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.  

Day 4: The doctor's appointment, the pain pumps, and comments

I had an appointment today to get my pain pumps and dressings.  Pain pumps are these fat grenade-like balls filled with pain meds, and they are sutured into your skin and distribute medication into your incision.  Along with your drains, you carry around a pouch with your pain pumps...and as the meds are used up, the grenades become smaller.  So today the sutures came out and the tubing was pulled out of the incision....and pulled, and pulled and pulled.  It was wild...maybe 15" of tubing X 2 were removed.  Apparently, the tubes have holes in them (kind of like a tiny irrigation hose) and the tubes are laced throughout your incision to give you pain relief.  I do miss the pain relief, but I don't miss carrying them around.

My abdominal incision was unwrapped today as well.  It's healing really well, but I look like Sally from Nightmare before Christmas with a zipper of stiitches going from one hip to the other.  The drains are still doing their thing and will remain in til at least Wednesday.  The breast is bruised but healing fine.  And I'm still really sore and hurting, on pain meds, and unable to do much.

Along with all this, I wanted to write a little about comments.  I know it's really awkward when talking to someone who has cancer, or has undergone surgery because of cancer.  But as difficult as it is, it's also hard on the person.  I talk to family and friends on the phone and I get comments like, "You sound great!  You sound so energetic and happy!  I'm glad you're doing so well."  Or something like that.  I know the caller has good intention.  But the truth is, you don't feel energetic and happy.  You've had a body part that you were born with cut out of you.  It hurts to sit down, stand up, walk, lie down.  Emotionally, you have highs and lows.  You have had cancer.  Is it in the past?  Did they get it all?  Will the pathology report show more in the nodes?  Yes, there's relief because the surgery is behind you.  The worst is over.  But now there's a lot of healing to do...physically and emotionally.  So as encouraging as the comment may seem, it's really not as comforting as intended.

So what do you say?  Just ask, "how are you feeling?" And listen.  Ask if there's anything you can do?  Pick up anything from the market?  Help with anything?  And unless you're immediate family, wait a few weeks before saying you want to come over for a visit, and understand when your idea to visit isn't met with the same enthusiasm.  I know in my case, I can't even get dressed most days, let alone pick up my house.  The idea of having visitors is too much at this point.  Lastly, know that your friend loves you, and appreciates your friendship so much, but this thing that she's going through..it's not always black and white.