the pain game.

We all feel pain in our lives, life is "suffering" in the most base way as at least some point in your life, you will feel physical pain. Until I got sick, I had no idea how many different kinds of pain there are. Because my diseases are systemic, I have pain in my joints, muscles, as well as lots and lots of nerve pain. The sensations I will feel can vary from deep bone pain to superficial burning and zapping on my skin. Usually I feel several at once. A pain orchestra if you will :)

Part of living with chronic pain is pain management be it medication, breathing techniques, accupuncture (I will be writing a separate blog about my experiences with accupuncture/cuppping). Your life revolves around "staying" on top of the pain and finding the best coping methods to alleviate the intense physical experience (as well as the emotional experience). There are different schools of thought about when to take pain medication. Some say to take medication as soon as your start to experience pain to help stop it from getting too out of control, others say to wait and see how bad the pain gets.

I have done both, I usually will take pain medication shortly after waking up as mornings are very painful and then wait until the afternoon/night to take another dose. Unfortunately I have yet to find a medication that works 100% of the time. Doctors seem to err on the side of caution and because I have been on pain medication for so long, my body habituates very quickly and a lot of medications don't work unless I take higher doses of them. This leaves me sometimes taking the maximum amount I can take in a day and then having to "just deal" with the pain until the next morning when I can begin the "game of pain" again. I often can begin to feel anxious knowing that I will use the maximum amount in my 2 doses and then any pain that happens after that, I will just have to "tolerate". Anxiety and pain often go hand and hand which can complicate things as anxiety will only increase your pain as it changes how your body functions. You breathe more shallowly, you tense your muscles, your heart rate increases...it's like having your "pain orchestra" be tramsitted through a gaint speaker that amplifies the song 100x.

Its hard to explain what living with pain is like to someone who hasn't experienced it. The best way I can describe is a game of tag. I am constantly on the run trying to escape it but I often feel like I am not fast enough. Once Pain "tags" me I am too slow to escape and I am "tagged" over and over again. Things like pain medication, breathing techniques, accupuncture/cupping can give me the speed to run faster and evade pain...but sometimes even that isn't enough. I have come to realize that it is important to have more than one "tool" in your pain toolkit so when one doesn't work, you have something else to rely on.

I wanted to share two new pain relief techniques my new Accupuncturist shared, they don't work for me all the time but they almost always help take some of the anxiety away that comes when I am in a lot of pain.
-The first is a breathing technique. Take a deep breath in through your nose for 4 counts, hold for 7 counts, and then release through your mouth making an "ahhhhh" sound for 8 counts. If you can try to visualize breathing in and out in the spot/s that are hurting. Do this 4-6 times.
-The second is to vocalize your pain. Say out loud how it feels. I usually say "OW", curse words, and how the pain feels "burning, zapping, aching" etc.

A wonderful book about pain is Explain Pain by David Butler. A friend lent it to me and it really helped me to look at pain differently and understand the science behind it. They also have a great blog.

What helps your pain?

starting where i am.

People keep telling me I should write a blog or a book sharing this journey. I have continually scoffed as my story is one of thousands and what nuggets of truth or wisdom could I share that haven't already been shared? I thought of others who have been MUCH sicker than I and thought that my story would have no meaning. But the truth is, I need a place to get this out. Living with a chronic and painful illness has changed my life, rocked me to my very core, and I am trying my hardest to not get swept away in despair and hopelessness. Maybe you are too or maybe you know someone else who struggles...perhaps you will find commiseration or solace in knowing someone else is on this path too. This is my journey...

A synopsis.
Before this phase of my life, I was a healthy and mostly happy gal in my late twenties. I had the guy of my dreams and worked 40+ hours at a job I loved. I loved running and working out, few things gave me greater joy than a long run or a challenging work out.
In Fall of 2011, I began to have chronic nerve pain in my left foot along with lower back pain. I went to numerous specialist: an orthoepdist, another orthopedist, a neurologist, and a trusted PT. After a cortisone injection into my foot with the diagnosis that it was just "an irritated nerve" (the cortisone injection only made it MUCH worse) I got an MRI that found I had bulging discs in my lower back. By then, it was late January and I desperately just wanted some relief. My job as skincare therapist requires lots of bending over and even more time on my feet. At the suggestion of my orthopedist and PT, I decided to get a spinal steroid injection.

This would change my life as I knew it.

March 5th I got the shot, so hopeful that this would be the answer to my foot and back pain. Day by day the I began to get burning sensations on my skin. First it was very localized in my lower back but soon began to "expand". 4 days after, I had burning sensations running up and down my back, into the sides of my stomach, and down into my thighs. Not knowing what was wrong but knowing in my gut that this was "not normal" I went to the ER and was told I must be "allergic" to cortisone. After giving me a dose of of IV painkillers, I was sent home with a some more pain medication. 7 days after the shot the burning sensations kept growing to more and more parts of my body. My left arm began to go "numb" and "feel heavy". The pain management specialist who gave me the injection had never seen anyone have this kind of reaction. I was told to take a few weeks off of work until things calmed down. I never went back.
Day after day, things got worse and worse. Parts of my body that weren't on fire began to go cold and tingle. Headaches that began as soon as I woke up and wouldn't stop. My left arm began to ache in deep bone pain that started at my collarbone and ran down to my elbow. My scalp and foot would tingle and zap and zing. I could barely walk at times, my husband sometimes had to help me shower or dress myself. Talk of MS and spinal taps began. I saw more doctors, got more tests, and spent many nights crying, fearful no one would ever figure out what was wrong.
The joint pain began in mid-April. My knees, elbows, wrists, and fingers would ACHE and burn. By this time based upon research I had done, everything I had pointed to Lyme Disease. I found information that steroid injections can lower your immune system allowing dormant Lyme Disease and co-infections to run rampant through your body. I had already gotten a Lyme test by then which came back negative. Doctor after doctor told me there was no way I had Lyme Disease. Then the cognitive issues began...I couldn't understand simple things, I would tell my fiance things only to be told I had told him the same exact thing not 15 minutes before. To this day, there are conversations I have no recollection of having.
I should mention that all of this began 5 months before I was going to get married. The date loomed in my mind every day. Would I be able to walk down the aisle or even enjoy this special day? I left this detail out at many doctors appointments fearful they would chock up my experiences to being a "stressed out bride".
Finally in May, I found a doctor who had some knowledge of Lyme Disease. He agreed to put me on a month of Doxycycline just to see what would happen. A week later I had my first Herxiheimer reaction. Then I began to feel better, I had days where I didn't have to reach for my pain medication. I went on walks with my fiance and our dogs. I felt like my old self. I hoped with all my heart that I was one of "the lucky ones" and a month of doxycycline would be all I needed to be "cured" Unfortnately that would not be my luck...
During this time, I made an appointment with a Lyme Specialist (called a Lyme Literate Doctor within the Lyme community) As I would come to find out, Chronic Lyme Disease is a misunderstood, baffling illness that many in the medical community simply do NOT understand. Exactly a month before our wedding, I got the diagnoses I had been looking for: Chronic Lyme Disease with a co-infection of Bartonella based upon my neurologial symptoms and a rash that appeared on the backs of my thighs in mid-April. I have since also had the diagnosis of bio-toxin illness, thanks to living in a mold-infested illness for several years.
And so my journey took another path...I began aggressive antibiotic treatment. Some symptoms went away (the headaches, the fatigue, and the cognitive issues) but a lot stayed. The more antibiotics we have added, the worse I have felt as is often common as you treat the diseases more aggresively. Unfortunately because of my mold toxicity, I have a hard time detoxing and my herxing has become constant. At times, it has been absolutely excruciating and I have literally wish I was dead. Some days I can work, other days I have had to cancel clients and lay in bed hoping for the best. I spend a lot of my downtime in bed, knitting with the tv and my dogs keeping me company. Sometimes my joints hurt too bad to knit and I try to occupy myself anyway I can to try and distract myself from the pain.

Living with chronic pain has been one of the most profound things to happen to me. It has changed how I view the world, my body, and the struggles people go through all over the world with illness. I struggle to accept that this is my new "normal" but I hold in my heart that it wont always be this way. Until then I will try to learn and accept whatever this experience is supposed to teach me.

“We think that the point is to pass the test or to overcome the problem, but the truth is that things don't really get solved. They come together and they fall apart.”