I believe some of the information I was given may be of use to people who are interested in learning more about chronic pain, so I have included links where possible in case you want to explore further. I’m aware most people haven’t “nerded out” to the same extent as me, and I believe pain education is hugely important to those living with chronic pain conditions. The pain education guidebook I keep referring to is available to read for free online, here, and uses a biopsychosocialmodel approach.

I was referred to pain management for my Fibromyalgia in September 2021.

Initial pain management appointment

The appointment took place on November 10^th. I don’t feel like he bothered listening to me, at all. If he had, he’d have realised the same thing that all of the other healthcare professionals (GP, Rheumatologist, Physiotherapist, Occupational therapist) I have come into contact with during my fibro journey have. That I am doing everything within my power to manage. He just kept talking at me. I kept trying to jump in to finish his sentences so that he understood that I already knew what he was telling me. I have read everything I can find to do with pain science; from charity resources to research papers in medical journals. I have soaked up all of the information I can get my eyes on, in a bid to understand my condition. To help myself. I am full to the brim with knowledge, but I need more help!

He suggested I go on a pain management programme. I was happy to do that. Hopeful even! I know I’ve read a lot, and I am doing a lot, but a course designed to help me manage pain? Surely, I will learn something new that will prove useful to me!

I got a call just before Christmas to book an initial assessment. Someone had dropped out of the course starting in January, so if I could make an initial assessment the next day, I could start the programme on January 13^th! Of course, I jumped at the chance.

During that call, I realised that it was pretty basic stuff we were going to cover. Things I felt I knew enough about. I felt pretty deflated, but I tried to remain hopeful. If I learnt just one thing that would help me going forward, then it would be worth it! All I had to do was show up for a virtual meeting every Thursday for 90 minutes. We would receive “homework” every week prior to the call. Just 8 weeks.

Cool. Let’s go.

Pain management programme week one – Welcome and introduction

📚 Homework for this week was a five-minute video about how pain works and a quick pain quiz.

The first session was mainly people introducing themselves. It felt pretty negative and was quite upsetting for me because I could tell that the people on the course with me were where I was, in the past. It made me feel lucky that I’d got to where I am, but also sad for them, and for the me that went through that stage of grief.

I think living with IBD for so many years, plus the type of person I am puts me in a pretty unique position. I’ve done the grieving for my old life before, after my IBD diagnosis. I think that sped up the whole process and helped me reach acceptance much faster with all of the fibro stuff. I feel the need to learn, understand, and control what I can. So, the very basic information we went through was not new to me. I’ve read it. I’ve read research papers and tried to figure out ways to incorporate my learning into my life to serve me as I need them.

At the end of week one, I felt like the last 90 minutes had been pointless, boring, and depressing.

Pain management programme week two – What is pain?

📚 Homework for this week was an Alien exercise: Imagine a visiting alien who wants to understand what pain is. Describe in a few sentences. Think of one goal and a realistic timescale to achieve this goal. Read pages from the pain education guidebook.

So, I arrive for the session. Has everyone done their homework? No. The only person that has is me! So the first half of the session consists of us going through what everyone should have done in their own time, prior to the session. Literally being read to from the pain education booklet.

We go through the alien exercise. My explanation to describe pain to the alien is:

An unpleasant physical sensation, often causing negative emotions and decreased movement. The fundamental purpose of pain is to be a warning system.

Everyone else’s is not about pain in general. It’s them harping on for 10 minutes each about their pain; where it is, how it feels, and how it impacts their life.

I can feel myself getting really frustrated at this point, because:

1. That’s not what we were asked to do
2. It’s clear I am much further on in my journey than everyone else
3. This should have taken 30 seconds each, but it’s actually taken the whole second half of the session

Two people get to say what their goals are, and then the session ends.

Again, at the end of week two, I was frustrated. I felt like the last 90 minutes had been pointless, boring, and depressing.

Pain management programme week three – How does pain work?

📚 Homework for this week is some YouTube clips, a “How Pain Works” PowerPoint presentation, and more pages to read from the pain education booklet.

Has everyone done their homework? I’m sure you can guess… No, they haven’t. Again, I have, and I felt annoyed doing it because I already know everything it covers. It was mainly about the multiple factors that can influence how a person feels pain. I could have taught this class. I’m sure other participants are getting bored of me answering everything, and giving examples and suggestions at this point, but actively participating is the only thing keeping me from falling asleep. I mention a video that taught me a lot when I first started researching pain science during the call, which I sent to the moderators after.

I had started to dread Thursdays. Knowing I had my pain management meeting literally ruined my entire day, from the moment I woke up.

Pain management programme week four – Movement is key

📚 Homework is two videos; The mystery of chronic pain, The Point of the Handstand, a relaxation PowerPoint presentation, and reading two pages of the pain education booklet.

I debated not even bothering with the homework because I knew the others wouldn’t have, but I figured if I did then I could just zone out during the actual meeting.

As the title suggests, it was mainly about pacing, movement, and gradually building the amount of exercise you do being beneficial. There was also a little on relaxation and meditation.

Again, all of the materials aren’t relevant to me because I already know it all, and I am not avoiding doing things. I do yoga and walk every day and swim twice a week. I’m well versed in the benefits of relaxation and breathing techniques etc already…

Yet again, the session was mainly covering the homework people should have done. Then, one of the moderators did a quick relaxation/breathing reading. The feedback from the group was wholly negative, with a lot of “I won’t be able to do that”, and “I can’t do that because”, comments.

I’m really stressed out at this point. I swing from being mad at the other participants to feeling sorry for them. But it’s mainly anger because I’m having my time wasted every week, and having every Thursday ruined! I try to avoid stress, partly because it increases my experience of pain, so the sessions are completely counterproductive for me.

To be continued…