How To Best Manage Agony If Your Pain Relief Medication Isn’t Approved

Why do they refuse to treat you when they know the agony you experience without your chronic pain medications? Is it something you did? These are genuine concerns in the chronic pain community right now. 

The NICE guidelines were introduced formally in 2021, possibly impacting on professionals treating patients. There are legitimate concerns about this leading to many doctors refusing pain relief medication to patients with chronic pain.

Alongside this, the media are portraying those in the chronic illness community negatively. So I want to address some of these awful stereotyped viewpoints and share how living with chronic pain can impact those who are isolated. 

People living with chronic pain symptoms have to manage if they aren't prescribed pain relief medication or have it removed and social media provides a community that benefits you. It is a platform for sharing your experiences and solutions. 

What Are The Guidelines For Chronic Pain Management

The World Health Organisation classes chronic primary pain “as pain that persists for longer than three months and is associated with significant emotional distress or functional disability that cannot be explained by another chronic condition.”

NICE only recommends exercise, antidepressants, Acceptance and Commitment Therapy, Cognitive Behaviour Therapy and Acupuncture for treatment and management of chronic primary pain. Read my article about the NICE guidelines for the details.

The guidelines state there was no evidence that pain management programmes, therapies or preventative medications were effective, however, the research used did not use large studies which leaves the guidelines woefully inadequate. Read about The British Pain Society’s view here.

There’s a long list of pain relief medications the guidelines state as being ineffective for chronic pain, including opioids, paracetamol and many commonly used painkillers. Yet they do recommend antidepressants which seem lacking overall. 

The Faculty of Pain Medicine states there is a “real risk that those classed as having “chronic primary pain” will include large numbers of people… to whom this guidance should not apply.” The likelihood is that Doctors will misunderstand and misuse these guidelines in managing pain and patients.

The NICE Guidelines And Chronic Pain Symptoms 

As I read these guidelines I felt sick with the idea that others may have my experience of debilitating pain and not get help. Let’s be real, I’m consumed with chronic pain symptoms so my GP does prescribe pain relief medication so I can function, and I am still stuck in bed nearly every day due to the severe pain. 

The guidelines aren’t rules, so you can advocate for individual treatment for your chronic pain symptoms, using this section of the guidelines: “When exercising their judgement, professionals and practitioners… [have] the responsibility to make decisions appropriate to the circumstances of the individual”.

This Pain Concern statement shares concerns raised by Blair Smith and Lesley Colvin that “chronic pain has such an important impact on the lives of people who live with it that we need every tool available in our toolbox to help in its management.”

Many chronic pain patients rely on [pain relief medication] to achieve any quality of life. I know chronic pain is torture, dominating every moment of the day… We doctors need to be compassionate and carefully talk to our patients and assess the various complexities of their pain, as it is unpredictable what will work. We need to remember… it could be any one of us.

Dr Rajesh Munglani

These guidelines are causing patients real distress when they are already living an unpredictable life consumed with chronic pain symptoms. Many patients already feel isolated and misunderstood. With such a complex symptom we still need to access pain management clinics and pain relief medication.

What Is The Media Saying About Pain Relief Medication 

The BBC have asked over 4,000 adults aged 16-75 about chronic pain experiences. The results suggest 1 in 4 people in the UK live with chronic pain and 45% say their daily life is affected by chronic pain symptoms. 

It goes on to talk sensationally about someone’s experience of persistent daily pain and how their experience was made worse by taking pain relief medications. In my opinion this is clickbait, one-sided journalism. It goes on to say: “It's so easy to sit at home and take a pill and fall asleep. The other way to go is to… basically have a laugh - because while you're laughing you're not crying.’” Kev Howard, organiser of a peer support group at a pain clinic says. Read the full article here.

This infuriates me, as taking pain relief medication is the only way I’m able to get out of bed and have low enough pain to laugh. If I go to the hospital I have to take painkillers to get to the car and sit in a waiting room. In fact, taking pills actually enables many people to function. There is no one size fits all solution. 

A second article by the BBC, quotes Dr Mark Hainsworth who “wants to see a different approach to dealing with chronic or persistent pain, to help prevent the rise in "opiate hermits", people unable to work or exercise.”

This, in my opinion, is a damning view of those in chronic pain. It doesn’t recognise that those with extreme chronic pain symptoms do not choose to live isolated lives, nor that most try alternatives to pain relief medication. In fact, I’m now able to exercise again, because I have the right balance of opiate medication and because I’ve had Physiotherapy to help myself. 

The commentary on prescription opioids seemingly aims to shame those of us whose pain is life limiting, despite trying or still using alternatives to pain relief medication. There is little recognition of a patient's individual needs in these cringe worthy pieces of journalism. But the media hasn't finished yet.

How Social Media Benefits Those With Chronic Pain Symptoms 

On the 7th September 2022 The Daily Mail published an incredibly negative story that offended nearly everyone I know in the chronic illness community. The clickbait headline said - Addicted to being sad; and it gave another one sided article. Vulnerable young adults’ social media posts were shared without consent. The author writes that teenage girls are posting online as ‘Spoonies’, conspiring together, faking their illness or twisting their chronic pain symptoms to get the diagnosis they want, for attention and seemingly fame. 

This article questions the actions of thousands of people living with chronic pain symptoms and complex conditions. As you can imagine, the repercussions of this article rocked the chronic illness community. I was hurt that the ableist society was louder again, judging those of us who are in pain.

The ‘spoon theory’ helped me in the first months of my illness. Written in 2003, it explains how spoons represent the energy you have for a day, with each activity taking away a spoon until you run out. It’s a well recognised explanation of chronic fatigue for any condition. Read about the ‘spoon theory’ here.

One weekend during this time, when I was seeking answers, I was struck down by unbearable pain and new, strange chronic pain symptoms. My husband was out and I started panicking but managed to contact a friend I’d made in a Facebook support group. She helped me until my husband got home.  I ended up in A&E, prescribed multiple pain relief medications by my GP, including opiates. I couldn’t have managed without her support, that of someone who understood exactly how I was feeling. My husband is amazing but he, thankfully, doesn't know what it’s like to be in so much pain, for so long. Read about my story here.

As I reflected back on my world, I realised how lonely I would be without the support I've found on social media. From when I was first ill and found answers by sharing my chronic pain symptoms to the amazing friends I've made along the way.

The thought of that not being available to others with chronic pain symptoms is horrifying. You learn from each other by sharing your conditions and stories on your own terms. There’s no pressure to share as a ‘victim’ or to exchange pain for likes.

What is there, in fact, is a genuine community supporting each other, looking out for those with new diagnoses and a collective effort to educate people about invisible illnesses and chronic pain symptoms. I know that I, and many others, share for awareness, not sympathy and that this benefits everyone. 

Without this I doubt I would have had the treatments and surgeries that have given me back my ability to communicate, and more. I probably wouldn’t be invested in alternative therapies which help me alongside my pain relief medication, and I wouldn’t have a job as a patient advocate writer. 

The Takeaway 

I am incredibly thankful that my GP works with me to create an individualised treatment plan. I feel that everywhere I turn options that help me are being taken away from others and it makes me feel so angry that one piece of guidance can do this. 

I’m concerned that the pain relief medication that helps me sit up, could be taken away at any time, which is distressing. The media’s imagery of opioid hermits makes this possibility more real for me, and everyone else out there in constant pain. 

Picture-perfect snapshots on social media can be harmful for vulnerable people but I don’t accept the Spoonie community encourages harmful content. In fact, those with chronic illness find others who understand and support each other. Sharing images of your authentic experience of being chronically ill, shows the world your reality which helps raise awareness.

I’d love to know what you think about this? If you are a part of the Spoonie or invisible illness community, does social media help you? 

Join my Strength Of Tears Instagram community now.

✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬆  Hit one of those sharing buttons or save these images to Pinterest and I will do a bed-bound happy dance - there's an image for you!