Improving care for people living with fibromyalgia: Working with complexity - Webinar Questions Answered

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

https://www.tandfonline.com/doi/full/10.1080/2159676X.2018.1476010

Keep fit: Marginal ideas in contemporary therapeutic exercise

http://orapp.aut.ac.nz/bitstream/handle/10292/12435/Keep%20fit%20v3.pdf?sequence=5&isAllowed=y

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:

https://www.sleepfoundation.org/how-sleep-works/does-napping-impact-sleep-at-night

https://www.sleepfoundation.org/sleep-hygiene/napping

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:

https://www.sleep.org/napping-around-the-world/

Q: Can you answer effect of amitryptaline on sleep quality on twitter please?

A: Please refer to these Cochrane reviews:

https://www.cochrane.org/CD011824/SYMPT_amitriptyline-fibromyalgia-adults

https://www.cochrane.org/CD010753/DEPRESSN_antidepressants-insomnia

References

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.

Additional resources
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)

Leila Heelas

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Dr Sandra Wiltshire

Dr Wiltshire has included a compilation of resources on compassion -based approaches.

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Amanda Wall

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