Coccydynia and Levator Ani Syndrome diagnoses


I'm a 37 year old female. I have had severe coccyx pain and muscle spasms in the area for 4 years now. (7 years prior, I fell down a flight of wooden stairs, on my butt the whole way down. I was very bruised and my tailbone killed me for 2 weeks, but then stopped.) When it started up again, I was diagnosed two times (two different specialists) with Coccydynia, and once with Pelvic Floor Myalgia, once with Levator Ani Syndrome and once with no name but told that my coccyx was irritating a muscle, causing severe spasms and pain. I had a CT scan, 3 MRI's and X-rays. I was also told once that my uterus tilts backwards and leans on my rectum, causing the pain.

I could feel the twitching soon as I sat. I can barely sit at all and the pain is active day and night, and when I lie down, but not while sleeping and I wake up without pain. For 3 years, nothing helped the pain. No anti-inflammatories, steroids, no pain killers, no injections, no anti-anxiety pills and stuff like Neurontin or Tegretol, nothing worked. Zanaflex worked for 2 months, but I was falling asleep at work and could never drive. Then it stopped working completely. No matter where I was, what special cushion I used, or what treatment I got (physical therapy, heat, ice packs, electric stimulation, etc, etc.) sitting was nearly impossible.

After 8 specialists and countless medications, I was referred to Dr. Sarno in NYC. I was sceptical but went. I was also hopeless by this point. I then went to his lecture. I read The MindBody Prescription and got the video. Strangely, after a few months of really reading it over and over, the pain changed from unbearable to just distracting and painful, but no longer the "kill me now, I can't take it anymore" pain. Then the strangest thing happened. I went on a vacation for 10 days expecting to suffer, of course, but went because I needed a break from work. I sat on hard stools, cement walls, cushy chairs, you name it - with NO PAIN AT ALL for 10 full days. Not a twitch of spasm ever even started up. The pain was not even present on the 3 hour flight to my vacation spot, nor was it present on my return trip. It came back the next day, soon as I got into my chair to work. !!! The pain kept up, and I gave up on Dr. Sarno's book and diagnosis. But then I went away again, this time a 6 hour flight, for a 5 day trip, and I sat on that plane for 6 hours without any coccyx pain at all. I was in total shock. My pain never once harassed me for the 5 days away. I was fine on the return flight, too. I was okay for the weekend I returned home, but Monday came, and I sat down to work and BOOM! Big huge monstrous pain and I could barely sit still, squirming and trying to avoid sitting straight on my tailbone.

Since those 2 times, I've gone away 5 more times and each time I left the coccydynia home. Now, my coccyx and muscles don't know or care what state of the USA I'm in, if I had real 100% Coccydynia, shouldn't it have bothered me regardless of where I was? Yes. Only my BRAIN knew I was away, not worrying about life, not working, not doing my daily routine at home. I have no idea what deep in my unconscious is setting off this horrible pain to my coccyx area, but now seeing that it went totally away many times while I'm away, I went back to the Dr. Sarno book and got the video, and I'm also in therapy with a doctor recommended by Dr. Sarno. I can now sit without pain at a concert or event I like, even on hard wood chairs, but still have trouble with my office chair and chairs at home. I can also sit for hours on the ground, but only if at an outdoor concert! It's baffling! I'm told I will improve with time. I now don't tell people I have coccydynia, but I say I have TMS. I have met one other person with my same coccyx symptoms who went to Dr. Sarno and improved greatly applying his principles. It doesn't work if you don't accept the diagnosis.

Updated 2004-02-29

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