PMPS? Or What?

You know the feeling of being bitten by an insect where you get that sting feeling followed by an itch?  And then you have that terrible need to scratch?  Now think of that same feeling, but imagine that your body was numb, so no matter how you scratch or try to remedy that the itch, it doesn't help, because the feeling is not caused by a bite on the surface of your skin, but by nerves that are damaged in your body.  This is what I've been experiencing for the past 3 days.   It's been rough.

Three days ago, I was woken up from my sleep by shooting nerve pains.  The pain started at my incision site below my underarm but deep inside.  It was so intense I didn't know what to do.  Rubbing the area was futile.  As hard as I rubbed, I still couldn't get relief since my incision areas and areas around them are numb.  That first night the itching/stabbing pain lasted about 15 minutes.  The next morning, it came back...on and off throughout the day for short bursts.  By the following evening, I was wincing in pain.  The attacks were lasting longer.  Unable to sleep, I tried an ice pack, then icy hot, then arnica gel.  Nothing worked.  Motrin.... 800 mgs.  No relief.  I got up and tried to research the net.  Googling "Terrible itching pain at incision site after mastectomy" I found a link describing my symptoms and a thread called PMPS or Post Mastectomy Pain Syndrome.  As much as I found relief in reading that others were having symptoms like mine, I am still concerned that this pain is going to be chronic.  What I read stated that there was no "cure" and people were living with the pain.  Up to 30% of post mastectomy women experience this, but the medical community often dismisses it because it's nothing that can be pinpointed, and there's no cure.  

The following day, exhausted, I had to go to work.  The pain was terrible, and throughout the day in my cubicle, I found myself applying pressure to my incision site....pushing, massaging, leaning forward in my chair.  Trying everything possible to get it to stop.  I called the doctor.  "My appointment is not til the 23rd.  But I'm having this terrible pain and I can't seem to get any relief.  I wanted to call and let you know.  The doctor had said that I did have some swelling at my last appointment and I still do.  Is there anything I can take for the pain?"  The receptionist told me she'd discuss it with the surgeon and get back to me.  Fine.  After an hour she called back.  Nothing can be done.  The doctor told me that as long as the breast was not red or hot to the touch, it was okay.  Otherwise, I would just need to let it get better on its own. "The nerves have been cut, and they're regenerating."    I mentioned what I had read about PMPS, but it was dismissed.  "What if I don't get better?"  "You will."  :::shrug:::

Last night I was exhausted from pain, and lack of sleep.  I tried the heating pad on the area.  During the day I had my Rx for Norco refilled.  And today I have been taking it around the clock.  It seems to have helped a bit though it leaves my  head wonky.  I've also limited my caffeine as I read that it over stimulates the nerves and makes you more susceptible to the pain.  The attacks are not as bad though they are still there.  I've also been trying to stretch my arm out during an attack.  In my thinking, I imagine that it's "stretching the nerves" that may be rebelling or pinched or unhappy.

I wanted to post this because this pain was completely unexpected...and not explained to me as a side effect of mastectomy.  You think when you're post op, and healing that you're out of the woods...and then BAM it hits you.  And from what I read, this can be experienced even a year or two (or more) after surgery.  I also wanted to put PMPS out there, in case others are having these feelings/pain.  There's not a lot of info out there, but we're not going crazy.  That feeling of being wrapped in barbed wire is not in your head.  It's in your nerve endings and very real. 

I hope and pray that this will get better and that I do not suffer from this syndrome, but that I'm just healing.  I'm still trying to figure it out.  For now, the pain seems managed, and I'm going to try to get some sleep while I can.