Forest

Some Favorite Threads and Posts

• The Importance of Addressing our Childhood
• I'm a TMSer Triathlete
• Anxiety/especially health anxiety
• Tried Everything...I'm Desperate

I encourage everyone to make a list like the one above, to share the threads that you find most helpful. To see how, click here.

My story

As you can read, below, I had my own 18 year struggle with TMS. It played a huge role in my young adulthood and I think that no one should have to live with TMS pain. Therefore, as I was recovering, I decided to found a wiki about TMS where people could share their experiences as peers. That was 6 years ago, and I am now the president of The PPD/TMS Peer Network, the 501(c)(3) nonprofit that runs this website. I have also presented at the TMS conferences in Ann Arbor, Los Angeles, and New York, as well as the TMS Master Class in New York.

What I have learned the most from are are my own experiences (see below) and what I have read on this forum. I do put a lot of effort in behind the scenes, though. To help people understand where my time goes, I put together a todo list a couple years back.

Feel free to hit me up on Facebook or LinkedIn.

My experience with TMS

I've done videos of my success story and a relapse I had. There is also a video of a presentation of my story that I gave at a conference. The following is the writeup that I did when I first started posting, 5 years ago:

TMS first started affecting me when I was a teenager. I was a bit of computer hacker, typing away on my Mac plus, when my forearms began to hurt. I visited a doctor about it, and was told that I had tendonitis from too much typing. I was sent to occupational therapy and told that I needed to be careful about typing too much.

Unfortunately, despite my best efforts, the "tendonitis" only got worse. As time progressed, the amount that I could type or mouse before my symptoms started to flare up got smaller and smaller until, five years in, I couldn't type more than a couple sentences without some sort of flare up. Worse, the "RSI," as I now called it, began spreading into my neck and back. I became very limited in the amount of time that I could spend sitting in certain chairs, looking down at papers on a desk, or even writing.

Eventually, I graduated college. Holding any sort of job was a challenge, but I still had to support myself, so it felt like a struggle to survive. The pain levels always got worse when I did certain activities, and I had been trained to believe that if I didn't stop doing those activities the pain level would keep getting worse until it was excruciating. Experience had taught me that the worse I let it get, the more rest it would take to "heal."

My hands were so sensitive that I would develop writers cramp after writing even a very small amount of text. I tried using voice recognition software many times (I own 5 versions of Dragon NaturallySpeaking), but whenever I did, my throat started to hurt. That terrified me because I didn't want to have to drastically limit my speaking the way I felt I had to drastically limit my computer use and handwriting. If that happened, how could I hold a job?

That was the way that my life was for over 10 years. I chose my jobs based on what I felt would give me the best chance of healing. I avoided dating because I felt like I needed to focus on getting some financial security. When I did date, I refused to get married because I felt like it was all that I could do to keep myself employed without worsening my RSI, so I knew that I couldn't be a good father or husband.

I had come across mind-body ideas years ago, mostly from Paul Marxhausen's postings on the Sorehand mailing list. However, they felt to far-fetched to me at the time, so they didn't help me. What finally convinced me was stumbling across and reading a bunch of TMS success stories last December that were written by people whose experiences were extremely similar to my own. That convinced me to push my boundaries a little. Doing so went terrifically, which helped me believe the ideas more. Eventually, the whole process snowballed, and now I don't limit my day to day activities at all and am enjoying athletic activities that I had avoided for a long time. I still have occasional flareups, but they don't bother me, even though I am doing far more than before. I just ignore the symptoms, and feel like I have my life back.

Almost immediately after recovering, I started thinking about starting a wiki, because I wanted to share what I had learned with other people who were still sick. Since it was reading other people's success stories that cured me, the first thing that I decided to work on was the Success Stories by Symptoms & Diagnoses page. I want everyone to be able to find a list of success stories by people "just like them," as well as information about their specific diagnosis or symptoms.

I also always thought of the wiki as being part of my healing plan. I had had recoveries like this before, but had always relapsed. The immense investment that I have made in the nonprofit has forced me to commit to mind-body ideas. I'm very proud of what I've done on the wiki, and helping people through it is slowly becoming part of my identity. I'm an extremely private person, but I just told my first work friend about it, and have finally mustered the guts to put my success story up. After all of this, how could I possibly not commit to this approach?

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