Rethinking pain

People’s Stories

Inspiring stories and examples of how people have managed their pain differently.

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Stories

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Shazia's Story

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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Bushra's Story

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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Mark'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's Story

Rubina is 64 years old and lives in the West of Bradford with her son and daughter in law. Rubina has a positive approach to life even though she has been living with arthritic pain in her joints, especially in her knees, for 30 years. Rubina also suffers with back and shoulder pain and has type 2 diabetes.

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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Richard's Story: How Yoga Helped him

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

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.”

 

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Pam'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

Pain: If Only I'd Known

Watch

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Mark’s Pain Story

Stella’s Pain Story

Ann’s Story

How moving more and setting goals has helped with persistent pain

Abida’s Story

How gardening and nature can help when living with pain

Ranuka’s Story

How walking has helped with persistent pain and emotional wellbeing

Richard’s Story

How small changes helped his pain and improved his quality of life

Satwant’s Story

Movement Matters and why

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