Unveiling the Mindful Solution: Managing Chronic Pain in Loeys-Dietz Syndrome

In the realm of healthcare, where progress seems boundless, addressing chronic pain remains a formidable challenge. While medical advancements have enabled the treatment of various ailments, there are conditions like chronic pain that continue to defy easy solutions. One such enigma is Loeys-Dietz Syndrome (LDS), a rare genetic connective tissue disorder that not only presents unique challenges but also unveils a significant gap in pain management strategies. This article delves into the world of chronic pain, explores the intricacies of LDS, and proposes a mindful solution that could revolutionize pain relief for those affected.

Understanding Chronic Pain and Loeys-Dietz Syndrome:

Chronic Pain: pain lasting beyond three months or the expected healing time for tissue injuries, affects a significant portion of the population.

When it comes to rare genetic disorders like LDS, the incidence of chronic pain takes on a different dimension. Chronic pain in LDS manifests in diverse forms, including:

  • Joint pain,
  • Muscle pain,
  • Abdominal pain,
  • Post-operative pain, and
  • Pain-related fatigue.

The prevalence of chronic pain in LDS not only adds to the complexity of the syndrome but also significantly diminishes the quality of life for those affected. Studies show that over half of individuals with LDS experience severe anxiety and depression due to chronic pain, contributing to the overall burden of the disease.

 

Mindfulness Meditation: A Beacon of Hope for Pain Relief:

A paradigm shift is needed, to assist the  traditional options for managing chronic pain in LDS. Many LDS patients have tried many pain relief strategies, only to still suffer.

Enter mindfulness meditation—an approach that has shown a significant decrease in the usage of pain relief medications across various disorders. Studies have demonstrated its effectiveness in conditions like irritable bowel syndrome, migraines, and fibromyalgia. During the 1970s, mindfulness emerged as a therapeutic approach aimed at addressing diverse psychological symptoms like stress, depression, and anxiety.

Mindfulness: the capacity to consciously observe bodily sensations, emotions, and thoughts in the current moment with a curious and accepting mindset,

Mindfulness holds the potential to transform pain management for individuals with LDS. Unlike cognitive-behavioral therapy (CBT), mindfulness meditation has proven to be more effective even after 52 weeks, bringing about significant changes in brain activation. This change is associated with increased pain acceptance and control and reduced pain-related anxiety symptoms.

What does Research Tell Us About the Effects of Mindfulness Meditation?

  • Mindfulness-Based Stress Reduction Meditation shows significant benefits, including reduced anxiety and distress, increased positive self-statements, and improved pain tolerance after just 3 days of practice.
  • Mindfulness treatments, compared to active control, reduce information avoidance behavior and improve self-reported mental health, non-cognitive skills, and long-term academic performance in students.
  • Mindfulness interventions lead to positive changes in overall health behavior, self-care practices, and sleep patterns among students.
  • Regular use of a Mindfulness app shows significant improvements in mental health, including depressive symptoms and resilience.
  • The effects of Mindfulness-Based Interventions are comparable to pharmacologic and psychological therapies, particularly for complex disorders like fibromyalgia.
  • Online Mindfulness-Based Interventions demonstrate similar efficacy as face-to-face formats and other common interventions for addressing depression and anxiety.
  • Just a short stint of meditation practice has been shown to effectively reduce the sensation of pain. This is achievable with minimal time commitment to learning mindfulness meditation techniques.

The Road Ahead: Mindfulness Meditation Programs for LDS:

Meditation apps offer unique benefits, enhancing accessibility and scalability for mindfulness interventions while potentially reducing participation barriers and costs. In addressing the need for alternatives to traditional pain relief, these apps serve as versatile tools, providing on-the-go access to guided meditation sessions.

The Loeys-Dietz Syndrome Foundation Canada (LDSFC) is spearheading efforts to provide a mindfulness meditation program tailored for individuals with LDS. Keep an eye on our social media and in our newsletter for information about our upcoming LDS & Chronic Pain Mindfulness and Meditation program, supported by, and hosted on, the Breethe app.

Resource:

https://breethe.com

Bathen, T.; Johansen, H.; Strømme, H.; & Velvin, G. (2022). Experienced fatigue in people with rare disorders: a scoping review on characteristics of existing research. Orphanet Journal of Rare Diseases, 17(14), pp. 2—15. DOI: https://doi.org/10.1186/s13023-021- 02169-6

Cassar, L., Fischer, M., & Valero, V. (2022). Keep calm and carry on: Immediate- vs. six-month effects of mindfulness training on academic performance. SSRN Electronic Journal. https://doi.org/10.2139/ssrn.4291733  

Demarzo, M. M., Montero-Marin, J., Cuijpers, P., Zabaleta-del-Olmo, E., Mahtani, K. R., Vellinga, A., Vicens, C., Lopez-del-Hoyo, Y., & Garcia-Campayo, J. (2015). The efficacy of mindfulness-based interventions in primary care: A meta-analytic review. The Annals of Family Medicine13(6), 573–582. https://doi.org/10.1370/afm.1863  

Flett, J. A., Hayne, H., Riordan, B. C., Thompson, L. M., & Conner, T. S. (2018). Mobile mindfulness meditation: A randomised controlled trial of the effect of two popular apps on Mental Health. Mindfulness10(5), 863–876. https://doi.org/10.1007/s12671-018-1050-9  

Government of Canada. Chronic pain in Canada: Laying a foundation for action. (2019). Official Website of the Government of Canada. URL: https://www.canada.ca/en/health- canada/corporate/about-health-canada/public-engagement/external-advisory- bodies/canadian-pain-task-force/report-2019.html  

Hilton, L.; Hempel, S.; Ewing, B. A.; Apaydin, E. A.; Xenakis, L.; Newberry, S.; Colaiaco, B.; Ruelaz Maher, A.; Shanman, R. M.; Sorbero, M. E.; & Maglione, M. A. (2017). Mindfulness meditation for chronic pain: Systematic review and meta-analysis. Annals of Behavioural Medicine, 51, pp. 199—213. DOI: https://doi.org/10.1007/s12160-016- 9844-2

Hoge, E. A., Bui, E., Marques, L., Metcalf, C. A., Morris, L. K., Robinaugh, D. J., Worthington, J. J., Pollack, M. H., & Simon, N. M. (2013). Randomized controlled trial of mindfulness meditation for generalized anxiety disorder. The Journal of Clinical Psychiatry74(08), 786–792. https://doi.org/10.4088/jcp.12m08083  

Johansen, H.; Velvin, G.; Fugl-Meyer, K.; & Lidal, I. B. (2021). Adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome: A cross-sectional study of life satisfaction. Journal of Rehabilitation Medicine, 53(11), pp. 1—8. DOI: https://doi.org/10.2340/jrm.v53.572.

Joszt, L. (2019). Not so rare: 300 million people worldwide affected by rare disease. The American Journal of Managed Care. URL: https://www.ajmc.com/view/dr-elaine- siegfried-on-considerations-for-systemic-therapy-use-in-pediatric-atopic-dermatitis

Loeys, B. L.; & Dietz, H. C. (2008). Loeys-Dietz Syndrome. Gene Reviews. URL: https://pubmed.ncbi.nlm.nih.gov/20301312/

Lynch, C. P.; Patel, M.; Seeley, A. H.; & Seeley, M. A. (2021). Orthopaedic management of Loeys-Dietz syndrome: A systematic review. Journal of the American Academy of Orthopaedic Surgeons Global Research and Reviews, 5(11), pp. 1—11. DOI: http://dx.doi.org/10.5435/JAAOSGlobal-D-21-00087

MacCarrick, G.; Black III, J. H.; Bowdin, S.; El-Hamamsy, I.; Frischmeyer-Guerrerio, P. A.; Guerrerio, A. L.; Sponseller, P. D.; Loeys, B.; & Dietz, H. C. (2014). Loeys-Dietz syndrome: A primer for diagnosis and management. Genetics in Medicine, 16(8), pp. 576 – 587. DOI: https://doi.org/10.1038/gim.2014.11

Mak, W. W., Tong, A. C., Yip, S. Y., Lui, W. W., Chio, F. H., Chan, A. T., & Wong, C. C. (2018). Efficacy and moderation of mobile app–based programs for mindfulness-based training, self-compassion training, and cognitive behavioral psychoeducation on Mental Health: Randomized Controlled noninferiority trial. JMIR Mental Health5(4).https://doi.org/10.2196/mental.8597

Sommers-Spijkerman, M., Austin, J., Bohlmeijer, E., & Pots, W. (2021). New evidence in the booming field of online mindfulness: An updated meta-analysis of randomized controlled trials. JMIR Mental Health8(7). https://doi.org/10.2196/28168 

Tuckwell, A., Ash, E., ZHUO, S., & Sgroi, D. (2020). Mindfulness and wellbeing: The role of cognitive biases. AEA Randomized Controlled Trials. https://doi.org/10.1257/rct.6256-1.0  

Warnick-Kavelaars, J.; de Koning, L. E.; Rombaut, L.; Alsem, M. W.; Menke, L. A.; Oosterlaan, J.; Buizer, A. I.; Engelbert, R. H. H.; & on behalf of the Pediatric Heritable Connective Tissue Disorders Study Group. (2021). Heritable connective tissue disorders in childhood: Increased fatigue, pain, disability and decreased general health. Genes, 12(6), pp. 1—12. DOI: https://doi.org/10.3390/genes12060831

Zeidan, F.; & Vago, D. (2016). Mindfulness meditation-based pain relief: A mechanistic account. Annals of the New York Academy of Sciences, 1373(1), pp. 114–127. DOI: https://doi.org/10.1111/nyas.13153

Zeidan, F.; Baumgartner, J. N.; & Coghill, R. C. (2019). The neural mechanisms of mindfulness-based pain relief: A functional magnetic resonance imaging-based review and primer. Pain Reports, e759, pp. 1—11. DOI: http://dx.doi.org/10.1097/PR9.0000000000000759

Zeidan, F., Gordon, N. S., Merchant, J., & Goolkasian, P. (2010). The effects of brief mindfulness meditation training on experimentally induced pain. The Journal of Pain, 11(3), 199–209. DOI: https://doi.org/10.1016/j.jpain.2009.07.015 

Scroll to Top