“Are you Lyme-literate?” That is what a potential patient asked me on the phone as she called to inquire about a possible consultation. The question caught me off guard for a moment, but I knew what she was getting at. No doubt she had been to multiple medical, rehab and “alternative” providers in her long journey with Chronic Lyme Disease (CLD), some of whom offered useful advice, some of whom offered irrelevant or incorrect information, and some of whom downright disbelieved that her problems were real. What she may as well have asked me was: “Do you believe I’m tired, I hurt, and I can’t think straight much of the time? Do you believe my life has turned upside down? Can you help me?”
Thankfully, I was able to answer without hesitation: “Absolutely.”
Now, am I CLD fluent? Have I dug into the nitty gritty of Lyme disease bearing Borrelia burgdorferi, carried by its deer tick vector and common in the Midwest and New England, vs. Rocky Mountain Spotted Fever bacteria Rickettsia rickettsii, carried by the American dog tick vector and found in multiple areas of the U.S.? Nope. To be honest, I have not dissected all of the ever evolving and often contradictory minutia surrounding Lyme disease and other tick-borne illnesses. I will leave that up to our infectious disease experts as well as people who like bugs (gross). But I am Lyme literate, and I felt highly qualified to help this patient. I understand enough about Lyme disease to know it is a bacterial infection that typically results in an onslaught of symptoms acutely, generally responds favorably to antibiotics when identified early, but results in chronic symptoms in about 10-20% of patients, long after the infectious period has passed. Even though their bloodwork looks normal, people with CLD hurt, they are tired, their sleep is disrupted, and they experience changes in their customary mental functions. And because I have a reasonably strong knowledge base in pain neuroscience, including neuroplasticity, bio-plasticity, adaption, pacing, and graded exposure, I knew I could help this individual and others like her. And happily, I did. She did not miraculously recover overnight, but she made meaningful improvements with persistent work and commitment.
In reflecting on the clinical presentation of CLD, another poorly understood disease comes to mind: Chronic Fatigue Syndrome (CFS), now, better-termed Systemic Exertion Intolerance Disease (SEID). Again, without getting into the weeds, SEID often develops after a triggering event that has overwhelmed one’s protective supersystem. People with SEID are tired (#understatement of the year). Many of them struggle with pain. They report brain-fog, and their lives can become completely hijacked by their disease, yet there is little in the way of a definitive biomarker to “confirm” their illness, leaving them at the receiving end of skepticism from those who do not understand what is going on. CLD and SEID look eerily similar in how they are expressed in the patients I encounter. And their clinical presentations aren’t too different from those I see in people diagnosed with fibromyalgia, and even major depressive disorder…but I digress.
An “ah-ha” moment for me pertaining to conditions such as CLD, CFS/SEID, FM, IBS, PTSD, MDD, MCAS, and other alphabet-soup-and-beyond diagnoses, occurred for me when taking a course called “Everything Hurts” as part of the Therapeutic Pain Specialist certification some years back. Simply stated: there are reciprocal systems within the body that all seek to protect us, and they are as intimately intertwined as you can imagine. The neuro-immune-endocrine system may choose a protect-by-pain expression, or a protect-by-fatigue expression, or a protect by diarrhea expression, or a protect-by-withdrawal expression, or a protect-by-dizziness expression (you get the picture), in order to preserve life and safety. The bottom line for the human organism: do what must be done to survive, i.e., adapt. These adaptions often present as constellations of signs and symptoms across multiple systems, involving various outputs, culminating in labels with ample overlap and diagnostic confusion. In nearly all of these conditions, the nervous system has become sensitized over time, resulting in lower thresholds for experiences of pain and other forms of suffering. And the suffering is real. Therefore, it is critical that we treat the person, not the label. As noted by Louw et al., “The ability to ‘look beyond the label’ and see the person in front of you is imperative when it comes to providing hope.”
For a deep and full dive into the concept of reciprocal systems in light of injury/overload and preservation, I always circle back to the 2008 article by Chapman et al. which is mind-blowingly beautiful…we are fearfully and wonderfully made creatures indeed! This article is well worth a read and re-read, especially considering the immune stressors in today’s environment and their toll on individuals’ allostatic loads. (Seriously, read the article, but be prepared to dig deep. It’s so rich!)
By way of a simpler analogy, consider this. The neuro-endocrine-immune system / protective supersystem reminds me of piece of ancient wisdom: “a cord of three strands is not easily broken.” The visual here is of a rope or braid that is strengthened as a whole due to the sum of its parts. When we think of the strands of the protection super-system braid (the nervous system, immune system and endocrine system) we can see how easily an insult to one results in dysregulation of the others. For example, your patient reports that their severe, 6-month duration of low back pain (with a squeaky-clean MRI report) came on “out of the blue.” Yet when you dig a little deeper you learn that symptom onset was shortly after the unexpected passing of their dear friend. This makes sense, as the death of a loved one is a high stressor, yielding a surge in hormones such as cortisol and adrenaline, which can impact inflammatory processes and/or increase vigilance in the nervous system. Ultimately the nervous system senses danger and produces pain to protect its person. Stressors can and do initiate and perpetuate pain, and this is not “all in our patients’ heads.” Once the nervous system is lit, it’s lit, and pain is now the primary protector. It is often up to us as clinicians to guide patients in ways that can help calm down the protect-by-pain patterns they find themselves in.
So now a new question is brewing…one for us in the rehab community. Imagine your receptionist comes to you with a perplexed look on her face and says she just got a call from a patient who asked a question that stumped her. She looks at you and says, “Do we have anyone here who is COVID-Long-Haul-Literate?” How would you answer her? Are you ready? If we have learned anything from other diseases that follow an infection or other major threat to our survival, we should prepare for a long haul for some of these survivors. They will be tired. They may be short of breath. They may hurt. They may have brain fog. They may be depressed. Their balance may be impaired. They may be deconditioned. The list goes on and on. The neurological sequela associated with COVID alone are staggering, not to mention all of the other systems affected in what is being referred to as long COVID or post-COVID-19 syndrome.
Compared to people coming to us with CLD, CFS/SEID, FM and the like, COVID survivors may have one thing going for them: more health care providers will believe them. Having experienced this collective trauma of a pandemic, we have all witnessed, heard of or read enough to know this illness wreaks havoc on the body’s protective systems, and that everyone’s experience with the infection is as unique as the individual themselves. Each person has their own COVID fingerprint, akin to how everyone’s pain neuro-signature is individualized. I doubt we will question the veracity of their struggles… Perhaps that is a lesson we will carry back to our other patients with conditions like CLD, SEID or FM?
As far as how we approach our long COVID patients, I suspect that here too there will be plenty of overlap. If we know pain, we understand that cord of three strands. We know that while an insult to one often results in havoc on the others, this intimate connection also gives us amazing opportunities in terms of treatment. We can, in a sense, “hack the mainframe,” leveraging a technique that may seem on the surface aimed at one system, but that actually shows benefits in other strands. For example, mindfulness practices (aimed at calming the nervous system) have shown improvements in fasting blood glucose levels among patients with diabetes (an endocrine system win!). Research also shows potential benefits for mindfulness in immune system markers as well. Treatments that have known benefit for pain, such as aerobic exercise, end up improving symptoms of depression. The possibilities are endless, allowing us to tailor our evidence-based treatments to address individual impairments, but also leverage the intuition and wisdom of our patients, leaning into techniques, strategies and modalities that they believe might be helpful for them.
It seems clear that our patients suffering from longstanding COVID symptoms will need many of the things that help us be successful with patients struggling with CLD, SEID or FM.
- An honest, empathetic and hopeful explanation of what is going on with them: “Your body underwent a very significant insult from this infection, and it affected many of the systems that protect and sustain you: especially your neurologic and immune system (may substitute respiratory, etc. per patient’s individual presentation). We are still learning about the effects of the virus, but we know that all of the systems in your body have the potential to take a big hit and recover. There is a beautiful thing called bioplasticity, which means that like plastic, we are moldable, shapable, adaptable. We are going to take advantage of that quality to improve your strength, balance, endurance and energy…”
- An individualized approach involving meaningful goals and graded exposure: “You told me you want to be able to hike with your grand-daughter again, and I do think that is realistic. However, we need to meet your body where it is at today and slowly work our way up. Right now, you are handling 4 minutes of walking with me pretty well. Let’s come up with a plan that nudges your systems to tolerate just a little bit more each week. We need to demonstrate that it is not a threat to walk 5 minutes, then 6 minutes, then 7 minutes. I know it seems slow, but we are much better off slowly increasing than pushing too hard, taxing your systems, and having them rebel. Do you think you can be consistent with this plan? What are some things that might get in the way of you completing your daily walk? Can we set up a contingency plan for those barriers?”
- Permission to struggle, coping strategies, and optimism for the long haul. “You are sure to have good days and bad days. I bet you had them before COVID too! Sometimes, life just happens. For example, you could have a run of poor sleep for a couple of nights, and your protect by pain system ramps up, and your balance gets a little wonky because the nervous system didn’t get to refresh itself the way it typically does when you are sleeping regularly. Or, you get exposed to a stomach bug and your immune system jumps to high alert and you ache everywhere. That may bring up some unsettling memories. It’s good to have a plan for when these moments come, because having good and bad days is just part of being human. I wouldn’t be surprised if all of your systems behave with a little more vigilance for a while in the wake of this illness. How about write up a little cheat sheet here of things to remember during the crummy moments and difficult days and keep this handy? What would you like to remind yourself of when you’re feeling discouraged? This too shall pass? I love it! Great suggestion. How about: This moment is not permanent? Motion is lotion. Now you’re speaking my language! Now, let’s create an action plan for things you will do on those days that are tougher. Let’s go back to what you’ve learned about pacing your activities…” and so on.
Similar to gaining “literacy” with any diagnosis, it is important that we learn the basics when it comes to this evolving long-haul presentation in our patients who are struggling post-COVID. Science has discovered a lot about the virus in the year that it has been with us, and as the “hauls” become longer and longer, we will learn more about post-COVID experiences. It behooves us to take advantage of educational opportunities to help us understand the disease, and as with any diagnosis, we need to remember that expertise comes from executing the fundamentals well. I would argue that by casting a wide net in our professional development to understand the neuro-endocrine-immune system, plasticity, and pain, there is significant application to multiple diagnoses, including long-COVID. And regardless of the diagnosis, we always need to focus on the patient before us, as each is their own N=1 experiment of sorts. We must treat the patient, not the label. No different from anyone else, we will meet each individual where they are at, keep our own placebo cool rather than being rattled or intimidated by their stories, and collaboratively forge ahead, at a pace and intensity that will nudge their protective supersystem back to a place of peace.
- Louw, A.; Schmidt, S; Zimney, K and Puentedura, E.J. Treat the Patient not the Label: A Pain Neuroscience Approach; Journal of Woman’s Health; February 2019; pages 1 -9
- Chapman CR, Tuckett RP, Song CW. Pain and stress in a systems perspective: reciprocal neural, endocrine, and immune interactions. J Pain. 2008 Feb;9(2):122-45. doi: 10.1016/j.jpain.2007.09.006. Epub 2007 Dec 21. PMID: 18088561; PMCID: PMC2278005.
- Ahmad I, Rathore FA. Neurological manifestations and complications of COVID-19: A literature review. J Clin Neurosci. 2020;77:8-12. doi:10.1016/j.jocn.2020.05.017
- Priya Venkatesan. NICE guideline on long COVID. The Lancet Respiratory Medicine. 2021;9(2):129.
- Zarifsanaiey N, Jamalian K, Bazrafcan L, Keshavarzy F, Shahraki HR. The effects of mindfulness training on the level of happiness and blood sugar in diabetes patients. J Diabetes Metab Disord. 2020 Mar 2;19(1):311-317.
- Black DS, Slavich GM. Mindfulness meditation and the immune system: a systematic review of randomized controlled trials. Ann N Y Acad Sci. 2016 Jun;1373(1):13-24. doi: 10.1111/nyas.12998. Epub 2016 Jan 21. PMID: 26799456; PMCID: PMC4940234.
- Article link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4940234/
- Vaegter HB, Jones MD. Exercise-induced hypoalgesia after acute and regular exercise: experimental and clinical manifestations and possible mechanisms in individuals with and without pain. Pain Rep. 2020;5(5):e823. Published 2020 Sep 23. doi:10.1097/PR9.0000000000000823
- Zhao JL, Jiang WT, Wang X, Cai ZD, Liu ZH, Liu GR. Exercise, brain plasticity, and depression. CNS Neurosci Ther. 2020;26(9):885-895. doi:10.1111/cns.13385