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Prostate Cancer
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Posted 6/27/2013 3:35 PM (GMT 0)
P.S. Sephie:

I copied and pasted this portion of an update I left at HW CP, you mind find it an interesting change in my situation.

I never made the connection in the past, until I became a CP person. I have had "burning patches" episodes most of my adult life. They seem to be hemispherical (can't believe I spelled that correctly).

Use to have them on my head a lot. It would only be the entire left side or right side of my head and face. From scalp down to my neck, evenly divided. Sometimes they would last an hour or two, and at others, several days. No relief was found. And over the years, several neurologists later, no answer or diagnosis was ever made. But years ago, no one talked about CRPS.

I have had them on my arms, my legs, my thighs, my feet, my hands (top side only), but only on one side of my body or the other, never on both sides at the same time.

The only way I can describe them, is it feels like a very bad sunburn. Very sensitive to touch, burny feeling. When on my head, can't brush my hair as it hurts too much. Never any redness to the naked eye, but hurts like a bad sunburn.

Now with my pain spreading down the entire right side of my body over the past year in particular, and with a severe burning patch episode on that same side, perhaps there is a connection.
Posted 6/27/2013 11:14 PM (GMT 0)
Yes, it will involve various levels of nerve-testing, among other diagnostic tools. It's also one of those "eliminate everything else" along the way.

No, never any rashes, skin tone/color looks normal, just the burning I describe.

In major pain tonight, the burning has come back with a vengeance. I stood on my feet too long today, then went to a major store (more walking and standing), then mowed my yard (on a tractor).

Spent 2 1/2 hours laying down, even with max. pain meds in me, extreme pain. Had the normal chronic pain from hips to feet (the achy/gnawing pain), plus the burning inside my bones/veins feeling when I have severe pain, and then burning patches on the top of my thighs to my knees. The triple whammy.

Couldn't sleep, hurt too much, even laying down, that's when I feel like I am in pain hell. Whatever is going on, is really starting to escalate. My worse fear (not backed up by fact or diagnosis) is that it is CRPS in an advanced state - when, from what I read, it can be very difficult to control. For the first time ever this afternoon, needed my cane to even walk inside my house, every step was agony.

There has to be answers and help out there, it can't come soon enough for me. I am ready to have all this pain end.

david
Posted 6/28/2013 12:29 AM (GMT 0)
Hey David,

Sounds like you have the communication issues all under control now with the help of your nurse. Yes, when you have a good nurse looking out for you it makes the medical service much smoother. And, you have a nurse/wife! I liked what you said about patience, something I have to remember when I am anxious to get service or an answer. When my wife and I moved to a new area 4 hrs. away after retirement, we had to find new doctors after 15 years with the same ones.

I admire you for your easy going way and persistence in dealing with PCa.

Robert 

Posted 6/28/2013 12:44 AM (GMT 0)
Thank you, Robert. Everyone has a different tolerance with patience. Mine has been high all my adult life, takes a lot to get me excited one way or the other. I don't like burning bridges with people, learned that many years ago. And getting ugly with people (none of us are perfect), rarely gets you the desired results. What's that old saying? You get further with sugar than with vinegar.

david
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