Congenital scoliosis plus arthritis

Barbara B -

Posted 2010-04-11

This is a round-a-bout tale of tailbone pain. It was not until 2003 that I learned I had back problems. I learned that I had primary and secondary scoliosis, probably congenital. I was in middle age and no doctor had ever told me about this in my life. Why, I will never understand.

Years before I had began to be turned down for runway modeling work and could not understand why. One day someone told me one of my shoulders was higher than the other. I thought it must be because of the shoulder bags I always carried so I stopped that. Shortly afterward I moved back to California and married so forgot about my shoulders. That was about 30 years ago…hard to believe it has been so long.

I also had other problems with my back by then, one of which is osteoarthritis. At first I thought the tailbone pain was due to a flare up of arthritis because I did not seem to have it constantly although driving over an hour was always painful after that diagnosis in 2003.

I have been taking Vicodin for about 8 years for the pain in my back along with Soma. I was also prescribed Piroxicam but did not take it much because it was so toxic. It did help a lot but I understand it has been taken off of the market now.

I guess I just live with pain that is helped a lot by the medication but I still experience it every day…one cannot constantly take pain medication or it loses its therapeutic effect and who knows what the long term effects of the medications we do take are. It is a delicate balance.

I have learned to lay down, to sleep and watch TV and read on my side. I find that a heating pad helps. Focusing on other things also helps.

I wonder if Social Security will pay for the surgery or will in the future. I wonder if I should try to have the surgery and what it is like. What is life like post surgery? Are people happier and glad they opted for it? Whenever I ask about that the spine specialists always tell me that because of the curvature of my spine I cannot have surgery but maybe in the tailbone area it would be OK.

I wonder how many people who have the tailbone pain also have scoliosis or other back issues. It may be interesting to do an unscientific, unofficial study on that.

I fear that as the osteoarthritis worsens with age this will worsen as well. I wonder about the experience of others with this progression.

I have not used any special pillows (Only 10-20 bed pillows) and I am happy to see them mentioned and will make or buy one. I also like the idea of using the neck pillow that I never use on planes because of the shape of the seat. Now I will have a use for it!

Not being able to stay in one position very long is hard…it makes doing research or writing at the laptop more challenging. I wonder if spending time on an inversion table (hanging upside down) would help at all (part of the time, of course). In this and many other things, for me, taking it all a day at a time is important. It keeps me from being overwhelmed.

About ten years ago I was diagnosed with severe depression. This is just one more thing to cope with yet I know that there are so many people in the world who have so much more to bear. We all have a story. It is OK to not have an idyllic life although we long for it naturally. These difficulties do create character and I believe we would not experience the opportunity for personal growth if we did not have to bear the things we do but it does seem a bit much sometimes.

My mother died in January and it has hit me hard. I cannot sleep and have no appetite. I wonder if my sorrow about that has triggered another episode of the tailbone pain. The mind-body connection is so much more powerful than we realized in the past. Sorrow may ignite inflammation and keep the fires burning. I suppose that it why it is so critical to have a sense of humor and to have a sense of joy about all that is beautiful in the world. There are many beautiful distractions and I am very good at becoming distracted.

I am very happy to find this community and to know that I am not the only one simply because it affirms that this sort of thing is part of the human condition.

I have a big glass of Merlot in the evening. That is what I do at night rather than taking another pain pill. I take a tranquilizer and have a glass of red wine and a tiny square of dark chocolate. I look forward to that every day. When I run out of the tranquilizer then I have trouble sleeping and if I do fall asleep right away I wake about 1am and cannot fall asleep until 3-4am

I also take a baby aspirin every morning and evening, for my heart and because it helps with inflammation. Does anyone else do this, find it helpful?

Thank you for allowing me to join your community. Thanks as well for all that you have shared on the website. It is helping me a lot.

Barbara B

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