The "Improving care for people living with fibromyalgia: Working with complexity" webinar was held on 3rd April 2021.
This informative webinar generated a lot of questions from the attendees. These were collated and are answered here by the presenters, Leila Heelas, Dr Anushka Soni, Dr Sandra Wiltshire and Amanda Wall.
The references from the session are detailed below.
Q: I’d like to know more about how patients are stratified into different treatments, in particular what questionnaires/ assessments are used? Does stratifying determine who is referred to a Pain Management Programme (PMP)?
A: We are not currently using any formal method of stratification to determine who is referred for the PMP. By the time patients see us in rheumatology, they have usually tried initial treatment options with little success and so we refer the majority of our patients for consideration for further input from the PMP team. In the future, my hope is that we might be able to apply the stratification concept early in the patient journey to help match them with treatments which are more likely to work for them, rather than having to rely on trial and error.
In Optimise we use a battery of questionnaires which are broadly consistent with the domains of the IMMPACT consensus recommendations.
This is a poster which is not specifically related to fibromyalgia but mixed pain conditions:
Heelas, L., Toye, F & Barker, K. A Service Evaluation to Assess the Clinical Effectiveness Of Stratifying Patients With Chronic Musculoskeletal Pain in Secondary Care (ORAL012) British Pain Society Annual Scientific Meeting 2016
Q: A lot of the work I do with patients is around helping patients to shift focus from pain relief with exercise (where this has become an unhelpful focus or measure of change) to life and increasing function. What do you think we can do as a profession to bring this focus earlier in patient’s healthcare interactions?
A: There are a number of ways this could be addressed. Firstly, via training and education, this could be via HEIs so that students graduate with this knowledge as well as conferences and training delivered locally. Secondly, we may be able to promote this message on social media to both physiotherapists and people with lived experience. Other methods of dissemination might be via public health campaigns such as the CSP Love Activity campaign or short films which possibly could be funded via dissemination arms of funded research studies. Charities such as Versus Arthritis and ARMA offer helpful messages to clinicians, researchers and people with lived experience.
Q: If we suspect fibromyalgia in a patient do we have to get a GP or rheumatologist to make a formal diagnosis?
A: This is a difficult question as some people worry that making a formal diagnosis creates a label which over medicalises the condition and promotes reliance on health practitioners. From my experience, I think that it would be sensible to have the patient assessed by their GP or a rheumatologist for two main reasons. Firstly, it can be quite difficult to identify other conditions which can present in a similar manner, such as connective tissue disease and inflammatory arthritis. Secondly, I think that, if done in the right way, it can be very helpful for the patient to have the condition formally recognised in order to enable them to start focusing on the strategies to improve their quality of life rather than searching for the cause of their problems.
There is some evidence to suggest that consultant rheumatology nurses can diagnose fibromyalgia effectively.
Q: Do you think an exercise programme for Fibro patients is best managed in a pain service or can it be offered well in the MSK service?
A: I think it is useful to promote physical activity at every part of the patient pathway. I have used the term physical activity as some people living with persistent pain find the word exercise off putting.
A rehabilitation class delivered using psychologically-informed principles in primary care could form part of a stepped care pathway for individuals that would like to increase their activity levels. We know from the rehabilitation research that psychosocial factors are linked to persistent disability. If a class based intervention delivered in an MSK service did not prove to be effective, it might be important to discuss whether specialised rehabilitation could be appropriate.
For a critique of the idea of exercise as medicine, please see:
Exercise is medicine: critical considerations in the qualitative research landscape
Keep fit: Marginal ideas in contemporary therapeutic exercise
Q: What are your thoughts on having fibromyalgia specific PMP to mixed PMP? Is there any benefit to having a specific one? Love to hear anyone’s experience on this.
A: I think people gain a lot from the diversity of our general PMPs. I think there are stronger arguments for specific programs for younger people, those with pelvic pain, and people on the neuromodulation pathway, where their needs are often more unique and exploring commonalities can be very helpful.
Most of the evidence in the NICE guidelines was for condition specific programmes for fibromyalgia however much of the pain management literature includes participants with mixed types of persistent pain. In clinical practice, may people with fibromyalgia have co-existing physical health conditions and other types of musculo-skeletal pain and therefore having a specific fibromyalgia group is perhaps an artificial distinction.
Q: I like working alongside compassion based work as do the psychologists I work with. I do find though it works better with people who are pushing activity and movement and is less helpful in people who avoid significantly. How do you use it with this group of people. I find more ACT approach works better here. Thoughts please.
A: There is certainly a lot of overlap between compassion-based approaches and the ACT model. We certainly do find the compassion group helpful for those people who overdo activity or 'push through' their pain, but we try and maintain a fairly broad definition of “avoidance of discomfort“ which can also manifest as withdrawal and passivity. I do wonder whether people in the latter group are struggling more with some of the barriers to self- compassion (I don’t deserve it/it’s too overwhelming etc) and so going very gently and slowly and helping them experiment with the ideas to develop a secure and stable psychological base, can help them begin to benefit. I was once told that compassion is like Kale – we don’t all like it, but it’s generally good for everyone!
I think that we tend to combine ACT and compassion - based approaches together. Developing awareness of thoughts and feelings in response to movement can be utilised with each approach and I tend to use the approach which has the greatest resonance with the individual I’m working with. Sometimes I don’t use any psychological framework, depending on the needs and preferences of the individual.
Q: I have found people who avoid pain often have a small drive circle and disconnected from core values and what’s meaningful. Is this something you have found?
A: I think this certainly can be the case in chronic pain, often because people are no longer able to use their normal activities and resources to motivate and engage with their lives, or they are no longer able to tolerate the pain and struggle that keeping going brings. This is why we always emphasise starting with very small action steps that are achievable, whilst strengthening the soothing system to cope with the anxiety that this can bring. We use an ACT model with all our approaches and interventions, with a strong emphasis on finding a life of purpose and meaning that people can move slowly towards.
Q: Some evidence has suggested short naps of up to 30 mins before 2 - 3pm could be helpful, this wasn’t in relation to people with fibromyalgia, though it has been helpful for some of the people I have treated. Is this something you would recommend to help with fatigue and improving sleep pattern?
A: I would say that as long as napping in the day does not affect ability to fall asleep at night then its ok for patients with fibromyalgia. The length and time of the nap is important as you say (<30 mins and prior to 2pm owing to the depth of sleep i.e. light versus slow wave sleep). The habit of taking frequent and long naps has been associated with higher morbidity and mortality especially among the elderly, and linked with greater symptom severity in people with fibromyalgia: https://pubmed.ncbi.nlm.nih.gov/25888479/
Here are some interesting articles:
Q: Have other societies different body clock eg siestas? Do we try and access our body clock that is set in early life ?
A: Everyone around the world should have roughly the same endogenous body clock (pathology aside) but external environments and cultural habits (zeitgebers) can influence this. Here is a recent article from an American website, based on research/Pubmed articles:
Q: Can you answer effect of amitryptaline on sleep quality on twitter please?
A: Please refer to these Cochrane reviews:
Dr Anushka Soni
Sarzi-Puttini, P., Giorgi, V., Marotto, D. and Atzeni, F., 2020. Fibromyalgia: an update on clinical characteristics, aetiopathogenesis and treatment. Nature Reviews Rheumatology, pp.1-16.
Macfarlane, G.J., Kronisch, C., Dean, L.E., Atzeni, F., Häuser, W., Fluß, E., Choy, E., Kosek, E., Amris, K., Branco, J. and Dincer, F.İ.T.N.A.T., 2017. EULAR revised recommendations for the management of fibromyalgia. Annals of the rheumatic diseases, 76(2), pp.318-328.
Soni A, Santos-Paulo S, Segerdahl A, Javaid MK, Pinedo-Villanueva R, Tracey I. Hospitalization in fibromyalgia: a cohort-level observational study of in-patient procedures, costs and geographical variation in England. Rheumatology. 2019.
Fitzcharles, M.A., Brachaniec, M., Cooper, L., Dubin, R., Flynn, T., Gerhold, K., Häuser, W., Cowan, K., Laupacis, A., Marleau, R. and Milot, M., 2017. A paradigm change to inform fibromyalgia research priorities by engaging patients and health care professionals. Canadian Journal of Pain, 1(1), pp.137-147.
Bäckryd, E., Persson, E.B., Larsson, A.I., Fischer, M.R. and Gerdle, B., 2018. Chronic pain patients can be classified into four groups: Clustering-based discriminant analysis of psychometric data from 4665 patients referred to a multidisciplinary pain centre (a SQRP study). PLoS One, 13(2), p.e0192623.
Napadow, V., LaCount, L., Park, K., As‐Sanie, S., Clauw, D.J. and Harris, R.E., 2010. Intrinsic brain connectivity in fibromyalgia is associated with chronic pain intensity. Arthritis & Rheumatism, 62(8), pp.2545-2555.
Schmidt-Wilcke, T., Ichesco, E., Hampson, J.P., Kairys, A., Peltier, S., Harte, S., Clauw, D.J. and Harris, R.E., 2014. Resting state connectivity correlates with drug and placebo response in fibromyalgia patients. NeuroImage: Clinical, 6, pp.252-261.
Annals of Internal medicine - In the clinic, Fibromyalgia, March 2020 (https://doi.org/10.7326/AITC202003030)
Central sensitisation in chronic pain conditions: latest discoveries and their potential for
precision medicine, The Lancet Rheumatology, March 2021, Nijs, J et al. (https://doi.org/10.1016/S2665-9913(21)00032-1)
1. Sluka, K. A., Frey-Law, L. & Hoeger Bement, M. Exercise-induced pain and analgesia? Underlying mechanisms and clinical translation. Pain (2018). doi:10.1097/j.pain.0000000000001235
2. Ortega, E., Bote, M. E., Giraldo, E. & García, J. J. Aquatic exercise improves the monocyte pro- and anti-inflammatory cytokine production balance in fibromyalgia patients. Scand. J. Med. Sci. Sport. (2012). doi:10.1111/j.1600-0838.2010.01132.x
3. Ernberg, M. et al. Effects of 15weeks of resistance exercise on pro-inflammatory cytokine levels in the vastus lateralis muscle of patients with fibromyalgia. Arthritis Res. Ther. (2016). doi:10.1186/s13075-016-1041-y
4. Bidonde, J. et al. Mixed exercise training for adults with fibromyalgia. Cochrane Database of Systematic Reviews (2019). doi:10.1002/14651858.CD013340
5. NICE. Chronic pain in over 16s: assessment and management Draft for consultation. (2020).
6. Booth, J. et al. Exercise for chronic musculoskeletal pain: A biopsychosocial approach. Musculoskeletal Care (2017). doi:10.1002/msc.1191
7. Izquierdo-Alventosa, R. et al. Low-intensity physical exercise improves pain catastrophizing and other psychological and physical aspects in women with fibromyalgia: A randomized controlled trial. Int. J. Environ. Res. Public Health (2020). doi:10.3390/ijerph17103634
8. Lichtenstein, A., Tiosano, S. & Amital, H. The complexities of fibromyalgia and its comorbidities. Current Opinion in Rheumatology (2018). doi:10.1097/BOR.0000000000000464
9. CA, N. et al. Adversity in childhood is linked to mental and physical health throughout lifeNo Title. BMJ28, (2020).
10. Beal, S. J. et al. Heightened risk of pain in young adult women with a history of childhood maltreatment: A prospective longitudinal study. Pain (2020). doi:10.1097/j.pain.0000000000001706
11. Bayram, K. & Erol, A. Childhood Traumatic Experiences, Anxiety, and Depression Levels in Fibromyalgia and Rheumatoid Arthritis. Noro Psikiyatr. Ars. (2014). doi:10.5152/npa.2014.6958
12. Gündüz, N. et al. Psychiatric comorbidity and childhood trauma in fibromyalgia syndrome. Turkish J. Phys. Med. Rehabil. (2018). doi:10.5606/tftrd.2018.1470
13. Low, L. A. & Schweinhardt, P. Early life adversity as a risk factor for fibromyalgia in later life. Pain Research and Treatment (2012). doi:10.1155/2012/140832
14. Malin, K. & Littlejohn, G. O. Psychological factors mediate key symptoms of fibromyalgia through their influence on stress. Clin. Rheumatol. (2016). doi:10.1007/s10067-016-3315-9
15. Littlejohn, G. & Guymer, E. Neurogenic inflammation in fibromyalgia. Seminars in Immunopathology (2018). doi:10.1007/s00281-018-0672-2
16. Burke, N. N., Finn, D. P., McGuire, B. E. & Roche, M. Psychological stress in early life as a predisposing factor for the development of chronic pain: Clinical and preclinical evidence and neurobiological mechanisms. Journal of Neuroscience Research (2017). doi:10.1002/jnr.23802
17. Haviland, M. G., Morton, K. R., Oda, K. & Fraser, G. E. Traumatic experiences, major life stressors, and self-reporting a physician-given fibromyalgia diagnosis. Psychiatry Res. (2010). doi:10.1016/j.psychres.2009.08.017
18. Martinez-Lavin, M. Fibromyalgia: When distress becomes (Un)sympathetic pain. Pain Research and Treatment (2012). doi:10.1155/2012/981565
19. McFarlane, A. C. The long-term costs of traumatic stress: Intertwined physical and psychological consequences. World Psychiatry (2010). doi:10.1002/j.2051-5545.2010.tb00254.x
20. Furness, P. J. et al. What causes fibromyalgia? An online survey of patient perspectives. Heal. Psychol. Open (2018). doi:10.1177/2055102918802683
21. PJ, F. et al. A qualitative exploration of experiences of physiotherapy among people with fibromyalgia in the United Kingdom. Pain Rehabil. J. Physiother. Pain Assoc.48, 37–47 (2020).
22. Toye, F., Belton, J., Seers, K. & Barker, K. A healing journey with chronic pain – a meta-ethnography synthesising 195 qualitative studies. Pain Med.In Press, (2020).
23. NEFF, K. Self compassion. (Hachette, 2011).
24. Westover, T. Educated: The international bestselling memoir. (Random House, 2018).
25. Craske, M. G., Treanor, M., Conway, C. C., Zbozinek, T. & Vervliet, B. Maximizing exposure therapy: An inhibitory learning approach. Behav. Res. Ther. (2014). doi:10.1016/j.brat.2014.04.006
26. KD, S., PJ, R. & T, G. Inside This Moment: A Clinician’s Guide to Promoting Radical Change Using Acceptance and Commitment Therapy. (. New Harbinger Publications, 2015).
27. Gilbert, P. Compassion: Conceptualisations, research and use in psychotherapy. (Routledge;, 2005).
28. Jespersen K. Fibrositis of muscles. Ann. Rheum. Dis.9, 66 (1950).
29. EF, T. Fibrositis. J. Am. Geriatr. Soc.16, 531–8 (1968).
30. MD, R. Clinical diagnosis of psychogenic rheumatism. West. J. Med.128, 285 (1978).
31. MB, Y., UP, K.-R., K, K.-R. & AT, M. Pathologic changes in muscle in primary fibromyalgia syndrome. Am. J. Med.29, 38–42 (1986).
32. Wolfe, F. et al. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res. (2010). doi:10.1002/acr.20140
33. Gracely, R. H., Petzke, F., Wolf, J. M. & Clauw, D. J. Functional magnetic resonance imaging evidence of augmented pain processing in fibromyalgia. Arthritis Rheum. (2002). doi:10.1002/art.10225
34. Basu, N. et al. Neurobiologic Features of Fibromyalgia Are Also Present Among Rheumatoid Arthritis Patients. Arthritis Rheumatol. (2018). doi:10.1002/art.40451
35. Evdokimov, D., Dinkel, P., Frank, J., Sommer, C. & Üçeyler, N. Characterization of dermal skin innervation in fibromyalgia syndrome. PLoS One (2020). doi:10.1371/journal.pone.0227674
36. Wåhlén, K., Ghafouri, B., Ghafouri, N. & Gerdle, B. Plasma protein pattern correlates with pain intensity and psychological distress in women with chronic widespread pain. Front. Psychol. (2018). doi:10.3389/fpsyg.2018.02400
37. Doebl, S., Macfarlane, G. J. & Hollick, R. J. ‘no one wants to look after the fibro patient’. Understanding models, and patient perspectives, of care for fibromyalgia: Reviews of current evidence. Pain (2020). doi:10.1097/j.pain.0000000000001870
Dr Sandra Wiltshire
Dr Wiltshire has included a compilation of resources on compassion -based approaches.
Edwards KA, Pielech M, Hickman J, Ashworth J, Sowden G, Vowles KE. The Relation of Self‐Compassion to Functioning among Adults with Chronic Pain. European Journal of Pain. 2019 May 21.
Neff K. Self-compassion: An alternative conceptualization of a healthy attitude toward oneself. Self and identity. 2003 1;2(2):85-101.
Amanda has included Actions to Achieve Better Sleep (Foster 2020) handout.
Alvarenga Dias R, Junior J, Ferreira da Costa E, Nisihara R. (2019) Fibromyalgia, sleep disturbance and menopause: Is there a relationship? A literature review Int J Rheum Dis. 22:1961–1971
Bourguignon C, Labyak S, Taibi D. (2003) Investigating Sleep Disturbances in Adults With Rheumatoid Arthritis. Holist Nurs Pract. 17(5):241–249
Brown T, Brainard G, Cajochen C, Czeisler C, Hanifin J, Lockley S, Lucas R, Münch M, O’Hagan J, Peirson S, Price L, Roenneberg T, Schlangen L, Skene D, Spitschan M, Vetter C, Zee P, Wright K (2020). Recommendations for healthy daytime, evening, and night-time indoor light exposure doi:10.20944/preprints202012.0037.v1
Burns J, Crofford L, Chervin R. (2008) Sleep stage dynamics in fibromyalgia patients and controls. Sleep Medicine. 9:689–696
Choy, E. H. S. (2015) The role of sleep in pain and fibromyalgia. Nature Reviews Rheumatology. 11:513-520
Furukawa Y, Cook IJ, Panagopoulos V, McEvoy RD, Sharp DJ, Simula M. (1994) Relationship between sleep patterns and human colonic motor patterns. Gastroenterology. 107(5):1372–1381
Greene RW, Bjorness TE, Suzuki A. (2017) The adenosine-mediated, neuronal-glial, homeostatic sleep response. Curr. Opin. Neurobiol. 44:236–242
Kalsbeek A, Yi CX, Cailotto C, la Fleur SE, Fliers E, Buijs RM. (2011) Mammalian clock outputmechanisms. Essays Biochem. 49:137–151
Krueger J, Majde J. (2003) Humoral links between sleep and the immune system. Research issues. Ann N Y Acad Sci. 992:9-20
McBeth J, Silman A, Gupta A, Chiu Y, Ray D, Morriss R, Dickens C, King Y, Macfarlane G. (2007) Moderation of psychosocial risk factors through dysfunction of the hypothalamic-pituitary-adrenal stress axis in the onset of chronic widespread musculoskeletal pain: findings of a population-based prospective cohort study. Arthritis Rheum. 56(1):360-71
Murphy PJ, Myers BL, Badia P. (2009) Nonsteroidal anti-inflammatory drugs alter body temperature and suppress melatonin in humans. Physiol Behav. 59:133–139
Lam et al (2016) Efficacy of Bright Light Treatment, Fluoxetine, and the Combination in Patients With Nonseasonal Major Depressive Disorder A Randomized Clinical Trial. JAMA Psychiatry. 73(1):56-63
Nijs J, Mairesse O, Neu D, Leysen L, Danneels L, Cagnie B, Meeus M, Moens M, Ickmans K, Goubert D. (2018) Sleep Disturbances in Chronic Pain: Neurobiology, Assessment, and Treatment in Physical Therapist Practice. Physical Therapy. 98(5):325-335
Nojkov B, Rubenstein J, Chey WD, Hoogerwerf W. (2010) The impact of rotating shift work on the prevalence of irritable bowel syndrome in nurses. Am. J. Gastroenterol. 105(4):842–847
Redwine L, Hauger RL, Gillin JC, Irwin M. (2000) Effects of sleep and sleep deprivation on interleukin-6, growth hormone, cortisol, and melatonin levels in humans. J Clin Endocrinol Metab. 85:3597-3603.
Robertson J, Purple R, Cole P, Zaiwalla Z, Wulff K, Pattinson K. (2016) Sleep disturbance in patients taking opioid medication for chronic back pain. Anaesthesia. 71:1296–1307
Schreibman, C. (2021) Understanding Fibromyalgia 2020. Physician Assist Clin. 6:89–96
Spaeth M, Rizzi M. (2011) Fibromyalgia and Sleep. Best Practice & Research Clinical Rheumatology. 25:227–239
Swansan G, Burgess H, Keshavarzian A. (2011) Sleep disturbances and inflammatory bowel disease: a potential trigger for disease flare? Expert Rev. Clin. Immunol. 7(1):29–36
Tang N, Lereya S, Boulton H, Miller M, Wolke D, Cappuccio F. (2015) Nonpharmacological treatments of insomnia for long-term painful conditions: a systematic review and meta-analysis of patient-reported outcomes in randomized controlled trials. Sleep. 38 (11):1751-64
Turek FW, Joshu C, Kohsaka A et al. (2005) Obesity and metabolic syndrome in circadian clock mutant mice. Science. 308(5724):1043–10
Wu Y, Chang L, Lee H, Fang S, Tsai P. (2017) Sleep disturbances in fibromyalgia: A meta-analysis of case-control studies. Journal of Psychosomatic Research. 96:89-97
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