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?
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| 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.
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| Our photographer caught a picture of me in my glove as Larry carried me to our next photo site. |
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| Another picture of me and my matching glove. |
