Chronic Pain & Cerebral Palsy

I had a different plan for today but last week ended horribly for me (and for one reason only) so I thought it would be a good idea to address the why of it.

Chronic Pain.

I’m no stranger to it at this point, as you’ll see. There are times when I’m able to manage it and go on with my day, and then there are other days when I wonder if I’ll ever get a reprieve from it.

It’s common for people with CP to suffer from chronic pain (although I’m unsure of the actual numbers) and chronic pain knows no age limits either. Every time I hear someone say, “You’re so young, you can’t be in that much pain,” I feel my blood pressure rise and my eyes want to pop out of my head (neither of which is helpful to alleviating pain).

Think about it for a minute, CP causes muscles to spasm and contract more (or less) than they should. Now think about how you feel after one muscle spasm or when your trick knee acts up. Now think about that happening to you without warning throughout your entire life. It gets painful.

The thing is it’s hard to recognize if you’ve dealt with it for as long as you can remember.

This is a hard thing for me to address for a few reasons. Pain management isn’t one size fits all. So in regards to this post I’ll be talking about my own personal experience with pain management.

Another important point I think I should address is that I may not have any allergies to medications but there are times when things just go weird. Baclofen makes me incredibly anxious, to the point where I had panic attacks. Prednisone makes me lose my appetite. A medication pulled off the market for causing heart problems and suicidal tendencies worked great for me. Antidepressants seemed to work well for me too.

I’m not good in the self-care department. In fact my pain became so bad that I never thought there would be a solution for it. I resolved that I’d rather run myself into the ground and have a good time than be cautious and bored.

It’s hard for me to pin point when the chronic pain started. My guess is that it was sometime in college. Both of the schools I attended were on relatively small campuses but with my schedule there was at least one day a week when I was on the go for 12 hours straight. Not good, for anybody.

A year out of college my pain was still intense. There were days I’d be on the phone sobbing to someone. The pain was out of control, but what pushed me over the edge was that no one knew what to do for it. I couldn’t wrap my head around the fact that I ran around the nation’s capital for years and now I could barely stand to go anywhere.

I started seeing a physiatrist, she wrote me a bunch of prescriptions & I set up a bunch of appointments, brace clinic, wheelchair clinic, PT evaluation, and dropped off prescriptions, all in the hopes that my pain would become manageable.

I spent the next few months in PT which included aqua therapy, heat treatments, stretching, strengthening, and quality time with a TENS unit. Each land PT session started with the giving of a number, how bad was my pain that particular day. Once it was determined that my pain wouldn’t probably ever get below a “3” I was discharged.

For the record I detest the 1-10 pain scale. When I was at my worst point the numbers meant nothing to me pain was pain. I’d just make up a number so that “box could be checked off.” I understand the ideology behind it but for me it was not practical.

Halfway through my missionary contract the pain came back, and in full force, and then some. Something that started in my knees was now spreading to my back, ankles, hips, spine, I was getting migraines more frequently, and at times even my upper body would hurt from trying to compensate for the lower half.

I decided to get a second opinion on my pain and saw a different physiatrist. She (and an NP) gave me different medications to try and referred me to a surgeon to get his opinion (and x-rays). They could tell I was getting sick and tired of being sick and tired and by this point I was taking more medication to help deal with side effects from my original medications.

After talking it over with the NP, the surgeon, and the physiatrist I realized I agreed with their philosophy, even if that meant more aggressive and invasive treatment. In the long run it seemed like less punishment on my body for the life I had in mind for myself.

Sometimes the best way to manage pain is to do what most people wouldn’t choose to do, like have a pump implanted or have surgery.

It’s also important to remember that even different members of your medical team will have different ideas on how to manage pain. A physiatrist may have no problem with taking ibuprofen all day every day at prescription doses. An exercise physiologist may not want you to take ibuprofen for more than a few days because of long term stomach damage.

The moral of this ridiculously long story? There are a lot of options when it comes to pain management but there’s no golden rule or “how to.” It’s often a trial and error process. If you don’t like something try something else, get a second opinion. Most importantly try and find the real source of the pain, if its spasm, treat the spasm, if its joint displacement look into getting it fixed.

Think of it like having a leak in your pipe. You can fix all the damage from the leak all you want but nothing’s really going to be fixed unless you fix the pipe itself. (Excuse the analogy; I’ve had a leaking bathroom so it came to mind) And there are factors like weather, air pressure, stress, sitting for too long, too much activity, (and if you’re a girl or have a girl PMS etc. really isn’t your friend) that should be considered too.

If you don’t treat the original source things are just going to get worse.

And even treating the original source doesn’t always mean you’ll be home free forever (although that would be nice), especially if you have a long-term diagnosis. If you’re lucky you have more good days than bad days. Honestly I think that’s what most people ask for whether or not you have a chronic pain diagnosis.

I still have days when staying in bed feels like the only option but I still try to power through (although that doesn’t always work). I’m lucky enough to now know when a bad day may or may not be in future. I try to treat the cause before the pain hits full force or deal with the lingering aftereffects.

Regardless of what kind of day I’m having I’m thankful every day of the marvels of modern medicine, because without it my life would look much different than it does today.

*A similar version of this post was published previously on January 18, 2011


4 thoughts on “Chronic Pain & Cerebral Palsy

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