Avoiding PEM by pacing my way through Pain Clinic
PF gives her experience of an ME/CFS friendly way of attending a Pain Clinic in south Wales.
As my referral to the Pain Clinic was made during Covid lockdown I was initially offered a Consultation over the phone, instead of having to physically go to the hospital.
I had a lengthy constructive consultation with a pain management consultant who asked a lot of questions and actively listened to what I said. (This has not always happened to me in the past!) As I have other health issues, including ME/CFS, he suggested the best way forward would be to have a support person to help guide me through their Pain Management program.
With an entirely open mind, I agreed to participate fully, in the hope I’d receive an element of helpfulness, as the last 14 years have been a struggle with the numerous chaotic difficulties that come with ME/CFS.
I was desperate for anything to help me help myself and manage my pain, so I gladly accepted a combination of telephone calls with downloadable mini segments of modules relating to pain management.
I struggle with cognitive and physical difficulties, so I asked to have bi-weekly sessions at a slower pace, with smaller amounts of information. Thankfully they agreed. This helped me massively as I was able to spend as time as much as I needed to repeat the sessions. A link would arrive by email and when I opened it a calm voice would speak, backed up by text and diagrams, and ending with questions.
I could take time to absorb what was being communicated and work out how it related to me. To reassure me and help my developing understanding I had an hour’s one-to-one telephone session with my support person, who was the same person throughout. This relationship was very helpful.
Even when I felt I knew about a topic, I still spent time on it. You can choose not to do this, but personally I don’t believe in complaining about something not being applicable or helpful to me, if I was not willing to put in the effort. I believed I would only get out what I was willing to put in.
Pain clinic is not a magic bullet of medication(s) or a pain patch or injections
⇒ The first segment started by informing me of different types of pain. Another followed up the impact pain has on my body. Next I learned about the types of medications and what their contribution is towards pain management.
The first big personal discovery was that there was a slow release version of the drug I took – Tramadol – which might be better for me. The Pain Clinic wrote to my GP, who agreed to prescribe it and although it doesn’t take away pain, it assists me in having more control of my pain, balancing it and avoiding spikes and dips. It equates to a better quality of life for me.
Depending on the outcome of my bi-weekly telephone conversation my support person gave me several links to access. I found I was able to listen multiple times, as at first due to my cognitive difficulties it felt as though I was listening to gobble di gook. After 48 hours of active listening, I was able to start processing the information and come to some understanding of what was being said.
By the beginning of the following week I was able to then think more clearly as to how this information may apply to me.
By the time a new support session was due I was able to voice what I had learned and clarify that I had understood correctly, then discuss how it might be applicable to my life. Gradually I realised I was developing a better understanding of what’s happening within my body and how I may be able to find a better way to manage my pain.
⇒ Another major message of the course was that although pain might never go away, we can change our focus and not waste energy trying to remove it. By understanding how our body filters pain, how the internal stimuli system (my body’s auto-senses) processes pain and the impact external stimuli elements also have on my pain I can see how I can perceive it differently and find ways to soften the impact of it. Pain has many facets and both the psychology and physiology of pain can influence and impact how we experience pain.
⇒ Having a clear plan was also encouraged, accepting that you might have to change the way you do things, to be achieved in smaller doable steps was another lesson. If we step back and ask whether the tasks we couldn’t achieve before might in fact be achievable by modifying our actions and expectations. By using light tools I can still garden and see seedlings spring into life rather than focus on negativity & pain.
⇒ Finding ways of self soothing and calming were encouraged. To stop and take a breath. For me this has meant online art classes which both help with pain management and give me a social experience.
⇒ Asking for help from others can often lead to self criticism. It is too easy to feel guilty or sad, but when we can, and explain to them exactly how they could help, we can find ourselves more able to do something. I was challenged to be kind to myself but also to ask for help in a way that doesn’t require a big confession or lesson in what ME/CFS is. People might not understand the complexities of our health condition, but can still respond to our request.
⇒ To develop an inner voice of calmness we were encouraged to e.g. focus on the positives each day and accept things might not happen as we wished. Calmly developing a plan B helps, if plan A cannot happen. If remaining calm means resting then I can give myself the gift of 
resting without personal recriminations, putting things into perspective and making plans for another time in maybe smaller steps, with adaptable changes if need be, and being kind to myself.
We were given breathing exercises and other methods of relaxation to aid rest or sleep, though we don’t necessarily need to sleep. Just closing our eyes, resting in peace in a darkened quiet place often helps me. It allows me to decompress from my body/brain being overloaded and from being excluded from my community due to my illness, as the charcoal sketch of my unworn shoes illustrate.
To sum up…
All the many downloadable sessions – I’ve just mentioned a few – were individually helpful but eventually they all linked up to complete a bigger picture, like a jigsaw puzzle. They gave me a set of tools to develop my understanding of many aspects of life as I journey through time.
This may sound quite complex and even condescending, as though I haven’t lived life or know how to deal with any of the stuff that I have to navigate through. It is not. Yes I may have had knowledge of some things but pain clinic gradually, on a weekly basis, gave me a better understanding of many more things and I can still access that information today, if I wish.
There were no physical activities as this was understood not to be helpful for ME/CFS. The flexible way the information was delivered and the fact they allowed me to take it at my own pace, made the process so much more helpful than I would have thought was possible.
[Due to irritating cognitive problems I have relied on Jan’s help to edit my experiences!] PF
#WorldMEday #LearnFromME
outlines what ME/CFS is and is not
Maybe you’ve got an idea that it’s about being tired all the time. That would be understandable because some people call it Chronic Fatigue Syndrome (‘CFS’ for short), a name that is despised by most of us who find it so understates and misrepresents our lived experience of the illness.
Some prefer the term Post-Exertional Symptom Exacerbation (PESE) , since, as well as an all-pervading and intense feeling of unwellness (‘malaise’), all the person’s symptoms can intensify.
“I feel like I’ve got heavy weights attached to my body…
“One day, someone actually asked me if I was drunk, because as I get worse, my speech becomes impaired and I lose my balance and bump into things…
“My whole body just feels like its slowing down, like it’s running out of battery… and the more I try to push against that, the worse my symptoms become…
It is when symptoms become worse after:
By sharing your story, you can help raise awareness of this disease and the impact it has on your life, and that of millions of others around the world.
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