_{International Fibromyalgia Awareness Day –}

Please note that I do not, and never have, claimed to be a health professional and this message is written purely based on observation, conversations with people living with chronic pain, and personal opinion. I do not give medical advice and neither does this post.

_{The affect of NICE guidelines for treatment of chronic pain}

Right now what is making it worse is that NICE have issued guidelines to doctors that see patients losing pain medication prescriptions in favour of alternative therapies.

This alongside CBT (Cognitive Behavioural Therapy), which I actually personally believe is a valuable form of therapy within the realms of pain management. It doesn’t mean you are making your pain up at all. The treatment helps you to alter the way you think about your pain, how you react to it and gives you the tools to change how you do things so that you can reduce the impact of your activities that cause your debilitating pain. Changing a negative view into a more positive way even through the use of language and the way that you speak about it.

However, this is not explained to people resulting in them believing their pain disorder is psychosomatic. This is something that we have lobbied hard for a long time to stop.

_{Find the NICE guidelines published 7th April 2021 here}

https://www.nice.org.uk/guidance/ng193/resources/chronic-pain-primary-and-secondary-in-over-16s-assessment-of-all-chronic-pain-and-management-of-chronic-primary-pain-pdf-66142080468421

_{How are fibromyalgia patients coping?}

There is nothing wrong with trying such therapies but it has always been my experience that doctors do not know enough about them and therefore have never endorsed them as viable treatments.

It is not safe to just go off and try new holistic medicines and therapies without seeking advice from health professionals. This is hard when health professionals have no idea what advice to give. It has become clear from patients on our network that they are being left in serious pain from medication withdrawal and are not being prescribed alternate therapies at all. My latest conversation regarding this only happened yesterday and it is something that will only increase.

However, I’m not saying that fibromyalgia patients aren’t open to trying alternative therapies. After all many of us adapted to using them alongside our pain medications anyways. I have been using them for nearly three decades. The combination works well for many of us. We have to be careful and not all therapies are suitable for everybody. What is upsetting people is the fact they can’t afford to pay for such therapies and doctors aren’t prescribing them. So they’re left in limbo with no pain medications and unable to afford the alternative therapies that NICE say must be the treatment given to people with chronic pain conditions.

_{Despair, anxiety and quality of life}

The fibromyalgia communities are now facing despair among its members. Members that do not tolerate many holistic treatments for varying reasons that pertain to other chronic conditions that they have. Having their pain medications taken away is causing high levels of anxiety, and depression, within our communities as patients cannot cope. What often goes unheard is that their families also suffer and also cannot cope as there is nothing that they can do either to help ease the pain of their loved ones.

For many they don’t have much quality of life to begin with and the pain medications give them just enough to improve it slightly. Now they have reverted back to having a very poor quality of life, which in this day and age of where healthcare pathways are meant to be improving our quality of life it is pretty disgusting.

_{Stuck in a rut unable to provide solutions for those with fibromyalgia}

Our work as an organisation needs to be able to reassure people and help point them towards solutions. Unfortunately, there is nothing that we can do to help a member get a doctor to revert their decision regarding removing a patients pain medications. This leaves a huge black hole for us. A negative with no hope of a solution. We could start a petition but it has been made clear that these guidelines will not change. The chance of a petition making any useful impact is slim.

This means that after years of battling to be heard, and for fibromyalgia not to be seen as ‘being in our heads’ that the outlook has reverted back a decade or so!

Carole Scrafton 12 / 05 / 2022

Please note that I do not, and never have, claimed to be a health professional and this message is written purely based on observation, conversations with people living with chronic pain, and personal opinion. I do not give medical advice and neither does this post.