After living with chronic pain all of my life, and trying everything there is to try, I've found what helps me the most is talking to others who fight the same battle. With this site I hope to help people that live with chronic pain find others that they can relate to, share stories of struggle, success, hope, and survival. I found great relief when I met other people who felt exactly like me and I realized that despite what doctors might say...I wasn't the only one. Chronic pain makes life a constant battle, but I hope you can find the support you need here.
-Joanna

My Story

I was diagnosed with chronic migraine when I was two years old. The diagnosis came from ruling everything else out. The migraines were pretty well controlled with medication until age 10, when I developed a daily headache and the migraines became more frequent. I began going to pain management appointments and learned how to live a normal life despite the pain. I was “sick” a lot, but until 1999 I was always in control of my migraines. In August that year I developed what I later learned was an “Irrectractable migraine” which are known to last anywhere from weeks to years. At the time my neurologist and pediatrician were stumped. They said this had never happened to anyone else, that I was the only one. I was hospitalized and received medication for five days. I was overdosed and ended up leaving the hospital in worse shape then I had been admitted in. I couldn’t \return to school for over a month and when I did return I had to do so in a wheelchair. I started one period at a time and slowly worked up to full days. Slowly I regained my strength.

After follow-up appointments my doctors were still baffled. One even pulled my parents into the next room and told them, loudly enough so that I could still hear, that it was “all in my head.” Luckily my parents were very supportive of me and asked him how many years of medical school it took him to realize that migraines were all in your head. We never went back to him, but still I felt that I was the only one and that something was seriously wrong with me. But then, I got online and looked up “irretractable migraine.” Instantly I found other people’s stories of what they had been through, what they did to get better, what worked and what didn’t, recommendations for treatment, warnings against treatment…Everything. But the most important things I found were other people who knew exactly how I felt.

The support and comfort I found in these people was amazing. After two years the migraine died down and I was left with an elevated daily headache. I still haven’t found medications that work but I have found many ways that help me deal with the pain and live a normal life, many of which I learned from my friends on the internet. Other things I learned on my own. After that experience I vowed never to let the pain win again. And to this day I haven’t. I learned to be more assertive when I know a medication isn’t right and to keep looking until I find the right doctor. There are good ones out there. I rarely miss school and I got a 504 so that I could keep up in school despite my migraines. I also wanted to create a place for people with chronic pain to come and hopefully find the support and comfort I did. Being able to talk to others that understood completely how I felt made all the difference in the world to me. It one of the reasons I have been able to beat the pain and stay in control.