A report and Reflection on my Journey with Chronic Pain

I have lived with chronic pain for almost 4 years, in which crippling fatigue, shortness of breath, and stinging pain all over my body – focused in my chest and arms – flares up regularly. Even now, I feel all of that and nausea. This pain first emerged after emotional trauma in 2018. Thinking candidly of the time, it came in response to a series of traumas, and burnout, and prolonged mental illness.

I’ve been tested for Lymes Disease, Mono, and Malaria. I’ve been screened for auto-immune disorders and generalized nerve or muscle disorders. All of these have not revealed any actionable markers. I’ve seen a rheumatologist, physiatrist, psychiatrist, pain specialist, and naturopathic practitioner. From these I receive the news that I appear to be healthy and normal. “I can’t see anything wrong with you,” my GP said to me recently, again. My chronic pain is “invisible” in the sense that medicine cannot find it and I do not look sick.

My GP diagnosed the pain as fibromyalgia in 2019 by exclusion, saying, “It’s pain we can’t ascribe to anything else so it must be Fibromyalgia.” Fibromyalgia is a bit of a catch-all for invisible muscle pain. So, I operated in the assumption that it was fibromyalgia for a long time. Then when auto-immune irregularities in a blood test warranted a visit to the rheumatologist with the possible prevalence of Mixed Connective Tissue Disorder, I assumed I had an auto-immune condition. After a 6 month wait for the rheumatologist, she told me swiftly that the markers are insubstantial, and I don’t have an autoimmune disorder – adding with equal efficiency that neither do I have Fibromyalgia as I don’t have the tender points that are common to that disorder. She said I simply have a “pain condition” and that was all that she could do for me.

I had read, however – somewhere online that was official-looking – that an update to fibromyalgia diagnosis did not depend on the tender point test, so I felt permitted to keep calling it fibromyalgia. I did so because I had found the term helpful in understanding what I was feeling, and the self-treatment content on Fibromyalgia had been significant in my day-to-day pain-management. Also, I just wanted to have an explanation for people of why I wasn’t strong enough to come to their party, work a shift, and “advance” in life as a healthy-looking young man should be able to do. “I’m in inexplicable pain,” is harder to casually or professionally say than, “My fibromyalgia is flaring up.”

A pain-management class for general chronic pain, from Change Pain Clinic, taught me a great deal of good things and explored the science of pain. They said that some conditions are explained by Central Sensitization which is an irregularly behaving pain system. It sends signals disproportionate to the received sensory information. Fibromyalgia might involve this phenomenon or be entirely explained by it. This focused “pain science” is new and pain science specialists are making bold claims about what illnesses can be fully explained by pain-system irregularities.

This ascription of my pain to Central Sensitization was independently affirmed by both the Rheumatologist and the Physiatrist. This is a much kinder thing for them to do than medical gaslighting (“you’re making it up”), but it is always disappointing to find out that they do not see any structural pathology, and thus cannot prescribe a cure or aid.

Alongside disappointment, I cannot help but feel condescended to when doctors have ascribed my pain to either Fibromyalgia or Central Sensitization. In my GP’s case, the diagnosis of fibromyalgia preceded her assumption that some rest and antidepressants would have me back on my feet in no time. It did not play out that way. In the case of the other doctors, I feel dismissed when they prescribe only self-regulation and sleep. These are good thing that I should focus on, yes, but what I want the doctors to do is recognize that every flare-up feels like a crisis. It sabotages my ability to function. When flare-ups clamp down, I wonder what I will have to lose this time. Shifts at work, social events, whole relationships, sessions with my producer, worship team involvement, capacity for exercise, capacity for educational projects, and capacity for music work – these are all things that I regularly lose in some measure in every major flare-up. In each one, I feel goals both short and long-term slip out of my agency. I lose power and gain isolation.

This present flare-up has been growing for 3 weeks, walking at all has been painful for several days. My chest aches vividly and fatigue guts my confidence. The pain makes falling asleep and staying asleep hard despite my feeling exhausted. My café shifts have been distressing and contribute to pain increase. I gave notice at my café just this week because of how distressing the pain makes work, because of how often I need shifts covered, and because of how frequently shifts seem to aggravate/activate flare-ups. 

I was only working 5-15 hours a week there. I resent that my body was not handling those hours well (I shouldn’t). I am afraid of losing income and afraid of job-searching. I don’t know for sure what kind of jobs I can handle or how much time I can handle.

I suppose I do need to recognize that the café job was quite demanding physically, mentally, and socially. There are likely other things I could do more sustainably. 

In any case, I am losing another thing because of chronic pain, a job I loved. I was hoping to hold on. This is an awkward time to need to reconfigure my occupational direction, as I’m hoping to release my album, “Deeper Still” soon and want stability in other areas of life.

I had already been in chronic pain and fatigue for 2 years when the pandemic hit. I was honestly relieved because the world slowed down closer to the pace of my life with chronic pain. My life didn’t change much when the world locked down. I also felt (selfishly) vindicated because now most people were feeling some of the losses that I had already been feeling 2 years. Now, they were tasting the isolation, the loss of agency, the loss of relationships, the loss of forward motion, and the loss occupational identity that had hurt so much in those first 2 years of my journey with this chronic pain. “Now you get it!” I never said, except in my wounded heart.

Then, aspects of pandemic began to increase my distress, particularly the death of two grandparents in lock-down conditions. It was also the pandemic that frustratingly delayed my access to the rheumatologist and physiatrist.

The affirmation of Central Sensitization as the explanation of my pain by two pain clinics and a rheumatologist seemed confirming. I think it is, and for seasons in these last 4 years I have been assured that that’s all it is. My pain, the diagnosis purports, is from a hyperactive pain system. Activation of the parasympathetic nervous system is key in managing it. In other words, people who suffer pain from Central Sensitization can treat the pain by being kind to themselves.

Self-compassion of all kinds is key. Gentle exercise – or “movement,” if exercise is too strong a word. Just what you can handle. Self-care in nutrition, rest, community, and communication is critical. “Spoon theory” is helpful – which imagines a person’s energy stores as spoons. If you expend yourself beyond your spoon allotment, you trigger a flare-up. Cognitive Behavioral Therapy is helpful, or another device that empowers you to improve the generosity of your self-talk.

I have assimilated some of these methods well. I have practiced some categories of self-care less well. I have definitely become kinder to myself and developed internal permission to rest and prioritize health (at least better than pre-pain me).

I needed firstly to find theological justification for self-care. My body matters. My heart matters. My attachment needs are valid. I can affirm these things theologically in a way that I couldn’t in my youth and early adulthood. I have written many thousands of words on these matters in earlier blogs, reporting as I went along the transformation of my faith experience. It’s been a blazing reconfiguration of my worldview from scarcity assumptions closer to abundance beliefs. It’s been the parallel and always intertwined reconciliation of myself with myself and of myself with others. It’s been finding God to be larger and kinder than I knew. God is big enough to join me in my pain.

A co-suffering, and yet undefeated Christ. Captain in chaos. Spirit over the waters. Involved. Invested. Committed. Merciful to me not out of judicial necessity but out of actual affectionate love. I am valued.

I’m empowered for self-compassion in the recognition of my value. Additionally, I’m empowered to self-compassion in the recognition of my Father’s power to fulfill me. My suffering does not diminish me nor does the loss of my strength for work or mission– which otherwise would have been my means of self-definition. In the economy of God, I miss nothing at all if he meets me in the deep. By Christ, my fulfillment is secure.

These truths have kept me breathing, but my apprehension of them is incomplete. It’s hard. My body returns to clenched anxiety in this flare-up.

As I lose another source of security, my main income source for the last few years, the café, I am trying to believe that I am taken care of, loved, and safe, because God sees me. It’s a struggle. I have not been very able to think creatively and strategically about the immediate future, though I do have tentative plans and am beginning to feel a sense of possibility. 

At this point, returning to an overview of the pain condition, I’m of the opinion that Central Sensitization is the crust of the issue and trauma is the magma. In sessions with my Dad, members of my church, and in counselling, I have explored the possibility of containment of trauma in my body.

An aside: I am incredibly fortunate in this regard. I know so many people who are not so supported by their parents, or communities, and don’t have access to a supportive church as I do. Reflecting now, though I’ve felt scarcity in my body, the ways that I have been supportive speak to a great abundance. My cup overfloweth, or rather it leaks out the holes in the sides, but the inflow is consistent. 

Returning to the relationship between chronic pain and trauma. Central Sensitization, I believe, is a protective mechanism that is having my body work against itself. At the same time, underneath it are trauma-forged divisions of self. One suppressing another. Another accusing another. The other, hiding from the other. Healing involves the release trauma from the body which is also, I believe, a reconciliation of parts of self. It is a re-integration of a divisions into harmony. Integrity, in the fuller sense of the word. 

I’ve found imaginative conversation with parts of myself to be strangely helpful. I’m even conceiving of the pain as an attempted ally to converse with. It may be my body’s response to trauma by which it tried to protect me. Perhaps it protects me from binding my identity to my performance. It’s an emotional immune response that I feel physically.

One thing I’ve learned is that pain is always telling you something. It might be disproportionately loud due to past experience, and thus working against you, or maybe it does need to blare like air raid sirens to acquire attention. Whatever the volume, there’s something at the depth of it that you would do well to recognize and address if possible (It’s not always possible). Pain is a messenger in the body; a built-in, biological angel. Attending to the alarm bells of the body is necessary for healing, and more deeply, for reconciliation with self.

In this attempt to chronicle my chronic pain journey, I’m made aware that I’m still in it. The arc of this story not as neat as I’d like it to be. I’m so very grateful, though, for what I have learned and for the fact that falling ill saved me from a drive for worth-by-performance that was killing me rapidly. That’s another story. God and the Church and family have kept me alive and mobile on a pilgrimage to health. Modern medicine hasn’t been as helpful as I’d like it to be but it’s something. Pain is a messenger. Life is a gift. This has been wild.