This week I’ll be having an invasive test under local anaesthesia and seeing two new specialists. One of the questions that I know that I’ll be asked frequently is about my level of pain.
This is where I, like many other people who have chronic conditions, really struggle.
What is the starting point?
Are we talking about the pain related to the specific issue being discussed or our pain levels generally?
When you can’t actually remember not being in pain your scale gets adjusted. Therefore the starting point is different.
Based on discussions with people who don’t suffer chronic pain, it seems that what I would typically describe as 2-3 “Slightly painful” the majority of the world would describe as 6-7 “Hurts a lot” to 8-9 “Agony”.
So when I answer 6-7 “Hurts a lot” I’m describing pain which for most would be beyond unbearable. Except, I don’t get a choice as to whether to bear it or not so my scale is different.
Sometimes healthcare professionals take this into account and use the use of painkillers as a guide to how much pain we’re in.
Unfortunately, once again in this, I am atypical. I am allergic, or intolerant, to almost all over-the-counter painkillers.
I can take Aleve occasionally but the dose I have to take to be effective is so high that I risk damaging my liver or kidney so it’s not something that I will do often.
My next option is a narcotic, or opioid. Unfortunately, narcotics tend to be habit-forming, leading to dependency and ever increasing doses needed to be effective and can cause drowsiness meaning that I wouldn’t be able to drive or work. As a result, I save the use of narcotics for what I consider extreme pain. That which I would call 10 “Unbearable”.
Does this mean that I have a high pain tolerance?
Absolutely. I live with fragile fractures on a regular basis.
I have degenerating discs in my spine.
Most of my joints are riddled with different forms of arthritis.
I have Fibromyalgia.
I have Reflex Sympathetic Dystrophy.
So how do I manage?
Usually, I manage by maintaining a fine balance between keeping busy and distracting myself from the pain and resting and treating the pain. Most of the time I do reasonably well managing the balance.
Like many pain sufferers, I’ve tried acupuncture, homeopathy, chiropractic readjustments, and diet; to name but a few alternative options. Some of which have been more effective than others.
I’ve found that heat, ice, rest, and gentle exercises such as walking, swimming and stretching activities consistently help me control the pain.
In the last few years, I’ve also learned that pacing myself, giving myself permission to relax and actually doing so, completing post-card sized adult colouring pictures, and working on my mental health through Cognitive Behavioural Therapy (CBT) and Dialectical Behavioural Therapy (DBT) also helps me.
Additionally, training Kai (my Service Dog) to place his weight on specific pressure points, works for me in the same way as acupressure, with the added advantage of his also providing heat. It might look odd at times but I can’t count the times that I’ve now been able to stay and see a concert, or show, all the way through and then drive home without paying for it the following day simply due to having Kai apply pressure and heat as discretely as possible.
For some reason, heat has always been more effective than ice for me in dealing with pain.
So I know what works for me, and I do the best that I can to manage it without the use of narcotics.
Unfortunately, in my current situation, this leaves me with a problem. How do I answer the question about my pain levels?
Am I comparing my current pain to my ‘normal pain’?
Am I using a ‘normal pain scale’ to assess the new pain that I have?
I can actually feel the impact of the steroids that I’ve been on for the last couple of months wane during the day. As we wean my steroid dose my pain levels are increasing daily. How do I explain that?
How do I explain that it’s not that I’m stoic but rather that I refuse to be limited any more than I absolutely have to?
Pain is relative.
For me, pain is normal.
So what is my pain relative to?
How do I answer the question when asked to assess my level of pain?
How do I explain that while I might be smiling and joking when I answer 12, I’m not really joking. It’s not really a laughing matter.
It’s just that my pain is beyond unbearable but I’ve found ways to bear it. I don’t have a choice.
If I could take a pill that takes the pain away with none of the side effects of narcotics, would I? In a heartbeat.
Will I get to the point where I give in and resort to the regular use of narcotics? Yes. I probably will. Though given the choice of narcotics or using a wheelchair, I’m not sure which one I’d choose.
Probably the wheelchair as I hate the brain fog caused by narcotics. That’s a decision I hope to not need to make for many more years, but some days it seems like a decision that is imminent.
Regardless, this week I will have to answer the question repeatedly regarding my pain levels and I’m still no clearer on how to answer that now then when I starting thinking this through tonight.
All pain is relative. Relative to what is still unanswered for me.
At the end of the day, does it matter?
I’m not sure.
Pain is pain!
Perhaps the scale needs to be simplified to just two points for those of us with chronic conditions:
- Pain that we’re willing to bear with our current regimes, and
- Pain that we need new help with.
It would certainly give me a lot less cause for thought if it was just that simple!