: the desperate seeker. I went to countless physicians and practitioners: orthopedics, neurologists, podiatrists, physiatrists, primary care, physical therapists, chiropractors, acupuncturists, etc. Then there were countless films and tests. The best deduction they could make was I injured my sacro-iliac joint and, hence, it was unstable and destabilizing my discs in my low back like a xylophone. My leg pain they blamed on radiculopathy (referred nerve pain coming from discs).

Well, now I had a name, but the more research I did the less sense it made. The doctors minimized my pain and sent me to physical therapy. There, they basically suggested it was not a huge deal, that I should just accept my plight.

Meanwhile, the pain was interfering with my life in every way. By month six, my relationship with my boyfriend was over and I was working from home well before the rest of the world was doing this. Groceries I had delivered from time to time, but mostly I didn’t even eat. I had fully given up my social life. I was in severe distress and did nothing but lie on a couch. The only time I left the house was to go to medical appointments which had become exhausting and pointless.

I searched for more options. I found a surgeon in Atlanta who recommended that I fuse the joint. It never seemed odd to me that no doctors in Boston thought of this. In September, not quite a year later I was traveling down south to have the surgery and that surgeon I thought was a messiah.

Wrong. The surgery didn’t help me and it was useless. But the seeker in me wouldn’t give up. Desperate to “get fixed”, I found a surgeon in Manhattan who said he could. I had S-I joint fusions on both sides and, nope, that didn’t help either.

The seeker now turns to deflated me: Around this time, my employer decided it was no longer working out. I can’t blame them as I was sending out company-wide emails at 3am and not performing. It was somewhat of a relief when they let me go because I could no longer take care of myself. My family packed up my belongings and I soon landed on my parent’s couch.

I was depressed and lay on that couch for a year, pumped up on opioids and wanting nothing to do with life. I had given up. I was on chronic pain support groups online and commiserating with other lost people. I only saw my family and didn’t even want to do that. I no longer wanted to even live. My weight was becoming a problem as I was finding comfort in soda, sugar, carbs and no activity. I literally doubled my weight, eventually ballooning to 300 pounds.

One day, a little spark of seeker Deana entered and, in 2002, I did an online search on my painful leg symptoms which led me to information on CRPS, called RSD at that time. I read it, related, and knew immediately this was it. It completely defined me.

How could the medical community have missed this, all the wasted time treating my SI joint?  The downer though was that CRPS seemed permanent from what I was reading. I saw a neurologist in Philadelphia who specialized in it and he agreed with my self-diagnosis. I was furious that it had taken two and half years for answers.

But his treatment was just more opioids. This was prior to the opioid crisis and that’s what doctors did at the time to treat painful symptoms. I became extremely large physically, not even bothering to shower, brushing my hair or teeth.

In 2008, I did get my own studio apartment. I was living on disability which is next to nothing. I was living like a pauper. I didn’t even have a car and my dad took me to doctor appointments and the grocery store. I was in this state until 2017.

That year I had a rare moment of clarity after seeing a picture of myself from a family function I was forced to go to. It made me realize how I was living and like that I made the decision that I have pain and maybe I can’t beat it, but I can fight back. I can live a better life.

Enter the rebuilding me: I joined the Y to get access to a warm water pool. I dumped the soda and carbs and sugars. The former me was thin and fit and I just had to find a way to get there again, despite the pain.

In less than a year and a half, I took the weight off. I dumped the opioids and started on gabapentin which treated the nerve and circulation problems down my legs. I got a used Honda and went back to work part time. Eventually, in 2022, I bought my own little condo.

I am in regular psychotherapy now and, though it’s personal and I’m not ready for full disclosure, I feel completely that I should have healed from my initial injury, that CRPS never should have developed. I should have been healing, but, instead I was suffering severe and constant panic attacks from old trauma. This prevented normal and natural healing as it was like an irreversible circuit break in my nervous system. The more I learn about how old trauma is connected to chronic pain, the less doubt I have. I am happy to report I haven’t had a panic attack since 2000 at time of my injury.

I am in a good spot physically and mentally these days. I socialize with friends and am dating again. I have a new job now as an administrative assistant versus my old career and I love the part-time schedule. The job and my schedule are an ideal fit given my circumstances. I even workout again and I now walk for exercise, replacing that for the running I did in another version of me.

I am happy to have found Cynthia and other people on this journey, as they make me feel so much less alone. Rebuilding and healthy will soon be me. I’m on a journey. I am winning and the pain be damned. You’ve taken too much away from me already!