Hi Karen
Welcome to the board! If you have been visiting us for two years on and off, I am sure you have read lots of ideas on managing the pain we experience with this horrible disorder.
I have just had another consultation with a pain specialist in Sydney and she actually mostly deals with cancer patients and a few chronic pain sufferers. I am currently taking 20mg oxycontin twice daily for pain with oxycodone for breakthrough pain. She has also asked me to recommence taking paracetamol 4 times daily, which I have started to do.
You have probably also read that I use a number of other diversional therapies to deal with my pain, including breathing and meditation exercises as well as visualisation and gentle walking. I also read, listen to music and read. Reading has been very helpful to me, especially when sleep escapes me because of the pain. I also take amitryptiline at night too, this drug is used for depression and also helps as a pain analgesia. I have valium as a back-up for the days when oxycontin & oxycodone aren't enough.
I also have a pain counselor, and I have found this a great release for the pent up tensions that naturally happen when one is dealing with pain. By getting all of my feelings out of my system it helps me to keep everything in a more realistic light and not turn minor incidences into "major "drama's" which is what tends to happen when we bottle things up for too long. Another strategy which I find useful is writing. Such as replying to questions such as yours, relating my personal experiences to others and trying to offer support and friendship. I also have a personal journal where I record my feelings for my husband and family. This journal is just for me and not meant to be read by anyone else. I also encourage my daughters to write in a journal. Each of them has received one over a period of time and we enjoy writing notes to each other, sometimes the girls will draw a picture, write a poem or just tell us how much they love us! . When they have something they want us to read and respond to, the girls will leave their journal on our bed. It is always a lovely surprise to walk into the bedroom, and find that one of the girls has written to us. Sometimes we will sit down & read over some of the things we have written in the past and have a giggle or talk about whatever is bothering them.
Karen, the best way for you to find ways that suit you best is to experiment. Try some of the suggestions that we make on the board and the things you try that work, great! Add them to your personal toll box of "diversional therapies", and discard those that don't help you. Each of us is different, and what works for one, may not necessarily work for another. That's ok, because we are all different, live different lifestyles under many different circumstances. The amount and type of support you have from family & friends also impacts on your ability to cope with your pain too.
I am glad that you have finally found the courage to write and ask us a question, I hope that we are able to offer you some hope, help & friendship.
Joy & blessings for the season
Jo (Australia)
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