Monday, October 26, 2015

Phantom Pain - How do I deal with it?

In the spirit of Halloween, I have decided to write a little about the "Ghost" in my life. Phantom pains are one of the most annoying aspects of being an Amputee, 95% of amputees report at least some form of pain or discomfort coming from the non-existent extremity. For some, the pain is incredible, so bad that it keeps them awake at nights. For most pain medication does not work that well, and at best is only a temporary solution that is fraught with side-effects. I happen to be one of the lucky ones that only gets the sensations occasionally. It is always a surprise and confusing for me when it happens.

I have told you before that I keep a journal, in which I keep a record of size, weight, general notes on my activity levels and how many socks I wore each day. It has become a bit of a routine, but I have added a note about phantom sensations and pain that I feel in my "non foot'. While it is not a definitive study, I am building a database for a case study in phantom sensations. I am finding that if I wear extra socks during the day, I have an increased chance of having phantom pain, I have also noted what I did to relieve the pain. I do not want to take any medication and I have been looking for solutions. Journals are helpful when you start to feel overwhelmed. With some amputees, the pain is so severe it is debilitating, as well as so frequent as it seems to never go away. Keeping good records of the pains and times you feel them is helpful to your doctor in planning a course of action to relieve it.

Which brings us to the next item, effective treatment of the problem. Where do you go? What methods do you use yourself? Does medication help you? Or does it simply mask the problem. What do you do if your doctor feels that this is a physiological issue and not a medical (Yes, there are still some witch-doctors out there that do not believe in phantom pain, despite all the research that has been done) I can only speak of my personal experiences, they may be helpful to some, comical to others and totally useless to most. I will speak of last night, and how I overcame the sensations. Let's go to my Journal Entry:

Size AM 40 cm
Size PM 42 cm
Exercise: 13.1 miles bike ride,8,210 stepsSock Level: 0730 2 / 1000 5 / 1430 7 /1530 5 
Pain increased with too much sock level - May need to reduce level tomorrow.NIGHT: After removing leg, began to feel pain in L Big toe and exterior ankle area, pain increased to burning stabbing pain Level 4/5. Massage of residual limb did not reduce pain. Rolled to pronate position, hyperextended knee, pain began to abate almost immediately.

I do not know why hyperextending my knee while in the prone position helped reduce the pain, but I know that it worked. It has worked in the past and some of my journal entries get rather detailed on things that I have tried that did not work. I do know that from previous journal entries, whenever I use too many socks during the day, I tend to suffer more severe pain that evening. That appears to be my trigger. It is probably different for different people. I do know a few things for certain. First, Phantom pain is real, not psychological, if your physician disagrees, suggest to him that he should research it a little more, it might change his mind. (My doctor is one of this crowd by the way) and Second, simple solutions do not work for everyone. I have talked with many amputees, some of whom are in constant pain, who are seeking a rather expensive treatment where the nerve endings are sealed with a cryogenic probe. I am awaiting their reports on the success of these procedures.

 I suggest that everyone that suffers from phantom pain keeps a journal, It will help keep the perspective on a day to day basis, and keep you from feeling overwhelmed by a consistent, nagging problem. The pain is no joke, it is there, whether or not there is an obvious cause. Remember your brain usually is spot on when it comes to pain, there is a cause and effect to most pain problems, keeping a record of what you did during the day may show you a pattern that you can adjust to see if it helps in relieving the issue.

Who knows, it might just work for you, too.

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