Shazia’s story before rethinking pain:

Shazia is a middle aged single mother of South Asian heritage living in central Bradford. Two years ago she received a diagnosis of fibromyalgia and was referred by her GP to a Musculoskeletal Service. After working clinically with Shazia to the extent they could, her MSK GP specialist referred her to Rethinking Pain for community-focused, persistent pain support.

In her initial appointment, Shazia explained to her Rethinking Pain coach that shewas barely clinging onto her job working as a banking consultant because of the painand days off work, due to illness. She was emotional and expressed that her sense ofself-worth was at rock bottom due to stress and not being able to function to hernormal ability. Additionally, she told her coach that when she was at home, she wasunable to tend to her children the way she felt she should and felt guilty.

Shazia was convinced she was failing and could not meet her responsibilities.

“I WOULD JUST LAY IN BED OR SIT INANOTHER ROOM AWAY FROM THE KIDS, AS IWAS IN SO MUCH PAIN. I DIDN’T WANT MY KIDS TO SEE ME LIKE THIS”

“I FEEL LIKE A FAILURE… HOW DO I CARE ANDPROVIDE FOR MY CHILDREN?”

Shazia’s Personalised Plan:

Anastasia and her coach started work together by using pain self-management tools to enable herto set realistic and achievable goals for herself.

Anastasia attended Rethinking Pain’s ‘Understanding Pain’ workshop after which her health coachdirected her to ‘Ten Footsteps to Living Well with Pain’ which is a free, step-by-step online guide toliving well despite persistent pain. She is also attending additional Rethinking Pain workshops onspecific topics, like diet and sleep

“IT WAS GREAT, AND NOW I KNOW NOW I’M NOT ALONE IN THIS”

How Anastasia‘s life changed:

After multiple contacts with Rethinking Pain, Shazia’s pain was reassessed by theirmultidisciplinary team. Between them, it was agreed she could benefit from cognitivebehavioural therapy (CBT) because many of her negative thoughts affected her behaviours andemotions.

The community-based pain management support Shazia has received to date from RethinkingPain has meant that she finally felt able to speak to her employer and inform them of herdiagnosed condition and difficulties faced. Consequently, her working hours were reduced,which gave her the opportunity to take stock and organise herself. As a result, the time shenow spends with her children has been of a better quality and has lessened her sense of failureand guilt.

“Before I was worried to tell my employer I had pain but once I had the confidence to,they’ve been so good and helpful. Coaching helped me do that.”

Shazia is continuing with her CBT sessions for longer term support. On completion, Shazia andher Rethinking Pain CBT therapist and health coach will decide whether she is ready to bedischarged from Rethinking Pain or if she wishes to stay in the service a little longer, to accessadditional support on further topics in the Pain Toolkit including diet and emotional wellbeing,creative therapies and keeping active.

“I FEEL LIKE A COMPLETELY DIFFERENT PERSON! I’M MORE ENERGETIC AND MUCH HAPPIER. I AM SLEEPING BETTER AND I’M MANAGING MY PAIN BETTER THAN BEFORE.””

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Getting people active via faith settings

Bushra is 54 years old and lives in the West ofBradford with her family. She is a proud mum to two grown up children. Bushra was a teaching assistant until recently when she needed to give up her cherished job to care for her mother, who after a fall was unable to manage daily tasks and now suffers badly with shoulder pain. Becoming a full-time carer presented a challenge for Bushra because she also has several health conditions and persistent pain due to past injuries, a trapped nerve in her foot and osteoporosis. Bushra feels that she can’t let pain or challenges she faces deter her from having a productive future and good quality of life.

“When you’re facing obstacles and you’re just sitting at home doing nothing, the pain is with you; you feel you can’t do anything, but when you get out of the house and do things, you’re distracted, no pain.”

Bushra has a nurturing, chatty personality and her faith is an important part of her day and her pain management. Part of her deciding not to sit with her pain led to her becoming the intezamia for a nearby mosque. This role involves her being a supporter of women who attend the mosque, looking after things like buying food and cleaning, organising activities and getting the ladies involved with those.

Bushra told us, “Someone told me about the Happy Healthy You (HHY) tutor and she suggested running a class to get ladies moving more. I thought “great idea, we’d love to that!” and now we have around 20 ladies attending each week. The tutor gets us to come out of our comfort zones and the exercises have helped us with being more flexible, less breathless and feeling stronger and more able to do things”.

Unexpected benefits of getting involved

Bushra told us about a knock-on effect from what she’d been learning in the exercise classes, “I learned some stretches, that I now get my mum doing at home. They’ve helped with her locked shoulder and getting back more use of her arm, and that means that she can do a bit more for herself”

Bushra explained that getting together with others in the mosque to move more had brought extra benefits than just fitness. She told us “We realised many of us have pain and health issues and we decided to build on the exercise class. HHY and Rethinking Pain helped us start ‘Knit & Natter’, a peer group where we talk, laugh, share our thoughts, ideas and everything! When we do this, we don’t think about the pain, we feel free, no pain!”

What the exercise classes led to

Getting to know the HHY tutor, and building a relationship and trust with the ladies’ group enabled delivery of Understanding Pain in a faith setting, and for Rethinking Pain’s academic research partners, Leeds Beckett University, to run a focus group to better understand the ladies belief about pain, and about how their faith interplays with their experience of pain. Bushra explained “Through getting to know HHY we agreed for Rethinking Pain to come and run their ‘Understanding Pain’ workshop. They came twice and gave the ladies information so they could ask their doctor to refer them to their community pain support. Another time,
the university lady, Ghazala, came along and she listened to what we thought about our pain and about how our faith can help us deal with pain. It was good for the ladies to be listened to about that”

Thanks, and good news

We have valued the chance to speak to Bushra about her life and about how getting more active has helped her. We are also appreciative of her advocacy of the Rethinking Pain service and the Happy Healthy You offer of in-person and online exercise groups. We end with good news that JTI Victor Street Mosque recently won the ‘Active Faith Settings’
Bradford Sports Award for their work getting people moving more in faith settings, which Bushra has been very much involved with. Congratulations to everyone involved.

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Allana is 31 years old and lives in Bradford with her partner, Joe, andtheir three children. She has lived with persistent pain since the age of15. Allana experiences intense pain in her stomach and widespreadpain across the body, which causes a reflex that makes her vomit.Allana’s pain started after a traumatic event in her teens and worsenedafter having a distressing birth with her first child.Allana also suffers with fatigue and is not able to work; her partner Joeis her carer and does most of the physical labour involved in parenting,which Allana finds very difficult.

“I know everyone’s opinion of being a mum is different, but I had an image of the kind of mum I wanted to be and I’m not that, andthat’s still very upsetting.”

Allana has had many negative experiences when trying to get help forher pain and feels that on many occasions health professionals andfamily members dismissed her symptoms.

“Sometimes, it makes you want to give up. It can be scary whenyou realise no one believes you have this pain.”

Allana was diagnosed with fibromyalgia in 2021 after many years of investigations and tests. She feels that she was lucky to find a doctor who finally believed her story about her symptoms. It was important to Allana that she found someone who took the time to sit and listen to her and did not dismiss her experiences because of her young age. She told us that even after her diagnosis, she still has to advocate for herself.

“I’m 31, I’ve got my diagnosis, but I’ve still got to prove myself. I had my personal independence payment (PIP) review a week ago and even during that you feel like you’ve still got to prove to a stranger that you’re ill.”

Allana’s pain has become worse over the years. Whilst her living with persistent pain is the norm for her children, she worries that her partner struggles with how she has changed from when they first met.

“We realised many of us have pain and health issues and we decided to build on the exercise class. HHY and Rethinking Pain helped us start ‘Knit & Natter’, a peer group where we talk, laugh, share our thoughts, ideas and everything! When we do this, we don’t think about the pain, we feel free, no pain!”

Rethinking Pain

Allana was referred to the Rethinking Pain community pain service by her GP in June 2023 and was assigned a Health Coach. She took up the invitation to join the Young People’s Focus Group, aimed at finding out what kind of support people under the age of 35 would welcome to support their pain care more holistically and suffer from its effects less. By talking to other young people, Allana feels many of them don’t have the confidence to be able to speak up about their pain and symptoms, which she says leads to misdiagnoses and young people becoming isolated and not accessing help.

“Young people, they don’t dare ask for a second opinion. They will just think, if the doctor said I’m fine, I must be, I’ll leave it then, and so they suffer in silence because they don’t know how to stand up for themselves, dispute a professional’s verdict or approach the situation differently. It can be difficult not having that power in your voice”

Allana says that the stigma around young people living with persistent pain had a huge impact on her when she was first experiencing pain as a teenager.

“I was told I was just trying to get out of school; I was making it up for attention. I was only taken more seriously when I collapsed at college from the pain. Finally, they didn’t just think I was trying to get out of education. School and college wasn’t something I was trying to avoid, I wanted to be there!”

Holistic Care

Allana uses many different strategies to help with her pain, alongside medication. When she was introduced to Rethinking Pain, she had already incorporated some holistic techniques which she finds really helps.

“Music is a big one. It can help to confuse your brain. I put some music on; put the hoover on; distract my brain. It doesn’t work 100% or take away all the pain, but it’s enough sometimes to ground you.”

Allana spoke about how the pain affects her confidence and how she finds herself comparing what she can do to other mums. She also says that there is an expectation that she should look or behave a certain way at her age.

“Some people can be insensitive when they know you have pain and say things like ‘you look fine to me’. They expect you to be sat in a corner somewhere, absolutely unwell and screaming in pain all day. That’s not how long-term pain works.”

Allana’s told us how important it is to know your own body and be able to express how you feel to a medical professional who is open to hearing your story about pain and gives enough time to get an understanding. She said this was a turning point for her.

“My GP heard me out and finally gave me my fibromyalgia diagnosis, which meant we could start a more tailored pain management plan – looking at my medications and alternative ways of managing my pain. She then put me onto Rethinking Pain.”

Speaking Out

After her referral, Allana was given a dedicated health coach. It was after the initial contacts between them and attending a Rethinking Pain workshop that Allana realised her long-time dream of creating a pain related podcast might benefit other young people more than she thought.

“Speaking with other people at the group, it made me think people might actually want to listen, and that this could help other people as well as just helping me.”

Allana is now taking steps to start up this project with her Mum.

What Needs to Change

When asked what needs to change for young people with long-term pain to be better understood and supported, Allana said:

“Just more common ground of understanding and more pain awareness. Just having that doctor who was willing to listen to me, willing to understand, changed everything. I have had the experience of seeing how I was treated before [when younger] and how I’m treated now as an adult and sadly, there’s a massive difference.”

After attending the Rethinking Pain Young People with Pain focus group, Allana emphasised that more widespread awareness and people making reasonable adjustments could help young people who are struggling, to live more productive lives.

“I would love to go back to work but at present, that this does not seem possible.”

She also highlighted that awareness and acceptance that young people can and do struggle with long term pain, will help others get back into work.

“We need more inclusivity, acceptance, and accessibility [in the workplace and society]. Ideally, it’s just more people being aware and showing some flexibility. We can still be productive, even if we have pain.”

What Rethinking Pain Learnt from Allana

• Young people can feel a keen sense of guilt or failure due to having long-term pain, because of how it impacts on their family, friends and relationships
• There needs to be more public awareness that younger people can suffer from persistent pain
• If a young person says they have long-term pain, it should be believed and investigated
• Receiving a diagnosis and having your experience of pain validated can help young people to move forward with their lives
• Being able to tell your personal story and to feel people have heard and understood is important
• Health coaching from a pain-trained coach can support a young person with coping strategies and to plan and set goals for their future
• Young people are likely to welcome the chance to play a part in developing a pain pathway, that is relevant and fit for purpose
• Getting into work or back to paid work can be an ambition but we need inclusive, accessible workplaces that are willing to proactively accept people’s diversity and make reasonable adjustments.

Next steps for Rethinking Pain

• The Rethinking Pain team will combine learning from the young people’s focus groups and individual interviews and will share what we have discovered with appropriate partners, to form a joint progress plan or strategy
• With our partners, we will look into ways that we can begin to raise more awareness about persistent pain, specifically pain in younger people and their lived experience
• Rethinking Pain Health Coaches will gauge interest in a regular online pain peer support group for younger people, and implement one if feasible
• The RP team will plan and facilitate more young people’s focus groups, to hear a wide range of views from diverse communities, including geographical areas with higher incidence of social and economic deprivation
• The RP team will plan for the Understanding Pain and accompanying ten topic pain support workshops to run in person, online or as website modules, for a younger audience
• The RP team will combine learning from the young people’s focus groups and individual interviews and will share what we have discovered with appropriate partners, to form a joint progress plan or strategy.

Download Allana’s Story

What led to your involvement in the Rethinking Pain service?

My name is Mark, I have in the past been a logistics manager at a brewery in Tadcaster, an owner of a small cleaning business, and more recently worked in card fraud for a UK bank.

In life, I was never mega fit but was capable of walking 6-7 miles. I have persistent pain and other health issues, mainly type 1 diabetes and now aortic stenosis (narrowed heart valve) amongst other things!

In March 2021, I fractured two of my vertebrae whilst carrying a table with my wife. The pain was so bad I needed help to dress, shower and even turn over in bed. Since then, I have had many medical investigations that did not reveal the cause of my pain and 18 months on I still had pain, requiring frequent pain relief medication and physiotherapy.

In autumn last year my Doctor warned me that medication might not fully resolve my pain
(which was a sobering conversation). He referred me to various articles on mindfulness and managing pain and to the musculoskeletal (MSK) service at Airedale Hospital, where I saw a consultant, who in time referred me to Rethinking Pain.

What has your experience been with Rethinking Pain and what’s improved?

The referral from the physiotherapist was the easy bit; walking through the door of a community centre for the first Rethinking Pain meeting was not because I’d lost a lot of confidence. I did not really expect too much but was determined to see if something besides pills would help, even if it was only slightly as I was worried about issues that would crop up later in life. I also wanted to do it for my family as they had supported me so much.

I started with the Rethinking Pain Peer Support Group meetings. The team and others attending encouraged me to look at positive actions I could take rather than just focusing on the negatives of the pain, and the lack of progress. The staff were so friendly and supportive from the very first contact and this made those first steps so much easier. From there, I joined seated exercise classes. Yes, exercising! When you have pain you think moving more is bad but I now know it helps with pain. I then joined the Keighley history walk group, a singing group and seated yoga. I am about to start a blood pressure friendly cooking group and I am hoping to join a photography group later in the summer.

Participating in activities has been fun, it’s invigorating but also pushes me to keep going on days I am not 100%, as I don’t want to let people down.

The Rethinking Pain Peer Support Group and the Understanding Pain ‘Workshop’ helped me understand the bigger picture of my pain, like what pain is, how my body responds and how being more physically active can reduce and alleviate my pain – even if it can’t stop it. On my regular walk from the car park I felt something was wrong and it took me a while to realise it was because my knee pain had gone (hopefully for good) without me really realising.

The Rethinking Pain team has helped me with distraction techniques and have encouraged me to keep busy with activities and support. It has also been nice to help others who are not as far on their journey as I am now. I find I’m encouraging participants in one group to come and join other groups.

I have also met a particular Rethinking Pain participant who has been really supportive and encouraging. They have explained their journey and how getting involved with activities at Keighley Healthy Living (KHL) have helped them get better, which was very inspiring.

How has accessing ‘holistic, community-based support’ helped?

When I get Rethinking Pain support and enter the community centre, it’s like many hands are there to help and support me. I’ve never seen any of the team without a smile on their faces.

My confidence has returned and I feel positive about the future. I enjoy getting up in the morning and thinking about what the day has to offer. I am out walking again but so far have restricted my walks to 2 miles for the time being but hope to increase this in the summer.

I’m also much happier generally and my wife is less worried about what the future holds. She sees how much thinking differently about pain has helped me and she’s pleased I’m moving in the right direction; and we are now making plans for the future.

Has the service positively affected any clinical care or treatments that you receive?

My previously frequent GP and medical visits have reduced to almost nil. I’ve virtually stopped all my pain medication and I’m managing my pain better.

It’s difficult to believe how much I have improved in such a relatively short time. I am so grateful to my doctor, my physiotherapist and everyone at Rethinking Pain and KHL for supporting me to change my thinking and adopt some lifestyle activities that help me manage my pain better.

Both my daughters are currently living in New Zealand and because I feel better, my wife and I are thinking about a visit there, which only 6 months ago was never going to be a possibility due to the pain I’d feel over the 36 hour travel time.

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Rubina goes to the local mosque regularly. It was there that she was encouraged by the intezamia (a lady who supports engagement in the mosque activities) to join an exercise class, delivered by Happy Healthy You. The class was attended by ladies aged between 30 and 70 years, with gentle exercises taught in a combination of English and Punjabi languages by the tutor, Humera. Rubina said, “Because the intezamia suggested I go to the exercise class I knew it would be okay for me”. When Rubina first began exercising she felt stiff and a bit unfit but as the weeks went by, she noticed a big difference in her flexibility and mobility.

“I noticed the pain in my knees would ease after the exercises and for the next day the pain was gone or I felt much better”

Feeling inspired by the benefits of moving more, Rubina began doing the exercises she’d learned at home, and joined a walking group. Feeling better led to Rubina making other healthier choices, for example with her eating habits.

“Joining the exercise group and eating better has helped. I’m on a journey and I’m determined to do even better!When I went to the doctor, he told me my diabetes was more under control, and I told him, the exercise, was why”

Rubina next went along to Rethinking Pain’s ‘Understanding Pain’ workshop at the mosque. Here she learned more about managing pain and about how to get referred into the Rethinking Pain service for additional pain support. She also joined the Knit & Natter peer support group that Happy Healthy You had started, with Rethinking Pain’s support. There she learned to knit and also made new friends.

“I found a place to chat to others about life and through that you also get advice and support”

Rubina has become an exercise role model and now encourages other ladies to join the exercise classes and go to the peer support group.

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Olivia is 26 years old and lives in central Bradford with her mum.

Olivia suffers with headaches and widespread pain, which means it occurs on both sides of her body and above her waist. Olivia is autistic, struggles to sleep and suffers with anxiety. Due to these challenges, Olivia is not currently working.

When she was 20, Olivia went to university in York to study creative writing and British Sign Language. This was a difficult time for Olivia. She told us, “I was at Uni and Covid hit, then lockdown. It was awful, I was really struggling academically and socially”.

Olivia returned to Bradford during Covid restrictions and feels online study had not left her equipped for the workplace. She explained, “It was at this time I started getting constant headaches and I didn’t know why I was getting them. Then the pain spread to the rest of my body”.

The headaches were medically investigated but no cause was found for them, or the widespread pain. Olivia feels frustrated at getting no concrete answers and being told to manage the pain with paracetamol and ibuprofen. Olivia and her Mum talk about her pain and they believe she has fibromyalgia. She explained the difficulties she has had with getting medical advice and a diagnosis, “Having autism and anxiety, I have trouble explaining myself anyway. I don’t always understand what the doctor‘s saying so my Mum will explain what she thinks they mean to me.”

Olivia is also conscious of all the support her Mum needs to give in helping her with everyday tasks. She feels guilty and that someone of her age shouldn’t need help with things such as cooking and cleaning.

Rethinking Pain

In June 2023, Olivia was referred to the Rethinking Pain community pain service and was assigned a health coach, Matt. She also took up the invitation to join the Young People’s Focus Group, aimed at finding out what kind of support people under the age of 35 would welcome, to help them manage their pain holistically, and suffer from it less.

Talking to other young people, Olivia felt relieved to be believed about her pain and to get some support outside of her medical care. She has attended Rethinking Pain’s Understanding Pain session, diet and sleep therapy workshops.

“I’ve been to some workshops but I’m the only young person there; it’s all older people. Even though it was a bit odd being the only young person in the room, it was nice to hear the older people’s stories and experiences. It made me feel less alone because when I first had pain I had no idea other people lived with it, I’d just be alone thinking ‘Why is this happening, is there something wrong with me?’

Olivia wants to manage her pain better and has set goals for herself. She began attending boxing classes at her local gym and is using some relaxation techniques and mindfulness practices. She told us, “I try to do mindfulness and relaxation techniques and stuff like that. When I remember or find time to do them, I am able to reduce my anxiety, and my pain also lessens”.

Social Life

Olivia told us that having long-term pain as a younger person affects her social life and increases her sense of isolation and feelings of being different. She said, “I’ve only told two of my friends about my pain. It didn’t make me feel any better to be honest because it’s just me going through this pain. They try their best to be sympathetic, but they don’t really understand or know what it means to have this constant pain, affecting every part of my life.” Olivia spoke about how the pain affects her social life and ability to do everyday things a young person would. She said,“The pain limits me a lot because I’m knackered all the time. I’d like to do more stuff, but I just don’t have the mental energy for it” Olivia explained the pain affects her behaviours, “I have to use my energy more wisely and do stuff when I have good days, like when I have a clear head. I get brain fog as well and that affects my memory and the pain really affects my concentration. I can’t study as much as I’d like to, it’s just all very difficult when you feel like this”.

Coaching

Olivia spoke about social norms and stereotypes. “There is a stereotype that pain is for older people and there are expectations, of what young people should be doing, how they should be feeling. My pain changes that, but that’s invisible to people”.

“Having a Rethinking Pain health coach helped. It’s good just to talk through problems and things, not always put it on my mum. My coach encouraged me to go to the Rethinking Pain workshops, keep doing my boxing and mindfulness and set some manageable goals for myself”.

What needs to Change?

When asked what needs to change for young people with long-term pain to be better understood and supported, Olivia said, “I think there needs to be more awareness about young people in pain. When I first started getting pain, long before I was referred to Rethinking Pain, I thought I was the only one who got it, that young people don’t get pain. I’m also sure most people don’t think young people would have pain everyday”.

After attending the RP Young People with Pain focus group, Olivia told us, . “It was interesting to talk to others and hear more about how pain is affecting the lives of other young people. It just felt more relevant to me”.

What We Learnt from Olivia

• There needs to be more awareness locally and nationally that some young people have persistent pain, and about their lived experience. Increased awareness may increase chances that they are believed, are better understood and supported.
• Understanding Pain and other Rethinking Pain workshops on varied topics need to be set up and run for people in a younger age group.
• Olivia appreciates the health coach discussions and goal setting support she receives. It also helps that her health coach is in a similar age group.
• Olivia would prefer to attend Rethinking Pain workshops and access community activities that are designed for and delivered to young people.

Download Olivia’s Story

Richard lives with multiple, complex medical conditions, he has debilitating osteoarthritis, chronic backpain, interstitial lung disease, a heart condition and carpel tunnel syndrome. He takes 12 different medications and is now unable to
work. His medical care is under several specialist GPs and consultants.

Richard was referred to Rethinking Pain through his GP, who was part of th MSK (musculoskeletal conditions) Pain Service, when he could no longer continue with a certain medication and was seeking a stronger pain relief. His GP suggested that because his pain is lifelong. gentle exercise such as Tai-Chi and strength building movements might be an additional avenue to help him manage day-to-day.

What we did

Richard started exercise classes through Rethinking Pain. Yoga was something he’d never considered but after feeling better from moving more he decided to give yoga a try. The class could be done seated or stood up, depending on what participants could manage and Richard also signed up for extra one-toone support for his pain with a trained Yoga Therapist. Richard was followed up with one-to-one time with the therapist to focus on hisindividual physical and mental health needs.

“I learnt how to breathe for the first time! My one-to-ones taught me how to breathe! I also learnt how to move and hold my back and most of all… I’ve found my feet! I can use my toes! I actually walk differently!”

Has There been any Change?

“I’m a different person from who I was before. I had been self employed and I couldn’t go out to work. I was quite often lying in bed until 2pm in the afternoon with nothing to get up for. People around me now say ‘what a difference in you’. I now come to KHL and do Yoga on Mondays, Ballet-Be-Fit Tuesdays, Positive Strength on a Thursday and Tai Chi on Fridays! Oh, and since coming here I’ve started cooking. I’ve realised what I put in my body makes a difference.”

“My breathing also seems to have helped me with my heart. I feel more in control. I don’t think I’m in less pain but I seem to be able to manage everything better”

When Richard took his first call from the Rethinking Pain team he was at a low point, struggling with the fact that his pain was life-long, feeling isolated and also that he’d come to the end, in terms of how medicines could alleviate his daily aches and pains.

Richard said how vital it had been that his GP & MSK Service referred him to community-based health options, as otherwise he may not have known about the community-led support on offer, right there at his fingertips.

His Rethinking Pain journey begun with several phone calls and getting to know & trust the team. Richard decided to come into KHLs community centre and attended the Peer Support Group. Step by step Richard found exercise classes, appropriate for people like himself, helped him with his physical and mental health, but also joining in meant he had a more active social life. Richard went from 1 class to 5, and has made new friends in the groups he regularly attends.

Richard has also found for himself a meaningful role with the Rethinking Pain team. He has become a champion in awareness raising to people in a similar situation to himself locally (and nationally through sharing his story).

Richard promotes how a more holistic approach to managing MSK conditions and pain helped him. His story about how he has benefited and was supported is heard morereadily by people with health conditions, because they know Richard is more likely to understand, being an expert by experience himself

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Anastasia’s story before rethinking pain:

Originally from Ukriane, 43 year old Anastasia now lives near Bingley and works in a local primary school. Her son has a long-term medical condition andspecial needs but she has the support of nearby family and friends.

Anastasia was referred to the community-based Rethinking Pain Service by her GP inMarch 2023 after experiencing long-term pain in her hips, back, muscles and joints.She was diagnosed with fibromyalgia and chronic fatigue. Anastasia’s GP advisedher against using medication that irritated her stomach but found the alternative oftaking paracetamol gave her headaches.

At the end of her working day, Anastasia needed to take a nap just to be able to getthrough the evening and complete everyday tasks, like cleaning or making somefood. Her pain meant she couldn’t walk around for more than 20 minutes, and shemissed her family walks. As a consequence of her pain, she was now afraid to do anyexercise, including low-impact stretching and yoga in case it made her pain worse.

“BEING DIAGNOSED WITH FIBROMYALGIA WAS NOT EASY. I DID NOT KNOW WHAT TO DO ORHOW TO CONTROL MY MUSCLE PAIN ANDFATIGUE, AND PAINKILLERS WERE CAUSING MEPROBLEMS OR WEREN’T WORKING”.

Anastasia‘s Personalised Plan:

Anastasia and her coach started work together by using pain self-management tools to enable herto set realistic and achievable goals for herself.

Anastasia attended Rethinking Pain’s ‘Understanding Pain’ workshop after which her health coachdirected her to ‘Ten Footsteps to Living Well with Pain’ which is a free, step-by-step online guide toliving well despite persistent pain. She is also attending additional Rethinking Pain workshops onspecific topics, like diet and sleep

“I MADE A WALKING GOAL, OF INCREASINGWALKING BY 5-10 MINUTES A DAY AND TO DO 5-10 MINUTES OF YOGA. THE END RESULT ISFEELING I’M FEELING LESS TIRED AS I LEARNT HOWTO PACE MYSELF AND I NO LONGER NEED TO SLEEPAFTER A WORKDAY.”

How Anastasia‘s life changed:

“I received so much useful information, links and videos from my pain coach; learning how toaccept my pain condition, and importantly, what I could do next. Rethinking Pain’s video ‘YouAre More Than Your Pain’, which uses various colours of play dough to explain how painaffects our lives, was a powerful and a moving moment and a point of change for me.”

“My coach also talked me through the Rethinking Pain website, where I found the MovementMatters stretching exercises useful, and I realised how I must go back to very basic moves (noteasy for me, as I used to be a fitness coach and ran 5kms on the weekends). The mindfulnessexercises were great too. After another discussion with my coach, I set new small, achievablegoals and started moving more, but more confidently every week. After a few weeks I realisedthat the pain was up and down and not so constant anymore.”

“At last, I am feeling much better and enjoying life again. I understand that I will never be thesame person or as active as before but I am happy to be able to walk with my husband, son anddog for 40 minutes!
I do not often feel pain in my muscles and joints now and if I do, Iremember to slow down and let my body recover and rest more. My mood is better too as I feelhappier and a bit healthier.”

“I would like to thank my pain health coach and the Rethinking Pain team for supporting me through this last year. I hope telling my story will inspire others in daily pain to try alternative ways to cope and live with it.”

Download Anastasia’s Story

Reason for referral to Rethinking Pain:

Pam lives in Bradford and is in her early sixties. She has lived with daily pain for several years and has a diagnosis of transverse myelitis and osteoarthritis Pam told her Rethinking Pain health coach that she often suffers with spine
pain and unpleasant tingling sensations in her back. Her pain has significantly affected her emotional health, relationships and quality of life. Pam is also caring for herhusband who is recovering from his second cancer diagnosis. His cancer has made Pamfeel stressed and worried, which she says, exacerbates her pain.

What Rethinking pain did, together with Pam:

Pam was referred to the Rethinking Pain Service by her doctor. Her assigned health coach was in touch withina couple of weeks and Pam told them, “I’m so happy you phoned, I’ve not known which way to turn”. Pamwas keen to get any holistic, local support Rethinking Pain could introduce that could improve her self-careand experience of persistent pain.

Pam takes pain relief medicines everyday (Gabapentin and Co-Codamol) but she told her health coach “I’dlike to become less dependent on my pain tablets”, saying “They aren’t working like they used to and I knowthey can’t be good for me”.

The Rethinking Pain health coach signposted Pam to online support, social groups and a nearby exerciseclass. She was initially anxious about physical activity but with gentle encouragement she came to a pointwhere she accepted and understood that moving more could be beneficial to gain strength and ease her pain.

Pam attended the ‘Movement Matters’ exercise class, which Rethinking Pain initiated. The reason Pam feltsafe to try to restart exercise was that the class was for people with long-term pain and associated healthconditions. She said,
“I trust it because the tutor knows we all have aches and pains, that we might not be ableto do it all… and the people going, they don’t judge me, they understand cause we’re in the same boat”.

Outcomes for Pam, to date:

Pam is now attending the Movement Matters exercise group every week and has noticed an improvement inher pain and mental wellbeing. She also feels less isolated and is pleased to have an opportunity to talk toother pain sufferers.

“My heads a bit straighter from going, and it definitely helps my back… I’m getting to know some more people”.

“Thanks [RP HC] for your encouragement, honestly I feel a million times better.”

Future avenues Pam identified she’d like to explore:

• Local social groups
• Reduce use of pain medications
• Continue ‘Movement Matters’ exercise class

Download Pam’s Case Study