Chronic: The Pain We Don’t See, Chapter 11

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Chapter 11: When Pain Returns Thursday: July 30, 2020

What a difference a few days makes. In the past week, I have gone from feeling excited about completing big projects in the yard to barley having the energy to hand water a few plants. Usually, when I get slammed by pain after a break from it, it takes a while for the exhaustion to kick in. It usually does not come about until I am worn out from fighting being in pain for a week or two. This week, with a return of major pain in my neck, shoulders, and arms, I have been also floored from exhaustion.

Yesterday morning, I woke in pain and had nothing in me. I went out to the garage to work out and couldn’t get myself started. I decided to switch gears and went about filling in some cracks in my garage and driveway. Laying down on the ground with a putty knife and filler, I filled in three long cracks. My head was throbbing as were my upper arms, but I moved onto another task.

With the help of a skill saw, I cut up some rotted lumber into small enough pieces to fit into the garbage can. All totaled, between both jobs, I worked about 90 minutes. After that, it was trying to figure out how to manage my pain. Medication was a must, but it takes so long to kick in, I had to decide how to deal with my discomfort. Do I lay down flat? Do I occupy my brain with a crossword puzzle? Do I do some laundry and while waiting for it, go onto Facebook? The answer was a little bit of each and without any success.

By the time my wife got home from work around 4pm, I was a wreck. I was nauseous from the pain, could not hold my head up because the neck pain was too much, and I was of no use in the kitchen because every movement I made sent shock waves of nerve pain down my arms and into my hands.

It would be 7:30pm before any pain medication kicked in, a full four hours after taking my last dose. I was worn out from it all and unable to keep awake while my wife and I watched TV.

This morning, I felt a little better. Both my pain and exhaustion were less than yesterday so I headed to the garage and ran on my treadmill at an easy pace for my usual hour. Three-fourths of the way through and my quads felt like they already had a marathon in them. I was struggling, but determined to complete the hour.

When I was finished, I knew as soon as I took a break, I would be done for the day so I took one of the dogs for his morning walk before heading to the hardware store to pick up a few things. Then it was back home and going back over the cracks I filled the day before. Next, it was a little more hand watering and scooping up the dog poop in the yard. I was finished working by 10am, and for that matter, finished in general.

Tomorrow is my next appointment at the pain clinic. What’s next? More epidurals? Another round of nasal Toradol? A stronger dose of a narcotic? All I know is I need something to knock out this discomfort and the exhaustion that comes with it.

While there is a strong sense of desperation on my part to get some relief, I am also aware I am handling it better than before I tried TMS. My thought process is more positive and despite what I am feeling, I am still more hopeful than I was two and a half months ago.

On Tuesday, I met with my therapist and we went over my most recent depression self-evaluation scores. They have been very low, averaging either one or two. She mentioned a minimum score of five is necessary to be considered depressed. When I began seeing her, they were in the teens. Will my improvement last if this pain goes on for seven months like last time or will I slip further into a depressed state again?

A few months ago, I would worry myself silly over this. Now, I am able to calmly and logically remind myself only time will tell what happens. I have options as to how I approach my day-to-day life and one of those is making sure I set aside a few minutes to meditate and remind myself of all the stuff I have control of and what things I can just let go.

I have ridden out storms of pain time and again and I know I can ride this one out as well. There really isn’t any other viable option. I can treat the pain when it flares up. I can continue working on things like dietary changes to help decrease inflammation. However, I also know if my pain decides to act up, all I can do is treat it as best as I know how with whatever options I have at my disposal. For now, it means taking my foot off the activity pedal and using the medication I have to knock it out.

Perhaps, after tomorrow’s visit to the pain clinic, I will have other options. Until I do, it is time to go to the medicine cabinet.

Monday: August 3, 2020

Last Friday, I had an appointment at the pain management clinic that left me wondering what I should do going forward. Here I was happy because I received over three weeks of relief from my epidurals on July 1st only to find out they were not pleased with the results. It seems they wanted to see two to three months of relief.

After some back and forth, it was decided I would undergo another round of epidurals, but I was told if this round does not last as long as they hope for, I can expect to see further epidurals taken off the table. All our talks always come back to me being told to prepare myself for the likelihood of neck surgery.

I am determined not to have neck surgery unless it is my only option left. While I know all the potential good that can result from it, I am all too well aware of the harm that can also come. Some of that is physical like the collapsing of the disks below the surgery site resulting in the need for more surgery. There is also a decrease in mobility which will affect my turning my head. With surgery comes more physical therapy and no guarantee my pain will be any less. It may just end up that I am left with a different type of pain. Worse, if the stenosis that pinches off the nerves where they exit the neck cannot be addressed, I could well be left with the pain I have along with new pain.

However, even if surgery were to go textbook perfect like my low back surgery did three years ago, neck surgery will still result in a huge lifestyle change, one I am not ready to part with. I love being able to be physically active. Exercise is a huge part of my life. Running has been a huge part of my life as has doing gym work and riding my bicycle. Neck surgery will definitely end my running and riding days and will confine me to more limited gym sessions. All too often, the highlight of my day is working out.

Surgery will also result in my being able to do less around the house in terms of projects. Lifting, hauling, digging, and building will be considered high risk activities. Major neck surgery will mean major changes in what I can do and my options will be more limited than they are now. Before I can ever agree to neck surgery to fix each of my seven disks, I have to be certain there is no other option going forward if I am to enjoy any quality of life.

My father did a terrible job of taking care of his health. For him, exercise was playing 18 holes of golf once a week and relying on a cart instead of walking the course. He also ate poorly, drank too much, and self-medicated. He had his first back procedure in his early 50’s and a second before he was 60. All they did was make him more sedentary than before which made combating his weight a bigger challenge.

He would go on to have other surgeries; prostate cancer, and heart surgery were the big ones. By the time he was 72, he was no longer able to play 18 holes of golf even when using a cart. I saw a man who was a successful doctor who managed to retire with all the money he would ever need, give up one love after another when he retired and all because he failed to take care of himself.

My parents loved to travel and saw much of the world over the years. Their plan to retire to Maui where the weather suited my mom’s aches and pains and my dad’s love of island life never turned out the way they envisioned, and much of this was because of my father failing to take care of himself.

Traveling ended much sooner than planned because my dad could not physically hold up to it. Golf was done as was their annual helping volunteer at the three professional golf tournaments held each winter in Maui. About the only time my dad seemed to get out of his recliner was once a week when he headed off to his Rotary club meeting. This often required my mom dropping him off and picking him up because driving was over.

Another challenge he faced shortly after his last heart surgery was Alzheimer’s. I can’t help but wonder how much of this was the result of his poor lifestyle and health. The evidence today points to the increased odds of such a diagnosis if you deprive your brain of oxygenated blood, much of which is easy to get by exercising. His weight would not have been an issue as well as his low back had he taken to exercise. However, my dad was not a fan of it and as a result, he avoided it to the point it affected his quality of life.

My mom was born eight days after my dad. She fought cancer at the age of 42, after giving birth to seven kids. While she struggled with her weight, it was not due to a lack of exercise. From my early years, I remember her working out in the morning to Jack LaLane. She also worked in the yard. In her later years, she walked every morning before sunrise and then met up with friends and swam in the waters of Maui. Despite a terrible bout of pneumonia we thought was going to claim her life in the late 90’s, she recovered and continued with her active life. Her days were also filled checking in on others in need, taking them to appointments, and shopping.

By the time my parents were 75, I used to tell my PE students, my dad was 75 years old while my mom was 75 years young.

I have much more of my mother in me than I have my father. She and I have the same sense of humor and we feel a great need for remaining physically active. If I live to be 88 like her, I hope I am 88 years young. To undergo major neck surgery and have to give up so much of what I rely on as part of my identity is my biggest fear about surgery. Maybe I have failed to develop enough well roundedness in terms of things I love doing and have boxed myself into a corner. Perhaps I will find new things to excite me to help me get over losing some of my exercise options. All I know is right now, I still feel I have miles to run, roads to ride, and challenging workouts to complete that provide me with a sense of joy.

Yesterday, I dusted off my road bike and went for a two hour bike ride for the first time in almost a year. It is conceivable I may have to stop running soon to avoid further neck damage, but by doing so, I might be able to continue to enjoy riding for a few or several more years without needing neck surgery. It is not a tradeoff I want to do, but I also know I may have to in order to avoid a much greater change of life.

For now, I will monitor how I feel after I do a session in the gym, one on my bike, and one involving running. I will make careful note to see not only how I feel while doing each of these types of workouts, but also how I feel after the session ends. Do I notice one triggering more pain than the others? Is there no difference? Or do both trigger my pain more than if I stop them all together?

I remain a constant experiment, not only to the doctors who try to find a definitive answer to provide for me, but to myself, who has never been one to want to wait for the wheels of medicine to slowly churn out a conclusion.

Sunday: August 9, 2020

Trek Mountain Bike
Photo by Tim Forkes

Pain comes in many forms and finding what triggers it is not all that easy. I remember once while I was in physical therapy following my bike accident, I was complaining of pain in my left knee. My therapist tried several different treatments, none of which worked so she called over a colleague of hers. He put me through the same battery of tests I initially went through, each of which lit up the knee, then excused himself. A minute later, he returned with a single felt arch cookie and instructed me to place it under my right arch.

I reminded him my pain was in my left knee to which he said, “I know that. Just do what I say.”

After placing the cookie under my right arch, he put me through the same tests. This time, no pain. I looked at him and he just said to me when there is a problem on one side of your body, it compensates by using the opposite side. This often results in overuse pain.

Locating pain is easy. Nailing down the source of it is the hard part. Only when we do are we able to go about knocking it out for good. This is what has been my biggest challenge.

As I have said before, I have bilateral herniations in each of my seven cervical disks and one more that can pinch down my spinal cord. Any single one of those fifteen herniations can be the source of my neck, shoulder, and arm pain. Add in arthritis and stenosis in two areas and it becomes nearly impossible to locate the primary source of my pain.

Does a surgeon try to repair the specific culprit or culprits knowing if he does he may end up not addressing the correct disks or does he repair all of them knowing his patient will be left with less function, months of rehabilitation, and still no guarantee it will knock out the pain? Does he tell the patient to go about and live his life and hope he holds together or does he tell him to give up his favorite activities with the hope it buys him time even if it means losing the things the patient loves?

When it comes to my physical pain, I have to decide what I can and cannot live with and live without. I know for me to have surgery, I have to reach a point where I am willing to give up my love of being physically active. I can’t run or go on long bike rides if my neck is held together with spacers and other equipment screwed into place. I will have to accept 30 to 40 percent less range of motion which makes simple tasks like looking over my shoulder to see if someone is in my blind spot while I make a lane change while driving. The things we take for granted become lost or forever altered.

Making a decision is made more challenging when there are multiple doctors involved. In my case, one tells me to stop riding my bike because of the position it puts my neck in, but to go ahead and run all I want. Another tells me to stop running because of the potential damage from the impact of my feet striking the ground, and in its place to ride my bike more because it is a non-impact activity. A third doctor says to stop with both activities while a fourth has said he sees nothing wrong with either one.

In the end, I have had to decide what is in my best interest when it comes to my activity level. What I have found has not made making a permanent decision any easier. Running relaxes me and clears my head. I have switched to only running on a treadmill thinking it provides me with consistent foot striking with every stride. I have worked tirelessly on my form and am able to run for long periods of time without experiencing any neck related discomfort during or immediately after my runs. However, the pain that radiates down my arms and weakens them has not let up.

I have been diligent when it comes to following the one thing all my doctors agree on and that is not lifting any heavy weights. I also limit my lifts to much fewer than what I used to do. On days I feel terrible, I don’t lift at all. Still, the pain continues.

This past week, I have reduced how frequently I run and relied more on my road bike. What I have found is after I ride, I have more neck stiffness, but a lot less arm pain. It has been a week in which I have not needed much in the way of pain relief. At the same time, I have seen my shoulder flare up more at night making it impossible to sleep in my bed so I have been relying on my recliner.

In the end, I am finding I am trading one pain for another and am still left with more to figure out. The one thing I have learned is I am not ready to give up the things I enjoy the most. The personal pleasure I receive from completing a fast paced run or conquering a steep climb on my bike help me mentally as much as physically. To give them up forever without having a guarantee of a pain free life is more of a gamble than I am willing to take.

Without the things that provide us with great pleasure, we are left with an entirely new challenge. Can we find new things that provide us with just as much pleasure or do we live with the regret of the decision we made and slowly fade away?

For now, I am more content with the thought of burning out rather than fading away. Maybe in a year or two I will change my mind. However, for now, I still need the benefits I receive from a great workout despite the risks they bring. Maybe this will all change. Maybe one day I will hit a low point and decide I can’t deal with the weeks or months of pain flare ups and the accompanying fatigue and decide to turn to surgical relief.

In the end, there is this part of me that wonders does all of this serve a purpose or is it doing harm? Have I been running from, one that is not physical, but emotional? Is this physical struggle I am confronting serving to distract me of greater emotional pains I have tried to bury all my life? If I confront these emotional pains and can knock them out, will I see my physical pain diminish as well? Perhaps the answer I need is to dig deeper into my past with my therapist to learn more about the mind-body connection.

Thursday: August 14, 2020

Yesterday, I had a minor surgical procedure to release a stubborn trigger finger on my right hand. It is the second procedure I have had for it. A year ago, I had it done and received instant relief. I was surprised there was no pain and other than keeping the incision covered with a band-aid for a few days, no one would know I had surgery.

Back in the spring, on the Saturday before the state first shut down due to COVID 19, I woke up with the finger bent and locked up again. I had to wait more than five months before I could have a second procedure to release it and was finally happy when yesterday came around. Relief from the annoyance of it would be nice.

Unfortunately, this morning, instead of waking up to a fully functional finger that flexes and straightens without discomfort, I have one that is still not able to fully extend. I also have a hand wrapped in a much larger bandage and my wrist hurts and is very stiff.

My surgeon informed me ahead of time I would have a little larger incision and that he would repair it from a different angle. However, I was not prepared for what I am left with. It is too soon to be worried, but I can’t help but wonder if I am just going to be left with a finger that won’t work like my others.

I am also reminded why I am not wanting neck surgery. I can wrap an ice pack on my hand if need be to ease my pain. However, the pain and discomfort that will come from having my neck rebuilt surely will be much worse than what I feel now. The weeks of recovery, relying on pain meds to numb me, and the physical therapy that follows are things I am not looking forward to, especially when I know I will be left unable to enjoy some of my favorite pastimes.

I have lost track of all the orthopedic surgeries I have had. One thing that always motivated me to grind through the rehab portion was knowing I was going to be able to get back to the things I enjoy doing most. It was the same when I went through five years of PT following my bike accident. Despite the constant pain I was in, I saw progress and as I slowly got back more movement, I rejoiced knowing I could do more of the things I loved. Even if neck surgery works to perfection and knocks out my nerve related pain that runs down my arms, I will be left with limitations that will prohibit me from enjoying what I have done for decades.

Would a singer have a surgery to knock out their pain if it meant losing their ability to sing? Would an artist have it if it meant losing their ability to create? Would a surgeon have it if it meant giving up surgery?

When a doctor tells me my neck can be rebuilt and I am a good candidate for surgery, I ask them what it means for my love of running, riding, and physical exercise and I always get the same reply. Such a procedure means giving up those things. I end up feeling like I have to cut a deal with the Devil. What am I willing to part with to be out of this pain? At this time, I am not ready to part with my soul. I will continue to look for ways to buy me more time with the hope new cures or better procedures are developed. I am not ready to give up such a huge chunk of who I am.

Monday: August 17, 2020

The last three nights I have gone to bed only to wake up with a throbbing headache and sore lower neck. It is time I consider a different pillow. The one I have been using is thicker and down filled. My head sinks into it, but I think it leaves it in a forward leaning position which is not good for it. Consequently, I end up rolling on my sides and this just aggravates my shoulders. I keep waking from sharp pains that feel like I am being stabbed whenever I move. I wake frequently, wince with pain, then fall back to sleep.

By one or two in the morning, I can’t take it anymore and move out to the recliner. By then, it is too late. I drift off and on for a couple more hours before giving up on quality sleep. The back of my head down to the base of my neck hurts, my ears ring, and I just want to find a way to sleep comfortably.

My plan today revolves around going for an early bike ride. We are in the midst of a heatwave and I want to do all I can to beat the day’s heat. If today is like the previous few days, it will not only be hot and muggy, it will be one of pain. A nice bike ride will help place me in a positive frame of mind and make dealing with my discomfort easier.

I have been needing to rely on my Norco and muscle relaxant earlier in the day because of my pain. I could use my Toradol nasal spray, but I am trying to hold off so I have access to it following my upcoming epidurals. When they wear off, I will need the Toradol for when my body stops responding to the Norco. It will also allow me to better gauge how effective this next procedure works.

What I am pleased with is my overall frame of mind. Mentally, I am handling this pain and fatigue better and this is because of the TMS. It seems to have worked better than I could have hoped for. In two days, I will meet with the psychiatrist who worked with me during TMS and we will discuss whether it is alright to wean myself off my antidepressant. If I do, and if I continue feeling like I have, it will mean so much knowing there are drug free alternatives to treating depression.

Being able to focus on the positive is an important part of getting better no matter what it is you are trying to heal from. It becomes easier to face things that may take a long time to overcome. It has allowed me to break things down into smaller and more doable segments rather than only seeing a larger picture inside a negative frame. It is not a cure, but considering where I have been, it is a big step in the right direction.