Hi everyone, I'm an NHS based Trainee Clinical Psychologist with an interest in chronic pain.
I am running an online study as part of my training targeted at those living with chronic pain following an accident or injury (I have been approved by Pain Concern as a registered researcher).
My study aims to better understand how injustice and unfair treatment may increase a person's risk of experiencing pain more intensely.
In my experience, people living with chronic pain often feel that professionals have not fully understood them. I am a firm believer that getting the right help firstly involves working with someone who is highly compassionate and fully invested in getting to know you better. Do you agree?
The results from the study will be published in a major pain management journal that will help better inform pain management treatment. All your responses will be fully anonymous and you will not be asked to provide any personally identifiable information.
If you want to participate you can access the study via the link below, it should only take around 10-15 minutes of your time:
Regardless of whether you would like to participate or not, I would love to open up a discussion here about whether injustice and unfair treatment has been a common experience throughout your journey so far?
It would be nice to hear your experiences and we can all offer some support!
Warm wishes,
Craig
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hello, I will complete your survey. I don’t think injustice’ increased my pain but it did cause additional stress. I have spinal cord injuries and it wasn’t until I got 3 secondary conditions that pain became a real problem. But the injustice only happened recently. My GP understood my condition but when I moved last year - the GP wanted to cut my MST. I was ok with that but at one point I started to get a lot of breakthrough pain. It took a lot to get them to stop cutting at this point. A lot of stress, despite SCI, an amputated leg, osteoporosis and kyphosis- all when I’m under 55.
I think people who don’t have an established diagnosis or a contentious diagnosis suffer a lot more - simply because chronic conditions and so called invisible disabilities are not fully understood
Absolutely, the term 'medically unexplained symptoms' never sits comfortably with me. In my experience, people can come to believe that their pain is being perceived by others as less serious and almost minimised as being 'in their head'.
It can be incredibly invalidating for someone who is clearly in a lot of pain to not have greater certainty about what is going on for them. In my opinion, science has not developed or advanced enough yet to utilise scans and tests that are capable of physically detecting the presence of numerous pain conditions. Because of this, many conditions may be classified as medically unexplained until our knowledge progresses.
It will be interesting to see how this changes over the years with the advancement of new tests and diagnostic screens that go further than a simple MRI..
I have a friend with fibromyalgia and at least one other condition. She had trouble getting benefits she was entitled to and has experienced staff who were unwilling to listen and instead were judgemental in approach. This has meant she things twice before asking for help. It feels so wrong because I have ‘established’ disabilities but she’s in pain and doesn’t get the same consideration. .
I've listened to studies conducted by my colleagues who have found that professionals can sometimes feel less empathy towards people who have medically unexplained pain. Obviously this doesn't apply to everyone, however, it is more common.
I can understand how frustrating this can be. Especially after spending years chasing a diagnosis. However I have a slight different problem but still just as frustrating. I've been told what's wrong with me and it's progressive. But I'm also told there is nothing that can be done to help me. So the doctors throw their hand up in the air and tell me to try some other Specialty.
That sounds tough. I hear many stories about patients finally receiving a diagnosis only to then be told nothing can be done to help them.
I imagine this must feel like a major anti-climax. On one hand the diagnosis has validated your experience of pain. However, it seems like you are now left in the dark with the uncertainty of thinking 'what next?'
Particularly if it's progressive. I imagine you have many unanswered questions.
Did the team/doctor/s signpost you to someone who could continue to offer you support?
I think you've captured a really important point here, it's not always about experiencing injustice at the point of acquiring pain after an injury or accident. Actually, many people may experience injustice longer down the line when having to navigate the complexities of the healthcare system and fighting to get the right treatment that they need.
How was it you managed to get the GP to not change your medication in the end? I'm just wondering how other people in your position can get some advice on what worked for you?
Getting the GP to stop cutting the medication was a mix of things. First - he actually saw me on a home visit (lucky because home visits are usually carried out by another provider). During the visit he carried out an examination of my back.
Secondly, the care company manager became aware I was in a lot more pain than usual so contacted the GP.
I also asked my mum to drop in a letter I had written about what this breakthrough pain was preventing me from doing - and the additional help I needed as a result.
I think these three things - him seeing my back -me expressing my concerns in a letter and the care company phoning the surgery meant they stopped cutting.
I'm sure some people reading about your approach may find it helpful if they are in a similar situation.
It's nice to hear that you had people advocating for you and standing by your side. What always worries me is when people don't have this and feel isolated and left fighting alone.
A brief reply - I agree with MST King. Being treated poorly or not at all doesn't make physical pain worse, but it does effect how stressed you feel. I have had ME (CFS) for many years and had very little help from doctors. My current GP is helpful only in that he respects my experience, listesn and does what he can. As an ex-nurse I know how to talk to doctors. The ongoing pain during a bad relapse of ME was unbeareble, but at the time I had no pain relief. Pain can be very hard to explain and there are, as you will know, very different types of pain. I have found sometimes you need to use the 'right words' to trigger doctors medical understanding about a problem. A busy GP can easily dismiss someone who is stoic and understating the level of pain they are experiencing.
As I now have spinal issues (plus some other medical conditions) I am now on cocadamol and nortyptaline at night. I attended a Pain Management Course for several weeks run by a physiotherapist and a psychologist and found this very helpful at learning how to manage ongoing pain and chronic illness. I'll complete your survey later.
Hi, firstly thanks for taking part in the research - it is much appreciated!
I completely agree, it's not so much that the experience of injustice directly worsens pain. The existing research points to the idea that injustice creates other states, for example anger and stress. It is these states triggered by injustice that may then go on to worsen pain.
From this, we can look at injustice as having a somewhat indirect impact on pain, rather than a direct one.
The use of language and the choice of words when interacting with professionals has really got me thinking. I work with many patients who can't quite put in to words what they are experiencing. Like you said, some people also find it incredibly difficult to seek help in the first place and may have a tendency to use language that minimises their pain to some degree. It's a shame that some people may have to acquire the right level of vocabulary and medical jargon to 'trigger' professionals in to helping.
It seems like the language used may be a form of 'currency' that determines whether you get the right level of support or not?
Definitely something for me to consider and have a further think about.
would I have consent to include our conversation as part of the write up for my thesis? It helps give context to the findings, thank you very much! Craig
I don’t think she is - though I know she s involved in some support groups online but I think they are peer support rather than officially run. What would you advise?
Fibromyalgia Action UK is a charity that might be able to offer her some more targeted advice and specialist support.
They offer face to face groups around the UK. They also have a forum specifically targeted at people with fibromyalgia, it has lots of sections about working with professionals, GP's and medication related issues.
would I have consent to include our conversation as part of the write up for my thesis? It helps give context to the findings, thank you very much! Craig
Hi Craig, yes I do believe that finding the right health professionals to help you on your pain journey is vital and makes a huge difference to how you view the pain eventually. I still remember a lot of the negative comments said to me over the past 5 years which have affected my pain and taken away any hope I had that it might go eventually. I will do the survey and hope that it helps with your important research.
It's difficult to read that this was your experience, sometimes the only thing that keeps us going is to believe that one day things will be different. Whether that be a life without pain, or even reaching a place whereby we can learn to live with it better.
Do you mind me asking, what specifically was said by professionals that stands out as being the most unhelpful for you?
I'm genuinely curious to know how I can have better conversations with patients to better instill hope for them.
Thank you for taking part in my research - it's much appreciated! If you would like to know the outcome once it is published please e-mail me at: b1225631@live.tees.ac.uk
One GP said "You are just very unlucky" when we were discussing my pain. A nurse on the pain management course said "Stop wishing that the pain will go away or improve, from our experience, it doesn't go away", you are better off learning to manage it. On the other hand, they did say that practicing mindfulness regularly, has been scientifically proven to alleviate chronic pain over time and reverse it somewhat. A consultant also said "once you have chronic pain, there are changes in the structure of the part of the brain that registers pain, it enlarges and it is difficult to reverse that". He recommended Biofeedback to check how my brain was handling stress. All the treatments that would have helped me psychologically and physically are not on the NHS, biofeedback, hydrotherapy, acupuncture, massage, seeing an Osteopath. Much of the information I have been given has been to live with it which is extremely difficult when you have lived 50 years pain free and fit up until the point of the injury. I also don't really know if the pain is Complex Regional Pain Syndrome of not as I never had a proper diagnosis of that. If stress is the cause and you are an anxious person, it can be a life's work to change, even if you know you have to.
I think it's human instinct to say 'stop thinking about it'.. but in my experience it often has the opposite effect and we end up thinking about it more!
It sounds like acceptance is the message that is being given; however, it's easier said than done isn't it - it's a very challenging place to reach. It might almost feel like your resigning yourself to a life of pain if you do this?
It's a difficult period of adjustment, especially if you have lived without it for 50 years like you said. I compare to a bereavement, it's like losing a part of yourself.
Yes exactly on all points. It's a pity the treatments that would really have benefited me 5 years ago were not available unless I paid for them, which I did as I was totally desperate.
If I could give you any advice, it would be to try and give hope to patients, even if the pain doesn't ever go away, I think if they have some kind of hope to cling on to, it might help.
Definitely, it seems like going in too strong with acceptance based advice is unhelpful for many people.
I'll need to think about that, it's tricky as you're trying to get that balance between encouraging people to accept what we can't control...yet..not disheartening people so much to the point they fell they can't do anything about it (as it's completely possible they have just not found the right treatment yet!).
hi PainGo1 would I have consent to include our conversation as part of the write up for my thesis? It helps give context to the findings, thank you very much! Craig
Hi, I will complete the survey, happy to. It doesn’t affect my pain but it does increase my depression and anger at the whole thing. I’m a bit different. I have a diagnosis but professionals seem to boo-boo me when I’m trying to explain the bad pain I am in. The most common phrase I get is that ‘ you’re too young’.
The biggest benefit I could ever have ( apart from pain relief) is talking to someone that understands me and listens to me and what I am saying about my pain. Even when applying for PIP they backtracked and said we believe you can walk further… etc. I have completed everything that has been offered to me over the past 20 years but just to have someone listen properly to me would mean the world. sorry to go off on a tangent.
This is interesting and thanks for sharing with me. I have found that sometimes persistent pain has quite an ageist view in that other people find it to be more surprising when it affects a younger person. In your experience, it seems like they don't take your explanations as seriously because of your age? Have I picked that up wrong?
Don't apologise for expressing yourself, that's what these platforms are for. Has anyone ever offered you the opportunity to talk to someone? A counsellor or psychologist?
Thanks for taking part in my research - it is very much appreciated.
You got it completely right, it seems they find it hard to believe but for me personally it makes me feel like they think I’m lying ( no idea why anyone would lie about pain) and it really gets to me. I have spoke to someone before but that was many moons ago. I recently paid for some pain relief treatment and ended up in hospital with an infection, but NHS physio said if I had no relief from the injections ( actually saying to me I doubt they will work) that I can contact the department to attend a pain course.
Sorry for the late reply to this, I overlooked this one so I do apologise!
Definitely consider the pain management course, it can teach you some strategies to help adjust to living with pain. It's certainly not a magic wand! But I have found some people find it really useful.
Let me know if you need any help finding a local course if you're struggling getting on to one in the NHS. There are many third sector options too!
Hi ShelleyPa would I have consent to include our conversation as part of the write up for my thesis? It helps give context to the findings, thank you very much! Craig
My problem goes back to 1999, when I was involved in a serious RTA. I spent over a week in hospital with a fractured sternum and neck pain. Shortly after I developed a pituitary tumour, which is something that GPS do not fully understand. At that time I was under the guidance an endocrinologist. It was then I began to experience neck pain and other symptoms involving pain. My endocrinologist sent me to see a neurologist who performed MRI scans on me. Fast forward to 2014 and I was in massive pain, so I went to see my GP, who said to me you’ve got to let go of this there’s nothing wrong with you. It was then I requested an appointment with a neurologist which he arranged. Over the years until this day I have requested physio, but for some reason was referred to pain management, which did not help, then to muscular skeletal, who gave exercises that really used to hurt me after a week of doing them. I most recently requested my medical records, but deviating back to my visit to the private neurologist, when he said as I was leaving, one thing I do know is that you haven’t had much support have you. This left me wondering throughout the years what did he mean by this, that was until I Received my medical records and realised the reasons why. The Neurologist that I was referred to, was the same neurologist that my GP had sent me to privately, who had carried out MRI scans, for which I now have the reports, along with the letter that my GP had wrote to him. Basically the GP had written that he was referring me as i appeared to not accept that I was ok, and I was convinced that I had neck and head pain. He went on to say that it was of his opinion that I was more of a phycological case than a medical one, which has left me feeling insulted, and the reason why GPs have been reluctant to refer me to , but hat is my opinion, as over the years I have been in three practices, all with the same result. Finally today I am in attendance of a Neurosurgeon and awaiting results of a further MRI scan of my cervical spine. Thank you.
I live here in the United States I'm not sure if I can complete your survey or if I would be allowed to I would be willing to participate if allowed as I have suffered chronic pain now since 2012 and it does a lot to your mental state as well as your physical abilities it just really takes so much away from you piece by piece you become smaller and smaller
The survey can be completed by anyone with chronic pain who has experienced an injury, regardless of the country they come from. Therefore, you are more than welcome to participate!
You describe such a profound sense of loss here, both physically and mentally; this stripping of yourself you describe is very common in chronic pain. You're definitely not alone here.
I find that people who lose their sense of self often wish to get this back; this often requires exploration to see how this can feasibly be accomplished, all whilst managing the pain simultaneously (which is often a great challenge!)
Just an update. The study has now closed and I would like to thank you all for participating. We have over 115 people who have taken part and I am now in the process of analysing the data.
I was hoping to use some of the discussions we had here to be included in a publication and for my thesis, as I think they really give lived experience to the data.
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