Living With Chronic Pain

I look in the mirror and I can’t see it. Others look at me, and they can’t see it either. I hide it well so people don’t judge me. I don’t want them to see me as lazy, an overweight person who doesn’t exercise. Their looks and advice hurt. In the mirror, I appear normal, but inside my body, something is terribly wrong. And nobody knows it but me.

Here is my story.

When my chronic pain reached an intolerable level, I found myself crying every day. Not only did the pain grind me down, but the inability of others to understand or conceive what it was like corroded my emotions until they were right on the surface. One little unintentional scratch, and I dove into depression. My pain has not been excruciating, rather widespread and constant, wearing me down, minute by minute, like some form of military torture. I had no respite, not a single pain-free hour or moment. Family and friends had a hard time understanding ( I know they tried but how could they possibly?), and nobody wants to be a habitual complainer. At least, not me. I received much well-meant, but useless advice that proved to me that nobody really got it. “You just need more exercise.” Or “Take a walk around the block.” “Get on your bike.” And “If doing yoga hurts, you are doing it wrong.” And I know there were those who thought I was simply lazy.

I cried.

And I cried.

But not in a place where anyone would see.

Everything hurt. I couldn’t roll over in bed except inch by inch. Even that hurt. Simple things caused me pain. It was painful to wash my hands, brush my teeth, dry my hair, put on my shirt, look out the window in the car, sit in the chair, sleep on either side, fasten my bra, lift a glass of water, get in and out of the car. To walk to the mailbox, I had to stop at least twice before going on. I hurt when I grocery shopped, swept the floor, held the phone to my ear. No matter what side I slept on, every night, pain burned in the right side of my lower back, radiated down my buttocks through the top of my right thigh, and wake me up. The only way to get rid of it was to lay flat on my back and wait it out. One night I woke with such severe pain in my mid upper arms, I thought I was going to have to go to the ER.

Loved ones and friends get tired of hearing about it all the time, and there is no way they can possibly conceive of what living this way is like. There were a couple of times when I was pushed into doing some movement I knew I couldn’t do. The repeated “Sure you can,” made me feel embarrassed. I made bad decisions based on pride, and the results were always disastrous and piled on the humiliation…and more pain.

The pain started some time ago, an insidious enemy that slowly wormed its way from joints to muscle and bone. At first, I attributed the discomfort to arthritis. And it was. But as the vicious demon spread and intensified, I began to realize this wasn’t normal…not normal old folks’ aches and pains. I couldn’t keep up with others and I tried to hide it, finally avoided a lot of activities I would have enjoyed. Because I’m on a blood thinner, aspirin and other NSAIDs were out of the question. The advance of the pain probably occurred over a 5-year period, As I look back, I think it morphed from typical arthritis to something else in 2012, right after a near death with pneumonia. I often wonder if that episode did something to my body or provided a trigger.

Over the last 6 months, the evolving and escalating pain became truly debilitating and depressing. My primary care physician referred me to pain management. The appointment was over a month away. I couldn’t wait to get in. Happily, I felt this doctor, I’ll call Dr. C, “heard” me. I wasn’t lazy. It wasn’t simple arthritis. There was more going on. One of the papers I had to fill out provided a list of types of pain. I was to select which one best described my pain. I’d never been able to properly define it…not sharp, not throbbing, not stabbing, not dull. Then I saw the perfect description on the list. I couldn’t ‘t believe it. Toothache! If you have ever had an abscessed tooth, you know what I’m talking about… a deep and almost nauseating pain. I was actually ecstatic to see that toothache was a choice. That meant someone knew what I was experiencing. Dr. C immediately sent me across the street to the radiology building where I had x-rays and MRIs. And she put me on a drug called gabapentin. I had to start with one a day, and after four days make take it twice a day, and after another four days take 3 a day. I was also taking supplements like CBD oil, copa iba, ginger…you name it. If the herb or whatever professed to be a pain reliever, I took it. Dr. C had also prescribed hydrocodone which I took but also hoarded in fear I wouldn’t have any when the pain was at its worst. The hydrocodone didn’t take the pain away but made it tolerable. Now, I was almost out of the painkiller and had weeks to go before my next appointment with Dr. C. And I didn’t want to get hooked on the opioid. On the evening of the ninth day of taking gabapentin, I talked to my daughter on the phone. She is a pharmacist, and I bless her for listening to me. I was in real tears, not just teary. The pain had escalated to an unbearable constant body toothache, and I didn’t see how I was going to go on. I asked her if the medicine could make it worse. She kept telling me to be patient. Trust her. But I was ready give up. After we ended the call, I sobbed alone in my office. I wasn’t going to make it another day. Not one more day.

Come the next morning, the 10^th morning of taking gabapentin, I woke up and ROLLED over in bed. My eyes flew open. I had rolled from my back to my side in one movement, not inch by painful inch! I sat up with the same pain-free movement. This time the tears were of joy. I didn’t realize all the little things that had caused me so much misery right away. I suppose I had learned to live with them. But when I brushed my teeth, I looked in the mirror and realized that simple task hadn’t caused pain in my hands, back, shoulder, neck… My body didn’t ache. Those kinds of small miracles happen every day.

I still have some lingering pain, and I fear the beast is returning. My primary doctor put me on prednisone (which made me eat like a pig and isn’t dieting friendly). My C-Reactive Protein levels continue to rise (blood work—indicated inflammation in the body). But there was no significant change from the prednisone, and so I have weaned off of it. One of the x-rays or MRIs showed multiple nodules on my thyroid. Further tests were done (thyroid uptake and thyroid ultrasound) which will be repeated in 6 months to see if any of those little buggers grow. I’m still waiting to do the blood work that will test my thyroid function. Guess I better get on the horse and ride over to the lab.

My journey has been long, tedious, confusing, lonesome, and still not complete. Seems my body has been struck by the perfect storm—arthritis, bone spurs, spinal stenosis, bursitis, blah, blah, blah. And added to that wonderful assortment, the unknown demon. Doctors are playing with the terms polyarthralgia, polymyalgia, and fibromyalgia. Next step is a PET scan. Wonder if that will turn up any new element to add to the witches brew. At least someone has finally heard me…I think…I hope. It’s not just joints and old age. You don’t have joints in the middle of your upper arms or calf or thigh or right side of your torso. This pain is a phantom, a monster that worms through my body and pops up unannounced in numerous places at once, wherever it wants. But I’m winning right now and, wow, that feels good. I’ve been given back 10 to 15 years of my life. I’m going to keep fighting.

I know there are others out there going through the same ordeal. Be in touch. We can do this.