The doctor told me "Just Deal With It"

Kelly -

Hi All,

I am a 43 year-old woman who used to be an active mother, wife, friend, and technical editor. All of that ended one day in November 2003. To preface my story, I had fallen down the flight of stairs in my home that had yet to be carpeted. So, down I flew 13 steps with a basket of laundry on a Saturday afternoon. At first, I thought that I had just bruised my tailbone. I knew exactly where I had damaged my back, since as most of you know, you can put your finger right on the "spot". Anyway, I stayed in bed until Monday morning, when no longer able to take the pain anymore, I called in sick and went to my orthopedic specialist. He and I had a good relationship, since I had seen him quite a bit for sports-related injuries and the fact that I have chronic degenerative disc disease. So, I trusted him to take care of this situation, which he did.

I was off work for 8 weeks and went through very painful physical therapy, but came out of it with flying colors, or so I thought. Thinking back, I remember him telling me at my last visit, that in very, very rare cases, fracturing your tailbone can cause some long-term, disabling problems. I, of course, didn't pay any attention to him, since I felt great and was excited about getting back to work at a job that I absolutely loved.

Fast forward a year and a half later, I was walking down the corridor at my office and all of a sudden, I felt as if someone had just hit me in my tailbone with a 300-pound sledgehammer and down I went. The pain was so excruciating and out-of-the-blue, I immediately rushed to the emergency room. They gave me a script for Vicodin and told me to see my orthopedic surgeon immediately. Which I did. It was then that my journey for answers, help, and understanding began. I went from neurologists, neurosurgeons, was told to go to my OB-GYN, and even a urologist. I have had endless MRIs, bone scans, nerve scans, X-rays, and every other test that you can think of. (Only after years of research, have I found that there are some more tests that might be more revealing but, frustratingly, I am told that since I have been diagnosed and am not considered a safe surgical risk, there is no need for these tests.) Lastly, I was sent to The Cleveland Clinic, just the same as The Mayo Clinic, these being the holy grails of the medical profession.

At The Cleveland Clinic, I was definitively diagnosed with Acute Chronic Coccydynia with bulging T4 and T5 discs. Added to this, of course, is my long history of Acute Degenerative Disc Disease. I was told to find a good Pain Management Clinic, experiment with different medications and doses, and deal with it because, with the high probability of paralysis, there is not a surgeon in this country that would put me under the knife, even if I was willing to accept the chances of paralysis (which there are days that I do feel that I would rather be paralyzed than to deal with this pain any longer). But for a physician in one of the best hospitals in the world to tell me to JUST DEAL WITH IT was just too much for me to believe! The way he said it to me was as if he was ordering a burger and a coke. Doesn't he know how much pain I am in? Doesn't he understand the endless abyss of depression I am swimming in? That I am on tons of Morphine, Xanax, Neurontin, and an endless array of anti-depressants, all of which are not doing squat? What is wrong with this man?

So, off I went in utter disbelief, but without any further advice, and found a Pain Management Clinic. It is here that I have found sympathetic doctors, doctors that are as interested in ending my pain as I am myself. They have also helped me with my depression and my denial. They are aware of the tests that are out there that have not been performed on me (i.e. discogram), but since I am not a surgical candidate at this time, there really is no reason for me to go through any further frustration, which they feel that these tests will probably bring.

We have worked together in getting my medications as good as they get. I am currently taking 30 mg of Oxycontin every 3 hours, 80 mg of extended release Oxycontin twice daily, 10 mg of Valium 4 times a day (FYI, they switched me from Xanax to Valium because the Valium deals with my frequent anxiety attacks, but also helps with the spasms of the nerves surrounding my coccyx. This is one example of the proactive thinking of my pain management doc). I am completely lucid. I've been told that I do not get "high" on my medication because it is directed to the pain neurotransmitters. It is only those that are not in pain that experience a sense of being "high" from these kind of meds, but they would probably be knocked out before feeling anything because of the amount I am on and used to. He understands completely that this is my pain and that I know what is best for my body. Physical Therapy not only has not helped my pain, but had made it worse, even the water therapy. The water felt great while I was in the warm water pool, but once I was out, and the moisture sunk into my "areas of pain", it was excruciating. They listen and respond when I have something to say or ask. We tried the steroid shots, he injected me not only within the area of the tailbone, but in the ganglia of nerves surrounding it. After 3 tries, we have agreed that these are of no use and therefore, frustrating and painful for me to undergo anymore.

I have gone to a few therapy sessions with a psychiatrist, one session was a requirement to get into the pain management program. But both myself and the therapist feel that I am no longer clinically depressed because I have accepted what has happened to me and am proactive in making my life as enjoyable as possible. Sure, I get depressed sometimes, but anyone in my position that didn't get depressed once in awhile is in trouble!

There are some changes that I have made or have had to make in order to make my life livable again. I have accepted that I will probably never work again, but thankfully, I was smart enough to check those little boxes at work that said "short-term and long-term disability benefits". It is not what I used to make but thankfully, I am married to a wonderfully understanding man. It's the boredom that gets to you.

The following actions have worked for me and I hope you find them helpful. First of all, shower every day, if that's not realistic, at least every other day. Even though you aren't "out there" with the rest of the world doesn't mean that you have to fall apart. As a woman, I put on my makeup as often as it is possible for me to sit that long. Also, as a woman, I am always on the lookout for that kick-ass lipstick and fingernail polish color :) Find a hobby--FAST. I myself crochet, read, and TV and the Internet has become some of my best friends (TV helps me to disassociate when the pain gets too much to bear, even with all of my meds ) I can tell you when it is going to rain or snow, days before it comes, as most of you probably can. Unfortunately, there's not much you can do about the weather, so the TV can be lifesaver.

Also, time your activities. I use my stove timer for mine. Everyone has their own pain tolerance. Mine is 15 to 20 minutes. After that, I lay down (as you know, sitting is not a realistic position with this kind of pain) for 30 minutes. I then continue on that schedule until I start feeling pain during the 15-20 minute time frame or, if I'm lucky, my desired task is finished.

Of course I have a seat cushion, the ring just didn't work for me. I no longer have to use my cane, thanks to my meds, except for if I am going to be out for a bit, then I definitely bring it. It is a godsend at times. And I am proud to say, I am not in the least bit embarrassed about using it when I have to!!!

I think most of all, I have accepted what has been thrown my way. I have just recently been diagnosed with hypothyroidism, but am being treated with one little pill a day and hopefully we won't have to screw with the dose for too long. The hits keep coming. But, I am a strong person and this has made me stronger than I ever thought I could be. I have found out who my real friends and family are and have learned to use my imagination to get around the many stumbling blocks and obstacles thrown my way that I am sure you have come across yourselves.

I hope that my story has helped some of you out there that are fighting to live with this horrible disorder that is soooo misunderstood, not only by family, friends, and the public, but also the physicians that are at all related to this condition. I look forward to reading more of your experiences on this site, which thanks to Jon, is a lifeline for alot of us. Good luck to all and God bless.

Happy Autumn, Kelly

Updated 2005-10-02

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