I think that is one of the hardest things...family and friends that see us suffer this way; it tears them up so much.
I always hate when I talk to docs about various BPI issues and when I bring up pain, they usually say "oh, well there is pain mangement" in a very offhand manner. It makes me so mad.
However, mangemant is actually a good word in a way b/c that is exactly what you do w/ chronic pain (or illness like fybromyalgia, arthritis etc). As many have said here, there bad days, even horriffic days, but there are also many good days...days of little or no pain. And the really weird thing is, it DOES seem like the less pain meds, the less pain after awhile.
There are always going to be flare ups, and sometimes it takes a really long time to break a cycle of prolonged terrible pain. But if you can figure out what works best for you to break that particular cycle, then you will find your own body and mind can do the rest naturally if you help it, and be off most or many of the drugs. Sometimes to break that cycle, one has to turn to more potent drugs or therapy, but it should always been seen as short term, to get out off that worst cycle, when nothing else works and your serotonin is just getting too low and depression is setting in, which only makes it even lower, and the pain worse.
Keeping busy, doing things for others really helps not only to distract, but it makes you feel good about yourself and feel your life has meaning and purpose. Even with our BPI limitations, we can volunteer in sooo many areas.
It is important to know and believe that even in the worst pain, there WILL be an end to it, and that it will feel better eventually. If one knows and believes that, it helps to get thru it. Yes it is true, it may come back, but I live for the good times, not in fear of the bad times, or letting the bad stuff control me or my life. I refuse to give over to it, altho trust me, it is VERY hard, and I have to fight VERY hard sometimes, and sometimes I just want to have it all stop, I am so weary of it.
But then morning comes, a new day begins, and with that, hope and possibilties...which is all any of us can want for.
fire
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Re: fire
My son went through the same pain with the burning and some days the pain was so bad he would hit his arm on the walls. He did have surgery, and it helped with pain a lot. Ryan can be reached at ryan@ubpn.org. Ask him about the pain and the surgery he went through and anything else you need. He will help where he can.
Good luck and remember we are all pulling for you, just take each day as it comes.
Hugs to you,
Karen
Good luck and remember we are all pulling for you, just take each day as it comes.
Hugs to you,
Karen
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- Injury Description, Date, extent, surgical intervention etc: MVA in 2001, nerve graph in 2002, Median Nerve Transfer in 2004 and an unsuccessful Gracillis Muscle Transfer in 2006. I am living life and loving it! Feel free to contact me :)
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Re: fire
NICE Jacko! Thanks for that wisdom!