CRPS

As a result of repeated surgeries to my left ankle, I have unfortunately developed Complex Regional Pain Syndrome.  This is a nervous system disorder and is my body's unfortunate response to the repeated trauma in my foot.  This is why I am having such sensitivity and nerve pain.

The special pain doctor I am now seeing diagnosed the condition, and my tumor surgeon agrees.  There is no way to know who will develop this secondary condition but it is most common in wrists and ankles.  Just like with the Giant Cell Tumor I am in the unlucky minority.

I have all the classic symptoms of this condition.  Extreme sensitivity and nerve pain, swelling and redness, shiny looking skin, dry skin, and a strange bruise like pattern.  While my sensitivity is limited to my foot, my pain extends to my knee.  For example, I can't cross my legs left over right because the pressure on my calf is too painful or I can't maintain child's pose in yoga because its too much pressure on my calf.

My left foot literally hurts all the time.  My brain continues to send a signal that I have a burn or an open wound over the top of my foot and on my toes.  Its not extreme pain but it is extremely distracting.  Imagine the annoyance of a blister that never ever heals.  My shoe is always bothering me and my sock is always bothering me but I can't go barefoot.  The air literally bothers my foot.  I need a sock to block out some of the sensation so I seek out soft socks without too big of a seam.

Meanwhile there is literally nothing wrong with my foot, its all in my brain and my nervous system which is really strange and hard to process.  Its enough to drive a person crazy.

The primary medication for this is Gabapentin and we know that's not an option for me.  My pain DR currently has me on Cymbalta which is for depression and then also helps nerve pain.  It doesn't affect my sensitivity but it does alleviate the random jolts of electric pain I sometimes get.  Depression is a side effect of this condition, so I guess anti-depressants are my new normal.  As much as I have counseled parishioners to get on meds if needed, it has been a struggle for me to accept this as my only way forward.  We may add Lyrica later, which has the same risks as Gabapentin but hopefully with a system full of Cymbalta I can do it.  Who knows.

In a week or so I will go in for a sympathetic nerve block in my lumbar region.  I am terrified of this as I hate back stuff but oh well, I hope it will help.  Then I have three sessions of "de-sensitizing" physical therapy which will no doubt be painful.  I'll write and tell you about all the ways I am being tortured.

This has been an extremely difficult New Year and I am really working on holding on to hope.  That's my resolution.  Keep hope alive.

I was joking with Lars about how awful this all is.  The diagnosis is chronic pain and the plan is
1. we put you on meds so you don't go crazy
2. we stick needles in your back
3. we torture you repeatedly
4. surgery again

It can be hard to keep hopes up.  Every time someone asks me if my foot is better I don't know what to say.  People look so hopeful, and while I have recovered from surgery my foot is not better and not getting better.  So, I usually resort to simply shrugging my shoulders, my foots ok.  Right now I just keep going and am thankful the pain is simply an annoyance and not unbearable.  I can power through my day and I can sleep most nights.

But I miss my old life . . . a lot.