Pain Management with Scleroderma




If you missed the Treatment Diaries Chat about Scleroderma on 3/5/2013, we talked briefly about the stigma of pain medication.  (check it out HERE

“I don’t want to depend on pain medication.”
Sometimes, it’s what we need to do.
Stop the pain medication stigma already! 

We’ve all said it.   Of course, in a perfect world where debilitating pain is temporary, that would be a valid statement.  But I don’t live in that world.  Pain medication keeps me functioning and makes it easier for me to move around.  I have reached a point where I can exercise.  Overall, I feel good, but the truth is: I am in constant pain.  It’s decreasing the level of pain that has allowed me to function as highly as I do.  Pain medication makes my level of pain tolerable enough to function.  Functioning leads to doing things like getting dressed, leaving the house, finding an activity I like to do and doing the activity.

This did not happen overnight.  As I had mentioned in the Treatment Diaries Chat, in early days of my scleroderma diagnosis, I used alcohol for pain relief and depression treatment.  “Not ideal”, is a gentle way to describe that choice, but it was my choice nonetheless.  I was in college and drinking fit my budget and was lot more fun than standing in line at the pharmacy.

Later, I moved on to popping Percocet like Pezz.  Also not the best choice.  The “nice” thing about using Percocet was it did make me feel pain free, but like everything, it did not last and it came at a cost.  Yes, I felt no pain, but it also created another problem:  I was loosing my range of motion in my hands and wrists.  The “S” in CREST Syndrome, (Limited Scleroderma) is sclerodactyly.  My hands were contracting into a claw and my wrists fused.  I could not feel the changes and because I felt no pain I was more likely to engage in activity that would cause injuries to my knuckles and wrists, breaking open the skin on impact into various obstacles.  

Because my hands were curling into a claw, I had to learn my limitations.  Pain, although something that sucks, is a tool to let our bodies now when something is wrong.  Because I could not feel the pain of my hands contracting, I paid little attention to the changes and I did not take proper precautions to protect my hands from injury.  Of course I can’t protect anything from all injures, but there are injuries that are preventable.  Let me give you an example using a dryer handle.

Today, I have a stackable washer/dryer unit in my apartment.  I use a big silicone spoon to open the dryer door.  (See this Turtle-ism to learn how the “right” tool is entirely subjective)  I use the spoon because it hurts to use my fingers to open the dryer door.  Let me walk you through a scenario that makes opening the dryer door without a tool a problem:

Back when I was using Percocet, I would have kept using my fingers because I would not feel the initial pain after using my fingers to open the dryer door.  I would not be motivated to find a tool instead.  Not using a tool would result in injury.  I could overextend tightened skin and atrophied muscles in my hands.  Eventually, a pressure sore would appear and I  could do something unrelated to dryer opening, like bump it on the kitchen table and the my skin would break open.  From there, we’d move on to a sore that would heal slowly and be susceptible to infection.  And that’s a whole other post, but that’s an example of the path of total pain relief for long term chronic pain.

Another problem with “feeling no pain” is tolerance.   I LOVE feeling no pain.  And I don’t mean high or buzzed, I mean feeling NO pain.  But, in order to keep feeling no pain, the dose of pain medicine needs to be increased as tolerance builds.  Next thing you know, you’re taking enough pills every day to drop a three hundred pound Sumo wrestler when you realize the pills have stopped working.  So, you stop taking the pills and wish for death while riding the roller coaster of withdrawal from opiates.  If my husband (at the time) was not kind enough to put me in the car and drive around for hours while I hung out the window like a puppy, I would not have been able to follow through with stopping the Percocet.  I had the tolerance and I was one step away from complete addiction and abuse.

It was still no picnic after I kicked Percocet.  I still had to deal with the constant pain of scleroderma.  The pain medications were masking my depression.  The grief of loosing the use of my hands to scleroderma was so overwhelming, I stopped eating.  Luckily, my scleroderma and all medical conditions are covered by socialist Veteran’s Healthcare.  After dropping to 96 pounds fully clothed, in combat boots, I visited the mental health department of the Veterans Hospital for treatment of severe depression and anxiety disorder.  (For more info, read HERE)

After treatment with medication and therapy, my depression is managed.  Eventually, I became a mom, then was diagnosed with sarcoidosis.  During that time, I accepted  that if I wanted to be present for the good times, that I had to leave the house in pain.  And once I got out, I started to feel better.  There were many times that being out did create more pain ad I did go home early, but I learned to “celebrate” that I did indeed go.

This was a long journey and I find it difficult to explain every aspect in a shot blog post, so I will elaborate more in future posts.  What I hope you who are reading take from this is, the best outcome may not be the outcome we want.  It’s like the movie Groundhog Day.  Bill Murray’s character is trapped.  There is no escaping February 2.  But once he learns to make the best of his situation and exists in the realm of this situation, he then finds freedom and peace within the situation.  Living February 2nd is not his anticipated outcome, but Bill Murray’s character finding happiness accepting his life reliving Ground Hog Day,  every day, is the best possible outcome for his situation.  Life with scleroderma and starting my day with one Vicodin to take the edge off the pain while getting dressed is not MY ideal outcome, but it is the best possible outcome.  Because I take that one Vicodin, I follow through with getting dressed.  I don’t stop and put on sweatpants instead of jeans and go back to bed, overwhelmed with pain.   I’m still in pain, but it does not get worse and my stress level remain low because my pain is controlled to a point I can tolerate.  I shower, do my hair, get dressed and begin my day.  Anyone who has trouble buttoning their own pants or holding a blow dryer knows what a long and tedious process this is. But once I conquer those daily activities,  I feel motivated to continue my day and do something.  

Yes, I do depend on pain meds.  I’m not ashamed or afraid of being judged.  I use them as they are meant to be used by someone with a chronic, soul sucking illness like scleroderma:  I use them so that I can function at a level that enables me to be a good mom to my son, and be there for him.   And I plan to be here for him a long time.