Chapter 17: Challenges, Part 2

Earlier, I mentioned that there are two main challenges I face from my stroke.  I talked about the emotional anxiety and just dealing with sensory overload all too often.  After months of putting it off, I am ready to share my other elephant.

A couple weeks after I had my stroke, I started noticing pain in my left arm.  It goes from my fingertips to my shoulder.  The best way I can describe the pain is an intense stinging feeling and it penetrates and becomes a deep ache all the way to the bone. 

I would compare the stinging to what you feel when your fingers start to warm up after being outside in the winter.  In fact, my arm and hand feel cold to me all the time! But, if you touch my arm, it really isn’t cold to the touch. 

At first, I thought it was my arm “waking up” from the stroke.  It was the part of my body hardest hit.  I couldn’t lift my arm.  I couldn’t use my hands.  It just hung there.  So when I started feeling something, I was excited.

I mentioned my pain to my Occupational Therapists.  They didn’t have any answers.  It wasn’t because my arm was waking up.  They did try several heat treatments with warm paraffin or a mud clay wrap.  These eased the intensity of the pain, but weren’t cures.

As the months of therapy went on and I regained a lot of the use of my arm and hand, the pain didn’t ease at all.  I mentioned my pain to my neurologist.  He wasn’t sure what it was, but started prescribing different medications to try to help with the pain.  We would try one thing…no good.  Then try another.  Some, like pills for nerve damage, just made the pain more intense!  I think it was because my nerves are fine, it’s my brain that’s messed up.

I was frustrated by the lack of help from my doctor. I was in so much pain and just wanted someone to give me some answers.  So Larry started searching online for some answers.  He typed in my symptoms and linked them to strokes and then to hemorrhagic strokes and finally found a diagnosis!

He had me read the article on Chronic Post-stroke Pain (CPSP) or Thalamic Syndrome.  As I read, I soon discovered what an elite group I'm in!  Hemorrhagic strokes account for 13% of all strokes.  So, not too many people get bleeding strokes.  Only 8-10% of stroke victims suffer from CPSP.  I’m in a small group within an even smaller group of people. (No wonder my doctor didn’t know what was wrong.)  I read that you are more likely to get CPSP if your stroke was on the right side.  Yes, that’s me!  CPSP occurs if you damaged your thalamus, the sensory area of your brain.  Yep, another check!

Then, I read the symptoms: burning, aching, and prickling.  Constant pain.  Aggravated by temperature changes.  Feels more pain when emotionally stressed or cold.  This was also true for me.

I had found my diagnosis!  Sadly, as I went on to read that there isn’t a cure for this.  No medication really helps because the problem is with my brain.  It has a big hole in it and it is misinterpreting messages.  My brain thinks there is something wrong with my arm when in reality, physically my arm is fine.  I guess you could compare it to amputees who can still feel the “ghost” arm.  And with CPSP, my brain could send even more messed up messages down the road and make the pain feel get worse! 

As I am trying to find the blessings in this challenge, here is one… thankfully my pain seems to be staying the same and not getting worse.  And I’m thankful to know what it is.  It’s amazing how comforting it is just to have an answer to what I am facing.

My challenge with this facet of my stroke is learning coping techniques and coming to terms with knowing it’s probably here to stay.

My biggest help with this is staying warm.  I have learned that warmth takes the edge off the pain.  It is still there, but not as intense.  

I now take baths to soak my arm every day and often more than once a day depending on the pain.  So I'm very clean. ;-)

I have started my own little fashion trend. (Okay, Michael Jackson started it, and I am continuing it.) I wear a glove on my left hand all day!  Yes, even in the summer. 

After much experimenting, I discovered that the best gloves for me are cashmere.  For one, they are very warm.  Two, I can find them in longer lengths and it’s my whole arm that needs help, not just my hand. And then, I also had to address the sensory part of my stroke.  Other gloves felt too tight, I was aware of them and so they drove me nuts!  I am slowly getting quite a collection of gloves in all colors.  Who knew they would become my new accessory? 

Some of my new fashion accessories.

I bought two electric blankets.  One is a throw to wrap around my arm while I am watching TV or trying to work on the computer downstairs. The other is for my bed to help me sleep at night.  I’m most aware of the pain at night; I think because there are no distractions.  So I often lay in bed with my blanket wrapped around my arm waiting for the sleepiness to overcome the pain awareness.  It’s quite the battle sometimes.

I don’t know why this challenge in my stroke is so hard to write about.  It has nothing to do with emotions and anxiety, really.  But, I guess because it makes me cry.  It never shuts off and wears me down; some days I just can’t deal with it.  It’s hard facing something that you know won’t go away.  

So that is another coping technique: 
Don’t look at how long you have to deal with it, just deal with it one day at a time.

Our photographer caught a picture of me in my glove as Larry carried me to our next photo site.

Another picture of me and my matching glove.