Learning to cope with chronic pain

This post was last updated on June 10, 2024.

In 2013, I contracted a virus that I thought was the flu. It ended up being dengue fever, sometimes referred to as “breakbone fever.” The nickname is a reference to the level of pain some people experience when they are in dengue’s throes. It feels as of your bones are bowing under some imaginary weight inside your skin, something I don’t wish on anyone.*

I expected my symptoms to subside once the active infection went away. After all, friends who contracted dengue, sometimes multiple years in a row, seemed to return to a sense of normalcy. And yet for me the joint pain remained, below the fever pitch of “breaking bones”, but nowhere near my old self.

For a long time I waited for that “old self” to materialize, and for the pain to recede. It took three years to finally surrender to my present and admit that the pain isn’t going anywhere.

Chronic pain, fatigue and my new normal

“Pain is a message to the mind that something is wrong,” Anna Altman wrote in a devastating piece about managing her own pain and migraines. “To this day I guard a hidden hope that I will receive a new diagnosis, one that clearly explains the severity of my symptoms.”

Like Anna, when I wrote this I did not have a definitive answer about what to call the aggregate of pain that has taken up residence. However, I did have an idea of how it got there.

I got dengue in Vietnam. I have celiac disease, and doctors have surmised that with an existing immune condition I was left with post-viral fatigue. Many people with COVID-19 end up with a similar post-viral issue, now referred to as Long-Covid or PAS-C.

In October 2023, the American Centers for Disease Control (CDC) updated their post-viral illness page to list out viruses that can lead to this level of long term, systemic issues, symptoms that become chronic. These symptoms go far beyond fatigue, and have multi-system involvement, including the vascular system, neurological issues, dysautonomia, different organs, and more. The list now includes:

• Borrelia burgdorferi (bacteria causing Lyme disease)
• Campylobacter
• Chikungunya virus
• Coxiella burnetii (bacteria causing Q fever)
• Dengue virus
• Ebola virus
• Epstein Barr virus
• Enterovirus
• Poliovirus
• SARS-CoV-2 (COVID-19)
• West Nile virus

For me, the post-viral ‘gifts’ included Raynaud’s syndrome, a disorder of the small blood vessels that reduces blood flow. When exposed to cold, my blood vessels go into spasms, which causes pain, numbness, aching and tingling.

Now, when I touch cold food or I am in cold weather, my hands and feet turn white, then blue. I tried making meatballs this summer, but had to stop because touching the ground meat was so painful that I stood in the kitchen in tears. (I’m now the worst Canadian ever.)

In the years following my 2013 infection, I had a brain fog that made me feel like I am wandering through quicksand in the world. Looking around, my day-to-day experiences went from a sharp and ‘awake’ feeling to a slow-motion fishbowl, where I had to claw through the murk to think clearly. It’s was more than simple tiredness of the brain; it was a sharp lessening of executive function. I couldn’t find words sometimes. I struggled to process simple maths that were never difficult problems to process. I became sensitive to noise and light.

The most debilitating thing after the joint pain and vascular issues and brain fog was been the fatigue. A deep, never-ending bone weariness that makes simple things seem like obstacles. And a restless sleep that did not provide respite from the haze of exhaustion.

And finally, I seem to have lost my fingerprints. I found this out when applying for a visa to Portugal in 2015. After placing my hands on the digital fingerprint reader, all of my fingers had giant red Xs on them. “Oh!” said the man reading the scans, “You have no fingerprints!” Uh, what? Apparently fingerprint atrophy is not unheard of chronic fatigue patients, be it faded prints or an inability to read prints at all. Fingerprint atrophy can also occur with Raynaud’s syndrome.

I seem to have hit the fingerprintless jackpot. Jokes about my going out and robbing banks abounded during my years of travel, don’t worry.

The combination of chronic pain, brain fog, vascular issues, and a deep fatigue combined to compress my resilience and made it difficult to see the forest through the trees. Emotionally, it felt like small disagreements loomed large. I found myself more reactive than before, taking things more personally.

Instead of facing my days with resolve, I started curling into myself, warding off intrusions that might make things hurt more. I started fearing the next shoe that could drop, and wondering if I would be able to cope.

This was all prior to the spinal CSF (cerebrospinal fluid) leak that I sustained in 2017, a condition that compounded all of these symptoms and added many more. I went from struggling to cope to fully debilitated and bedbound. I wrote this article in 2016, prior to my leak, but its principles are ones I came back to again and again.

If only ‘being positive’ fixed things

Anxiety can be magnificently destructive, but when combined with chronic pain, it becomes paralyzing. Worrying about whether you can withstand more pain is a valid concern. But, as I eventually figured out, it only serves to make things worse.

In his book Full Catastrophe Living, Jon Kabat-Zinn notes:

“If you have a chronic illness or a disability that prevents you from doing what you used to be able to do, whole areas of control may go up in smoke. And if your condition causes you physical pain that has not responded well to medical treatment, the distress you might be feeling can be compounded by emotional turmoil caused by knowing that your condition seems to be beyond even your doctor’s control.”

My distress was compounded by the fact that I looked healthy, even though I was in pain all of the time.

“You seem great!” friends would say, glimpsing a photo on Facebook. Some would tell me to take supplements, or to just ‘think positive’ about the pain and live my life as I used to. They meant well, of course. But the comments reveal a dismissiveness about longer-term pain that other friends with ‘invisible illnesses’ struggle with also. It’s as if people expected us to will it away.

If only we had thought about being more positive, we’d be ok! How silly of us.

In the years since, a welcome public discourse about toxic positivity has emerged, and I’ve found — mercifully — a reduction in these kinds of comments. I don’t know any chronically ill patient who hasn’t tried to reframe, tried to focus on the positive, to will themselves to a better place. It’s entirely unhelpful to foist that advice on on someone. I guarantee they’ve already tried.

Spoon theory and saudade

In contrast, there is the The Spoon Theory, a helpful and instructive parable to support patients who are chronically ill by explaining the effects of invisible pain. The crux of the theory is that everyone has spoons, but those with chronic illness have a limited amount of spoons that we are able to use in a day. Furthermore, we use them on things most people don’t need to waste spoons on, simple things like taking a shower or making a meal. The result is that everything you do, every decision you make about undertaking activities, all come with a calculus of how many spoons it ‘cost’.

People who are well usually have a big vat of spoons, meaning that they can take on a lot in a day before they are spoonless and depleted. For those who are chronically ill, the spoon situation is more scarce. And once you use up all your spoons for that day, that’s it. You can’t do anything but rest, since you are so drained.

For most people in life, pain is temporary. When it becomes a full-time roommate, the things that used to help—going to the gym to work through it, climbing a mountain and communing with nature, going to a concert—become things you dread due to pain instead of pleasurable experiences. Often, you lack the spoons to do them at all.

Some days you have 5 spoons. Other days 10. But the fact that you are counting is part of your illness. For many, that kind of sustained bracing is beyond contemplation.

The Portuguese have a word I love, saudade. NPR defines it as follows:

A melancholy nostalgia for something that perhaps has not even happened. It often carries an assurance that this thing you feel nostalgic for will never happen again.

This word, untranslatable in English, is what I have struggled against these many years.

A wistful longing for something that may never return. After so long, seeking an answer to ‘fix’ the pain was not helping. Ultimately, I only found a better mental place once I banished that deep, destructive nostalgia out of my mind.

Healing vs curing

In her long, thoughtful piece about her daughter Carmen’s MS journey, Maria Bustillos interviewed a doctor named George Jelinek. Dr. Jelinek referred to the difference between “healing” and “curing,” with the central message that it really matters to take a more active role in the care of our own bodies.

Ultimately, if you fall through the cracks of the medical system, or if you fail to receive a diagnosis that has clear, actionable treatment, you have to take some control back for your own sense of self and health.

Maria’s reaction to his philosophy was one of comfort:

“Being encouraged to take care of herself made a world of difference to Carmen, and to us. We weren’t waiting around for the next bad thing to happen; we were working together in a diligent and increasingly hopeful state of mind.”

In the absence of finding a solution to stop feeling pain, I found hope in being able to reframe my attitude toward the pain. This included actively cultivating a sense of self-compassion, acceptance, and gratitude. These are all words that pre-travel Jodi would have taken a look at and rolled her eyes forever.

Simply accepting what is unmanageable and not trying to control what you cannot change is a marked shift from my old way of thinking. It is also directly in conflict with the way I was raised in Western society. “Give up and just accept that things suck? Are you kidding?” But it is the only way that I have been able to turn things around. By focusing on my progress (or lack thereof), I was making a difficult situation more untenable. Now, I celebrate the small steps I have started to take instead of fighting for bigger goals.

I learned, too, as the years went on that accepting does not mean giving up. It doesn’t mean resignation. It means making peace with your ‘now’, and allowing yourself the freedom to turn toward that hope that Maria describes.

Rachel, a reader who contracted dengue and malaria at the same time, has struggled with issues of chronic pain and fatigue. Her journey mirrored mine, except that she was able to see a pain specialist in her home country. She and I have gone back and forth about our experiences, and our respective attempts to find joy in a life that is now different for each of us. For her, too, it has meant accepting the pain and not struggling against it. She has also actively sought out what brings her joy. “I had to try and look for joy and gratitude even when I didn’t feel it,” she wrote. “This became reflexive, and somewhat automatic.”

Like me, Rachel wasn’t brought up to seek out gratitude moment to moment. But she too found that focusing on it, even if things hurt, helped shape the outline of her healing.

When I talked about travel as a small woman, or as someone with celiac disease, I always said that I can only live in the body I have been given. And yet, for years I did not want to accept that very same fact when dealing with pain.

On my travels, eventually acceptance meant getting a home base and shifting my business to be less depending on nonstop travel after 7 years of nomadic living. After my spinal CSF leak, it meant an even tougher equation: accepting what is unchangeable suddenly included not being able to tie my own shoes, or live independently.

In both cases, it required looking for joy in smaller things, in the absence of the bigger ones I can no longer do.

How I learned to cope with chronic pain

The most important, most difficult, most fundamentally frustrating thing is this: you simply need to accept that this is your reality, and move forward from there.

Even when moving forward feels like crawling on the floor, a millimeter at a time.

Even when progress feels elusive, and you can’t bend your hands in the morning.

The only thing you can do is care for yourself and try to find solutions that work for the body you’ve been given.

I do want to add that I have experimented with a lot of different diet-based changes, supplements, and therapies. I have been tested for many conditions and inflammation and more in the blood, thyroid, parathyroid, you name it. While I appreciate those telling me that I should try x and y thing that will magically fix it, with all due respect, I have tried many of those things.

Even turmeric.

1. Daily meditation

I meditate both morning and night, and while there are times where I feel resistant to the practice, I cannot deny that it makes a big difference. A 10-day (spider-filled) Vipassana meditation course in 2015 helped accepting what my body is feeling moment to moment, and also reduced reactivity in other areas of my life.

2. Helpful books about pain and chronic illness

I read some very helpful books for stress, the brain, and pain management. The following are a few of the dozens and dozens that I have read in the realm of pain management, stress, self-help, and more. They are books that I will return to, because they tackle the precise tool that has helped turn things around: my attitude toward the pain. I highly recommend them all.

• Full Catastrophe Living, by Jon Kabat-Zinn. As the creator of mindfulness-based stress reduction programmes, Zinn focuses on mind-body strategies derived from meditation and yoga to counteract stress, establish greater balance of body and mind, and help you get out of the rut of fearing pain.
• Self-Compassion, by Kristin Neff. Self-esteem work isn’t the fix to perfectionism, argues Neff. Accepting the present, being kind and compassionate to ourselves and still striving to do better is. The book offers exercises and questions in each chapter to help.
• When Things Fall Apart, by Pema Chodron. I picked this book up a few years ago, but wasn’t really ready to read it. Or rather, I was not yet willing to accept the pain and change my perspective about it. I was still looking for a fix. Chodron writes that when we are continually overcome by fear, anxiety, and pain, the way out is to stop bracing against it and learning to stay open. Not easy, and you have to be willing to read her words without judgement, but I’ve found them very helpful.
• The Brain’s Way of Healing, by Norman Doidge. This is more about neuroplasticity than coping with pain, but the entire first chapter delves into just how incredibly adaptable the brain is, and how we can harness its plasticity to help downregulate our pain loops, be they neurogenic or nociceptive. One of the more important books I’ve read for my own journey.

2024 Edit — Additional, very helpful books that have accompanied me on this long journey are as follows:

• The Lady’s Handbook for Her Mysterious Illness: A Memoir, by Sarah Ramey
• The Invisible Kingdom: Reimagining Chronic Illness, by Meghan O’Rourke
• What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt, by Tessa Miller
• How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, by Toni Bernard
• The Sound of a Wild Snail Eating, by Elizabeth Tova Bailey
• Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand, by Julie Rehmeyer

3. Cultivating patience

I started to understand that resilience is a process, but that targeting resilience was also counter-intuitive to my healing. Like many overachievers, I trafficked in perfectionism for most of my life. I’ve had to let that go.

Warding off imperfection doesn’t make us stronger, even if it feels like it might protect us. As with opening your heart to others, cultivating openness makes you resilient by process, but striving FOR that resilience ekes into toxic positivity.

For chronic pain, baby steps feel like giant leaps. Progress doesn’t happen overnight. And that’s ok.

4. Accepting what is

One of my best friends often mentions “magical thinking,” that wishful place when you “what if” something to oblivion. Magical thinking isn’t reality, it’s simply a story you are telling yourself.

Instead of my fantasy that I’d wake up healthy one day, I’ve worked on accepting what is. I’m a person with significant pain problems, and I’m availing myself of tools to cope better. It is what it is. All you can do is work with the reality you are living, and for me that meant accepting that these limits are valid and I need to respect them.

5. Practising gratitude

A friend argued that my websites are a practice of gratitude, since they share the many wonderful things I’ve encountered and appreciated during my travels and beyond. While that’s true, it also hasn’t been enough to help me in this journey with pain.

What has helped is very simple: writing down 3 things at the end of each day that I am grateful for, within my reality. There is some science science behind this practice, despite my initial skepticism. Nowadays I’m all for reminding myself of the good in my life, which is plentiful despite the pain. This doesn’t detract from the veritable awfulness of what I’ve been experiencing, and it doesn’t mean avoiding any negative thinking. What it does do, is help my mind dwell on the ‘good’ instead of the bad.

6. Moving as much as I can*

Walking when the pain is slightly better, doing restorative yoga classes (highly recommended and far more gentle than a different type of yoga class), stretching and taking stairs when they are around. Every little bit of movements counts. I’m used to it hurting when I move but I still try to move when I can.

7. Trying to find joy in this new space

As I mentioned above, the things that brought me joy were the ones that now hurt. I had to get creative with the things that were available. I started to make lists, with a hat tip to the app IFTTT – if this, then that.

I made two-column sheets: if this isn’t available then I’ll do that instead. If I can’t climb a mountain, I can go for a long walk in the park. If I can’t eat chilies, I can cook a fun meal at home.

And so on.

With a leak, the IFTTT version is even more tiny: calls with friends, reading something I enjoy, a treat that my body can tolerate, working on something that may help a patient feel less alone.

8. Creating morning routines

I am talking very simple routines, not the “how I hacked my mornings and became The Most Productive Entrepreneur Ever” kind of routine that often gets lauded on social media.

Even if my day ends up being very painful, having a short morning routine helps me feel like I did something. For me, that includes my AM coffee, writing down some overnight thoughts, and doing whatever work I can handle in my leaky ‘uptime’.

Prior to my leak, it involved yoga at home and a short AM meditation.

9. Making diet and supplement changes

Some of what has worked for me:

• This may be common sense to the rest of humanity, but I’ve spent most of my life in a state of normalized dehydration. It’s amazing how much better I feel when I drink water. It’s as though everyone else telling me I was crazy for not drinking more of it was right.
• Cutting out caffeine except for that one (glorious) cup of coffee per day.
• Cutting out alcohol, with rare exceptions.
• Cutting down on sugar as much as possible. It’s in a lot of foods, but I have eliminated most desserts and snacks that have sugar other than as a treat.
• Taking a probiotic daily (I take a product called Mood Probiotic that is d-lactate free because it’s shelf-stable and includes the strains I want to supplement with.)
• Making sure I’m getting enough magnesium and trace minerals and electrolytes in my day. I don’t get enough in my food, so I do supplement these but at much lower doses than a lot of supplements include. I do tolerate Thorne’s Trace Minerals, and take it a few times a week.
• I am already celiac, so I don’t eat gluten but I have found when I do nowadays by mistake it’s far worse than it was pre-dengue. I’m extra careful about cross-contamination. When my joints are particularly bad, I also cut out corn and nightshades.
• 2024 edit: I have subsequently learned that a significant percentage of my pain was due to an immune condition called mast cell activation disorder. This condition cropped up after my 2013 dengue infection, but it took years to get diagnosed. It’s also an immune dysfunction increasingly occurring after a covid infection. Changing my diet and taking appropriate antihistamine and mast cell stabilizing medication has lowered my pain levels considerably. Treating this condition also helped me sleep consistently, and got rid of the insomnia I experienced for years since my 2013 infection. Please see below for more about this condition.

10. Connecting with others

Chronic pain has a tendency to make you feel alone and misunderstood. While it’s true that some people may not grasp the extent of it, no doubt if they are true friends they will love you all the same. Connecting to friends who accept me despite the current limitations has been really important in helping me out of my foggy isolation.

I also appreciate friends and the three readers named Rachel who have been willing to share their experiences with chronic pain and immune disorders. As humans, we are wired for connecting to others and it’s times like these that we need to remind ourselves to do so.

Tim Urban wrote a short post about the 100 10-minute blocks we get each day. It’s up to us to decide how to use them. It has taken a lot of reframing for me to recalibrate into this new normal, and I am not fully there yet. There are many days, bad days when it hurts to move, when I think what if this never ends. But then I actively try to focus on what I can do: fill those ‘blocks’ with laughter and soup and learning. Go outside and take the time to smell a flower or stare up at a beautiful building. Write whatever comes to mind, without judging.

The pain is here, and it may be here to stay. All I can do is carve out my own joy within it, and accept that it is now a part of who I am.
-Jodi

2024 updates: a spinal CSF leak and Mast Cell Activation Syndrome

As I mentioned above, years after I wrote this post I sustained a spinal CSF leak, caused by a diagnostic lumbar puncture in 2017. It is ongoing. I’ve had four procedures to try and repair it, but thus far none has lasted longer than 8 months. I also went into anaphylaxis during my last blood patch, and needed epinephrine on the table as IV steroids did not stop the reaction.

That anaphylaxis, and many instances of it thereafter, as well as the new reactions to foods and environmental triggers and medication that I never had prior, are due to mast cell activation syndrome. This is an inflammatory immune condition that has required many further changes to diet and lifestyle.

Per the specialist I saw, this condition can happen post-virally in patients unaware that they were genetically predisposed to developing it. I got it after dengue fever, but it crops up these days in the news with long Covid patients. I thought my years of insomnia were due to anxiety or stress, but nope: they had a physiological basis. Mast cells are more active at night, and I sleep better now than I have in years thanks to stabilizing them.

There are many contradictory resources about mast cells online, especially the ‘low histamine diet lists’. I decided to put my notes all in one place, and put together a long resource page about the condition here. It includes a section on long Covid, and I update the page frequently.

I also learned that I have Ehlers-Danlos Syndrome, which explains a wide variety of disparate symptoms during the course of my life, ones I would have never connected together. You can read more about EDS here.

For more about my leak journey, see a piece I wrote for CNN here. I am working on a resource page for leaks, spinal and cranial, as well, but in the interim, please see this post about how I made my apartment accessible for my disabilities while living with a spinal CSF leak.