Chronic Chiari, The Pain Problem

Ask any one with Chiari and they will tell you that pain is one of the most challenging symptoms.  It’s also one of the most challenging symptoms to treat.   Pain is the most commonly discussed symptom amongst Chiari patients both in person, on forums, through social media and with our doctors.  The most challenging thing about pain is that there is no singular treatment method that is 100% effective.  Different treatments garner different results with different patients at different times. In short, coping with pain can be a extremely difficult at best. 

We have all seen some version of this pain chart below. Now, I might be naive but I choose to believe that the average person experiences a pain level of 0 or 1 on a daily basis. Whereas, I experience a pain level between 4-7 on most days. As you can clearly see we are talking about pain that interferes with life. I will take this opportunity to explain that I prefer not to rely on western medicine for pain control/relief. I will not take medication until my pain level reaches a 7 or 8 simply because I hate that medication slows me down, makes me sleepy and interferes with my thought process. In short, my opinion of pain medication is that it sucks.

Please allow me a moment to explain that I am not a doctor or nurse.  I am just a girl who has been dealing with pain my entire life who has taken the time to explore alternative treatment to pain.  As with any new program please check with your doctor to ensure that any treatment or therapy would not interfere with your current medical regime. 

We all know that endorphins are those feel good chemicals that our bodies desire.  So it would seem as simple as more endorphins equates to less pain.  Unfortunately, its not that simple.  It’s not like we can load up on synthetic endorphins and the pain will magically disappear.  I have found that it takes many smaller steps in order to keep the pain at at tolerable level.    Keeping our bodies relaxed is the key in dealing with the stress of pain.  Its only natural that pain brings stress which causes tension in our bodies.  I believe that tension increases the level at which we feel pain.  Our natural reaction to a shooting pain is tense up the muscles in the area where the pain is felt.  What we really need to learn is to relax the muscles instead.  This is not an easy task to accomplish.  Here are a few techniques I use to cope with pain and all its glory.

• 4, 7, 4 Breathing – This is definitely my favorite technique.  It’s simple to learn and you can always have it with you.  Simply inhale for 4 seconds, exhale for 7 seconds, inhale for 4, exhale for 7 and so on.  Your body naturally relaxes after exhaling and before inhaling.  This technique extends that natural relaxation period. 

• Guided Visualization – Audio guided visualization allows you to take a mini vacation without ever leaving the comfort of your house.  After 10-20 minutes you will find that you are more relaxed and refreshed. It’s a simple tool and a great alternative to medication. A simple Google search will find dozens of free guided visualizations available for download.

• Writing – Whether blogging, journaling, letter writing, short stories or just free flow, writing provides an outlet to safely say all the negative things that get stuck in my head.  Especially when I am having a particularly bad day, I find it safer to write all the awful thoughts floating around my head on paper rather than spewing them at my loved ones.  By writing them down, I am able to remove them from my head in order to move more positive thoughts in.

• Music –  Some days are more of struggle than others.  I use music to relax and focus on removing the pain from my body.  I lie down, listen to music paired with nature sounds and focus my attention on relaxing each and every part of my body.  After 20 minutes I get find enough relief to face the rest of my day.

• Massage – I am blessed that my husband is willing and able to help me through my pain. Human touch is an extremely powerful tool. Massage has been successfully practiced for thousands of years with good reason. Touch is one of the most comforting, healing things I have ever found.  Luckily, my husband also agrees with this theory and helps me through some of the really difficult times.

• Exercise – Regular exercise keeps the endorphins flowing.  It brings about a natural harmony to the body that can be found through no other therapy.  While most Chiarians will never be able to participate in hard core regimes, simple low impact exercise will still provide plenty of benefit without the damage. 

• Prayer/Meditation – I have my own personal practice of prayer and meditation.  It can be defined as both prayer/meditation and as neither.  I allow myself the freedom to commune with God about many things in life while practicing the discipline of meditation.  I have found that relying on a higher power allows me the freedom to not worry about things that are beyond my control.

• Yoga – Practicing yoga allows my body to remain flexible which helps remind my body to remain relaxed while experiencing pain.  Keeping my body relaxed and fluid is the biggest asset when battling chronic pain.  Yoga allows me to practice relaxation in the face of challenging situations.

• Communication – Being able to express my feelings calmly also helps me to remain calm when facing extreme pain.  Having the peace of mind to remain in control of my emotions helps be rationalize the pain.  Keeping my emotions in check provides me the ability to express the discomfort without increasing my pain level.  This requires that I practice remaining calm through all sorts of frustrating situations.

• Cold Therapy – Ice packs have become my friends.  Western medicine is now discovering the benefits of using cold therapy to treat spinal cord injuries.  I have discovered that combining cold therapy with music, massage or guided visualization is more effective and expeditious when coping with extreme pain.   Although I have several of the new gel ice packs, I will always prefer the old school ones with a reservoir for placing ice cubes.

• Laughter  - Being able to find the humor in any situation makes it easier to cope with whatever I am facing.  I always try to find some crazy comparison to remind myself that things can be worse. If I am laid up in bed with an extreme migraine, covered in ice packs with my earbuds shoved in my ears, I ask myself how it would feel to have a foreign tribe of ancient warriors performing a loud chant while surrounding my bed.  Then I am able to remain thankful for my soft bed, my quiet house and the ability to rest.

I always try to remember that pain alone will not kill me.  It is merely an unpleasant sensation that I must deal with on a regular basis.  Although, it has changed the course of my life I refuse to let it change the quality of my life.  While it can sap the fun out of some things by rendering me unable to participate in certain events, I refuse to let it take any fun out of the things I can enjoy.  I remind myself that the things that I do get to enjoy are priceless and my relationships are what define the quality of my life. Pain is a language I speak fluently.  Although, I am not fond of it, it is a fact in my life.  I will always live with pain and  I will always live with Chiari Malformation; so, I might as well learn to live well with both.