When you were diagnosed with chronic pain what were your treatment expectations, if any?
And what did the doctor or specialist imply the treatment expectations were?
It is strange with some pain. With fibromyalgia my pain, back in the day, was mostly ignored and not treated or managed until I was a lot older. The expectation was: deal with it.
With chronic migraine treatment it was always this ‘I have no idea why this treatment is not yielding spectacular results in you.’ Even though the very best top quality preventative at the time only could have a 50% reduction (A lot of preventatives were not of that grade) and very few people ever saw that result. I definitely never did.
So what were my expectations early on this pain management?
Well, they were certainly Something over Nothing, I can tell you that. I was aware pain management wasn’t pain elimination. But I did expect some sort of effort on my doctors part. Give or take a few decades and they put some effort in.
My disillusionment with treatment came the day I was diagnosed with fibromyalgia. He said to me I was ‘too young for treatment’ and suggested nothing else. And off I went to try and figure things out myself for the next decade. So, yeah, bit cynical about that.
I mean, some of the things I learned were what jobs I could not do at all. And how to pace- the hard way. And how to burn out at a job. All really fun lessons.
Before starting a patient on a pain management regimen, it is important for clinicians to understand that most pain management strategies — from opioids to yoga — are likely to yield only around a 30% to 60% reduction in pain. “What do your patients want when they come in?” Cosio said. “They want 100% [reduction]. Education needs to occur to manage expectations.”Helio.com
This dude is clearly not talking about patients like me. We wait so long for any pain management at all that our expectations of any doctor and any specialist are exceptionally low. I expect nothing and usually I get pretty close to that actually.
I go see them. They do their spiel. I nod. I agree. I do exactly what they tell me to do. Nothing changes. I move on to the next one.
What I Want and what I Expect are entirely different things. I want a treatment plan that is comprehensive and considers all sorts of factors. But you know, that would be too much effort for them. So try this pill and if that doesn’t work try this other pill on Top of that other pill.
What sort of treatment?
Cosio covered five categories of pharmacotherapeutic pain relief: NSAIDs, anticonvulsants, antidepressants, topical agents and muscle relaxants.Helio.com
No wonder he wants his expectations of pain patients to be low. None of that went far for me. Didn’t for me anyway. But NSAIDs sure did give me a lot of pain and a permanent intolerance. So that was a fun bonus. But the rest of them- well I have been on so many and combos of so many. And not much of any response to them. But a crapton of side effects, definitely that for sure. So if the rate of pain reduction is supposed to be 30-60%? That would be a seriously optimistic expectation for me.
The fact is medication really isn’t going to get me to that number. And the only thing that really helped me because medication never did was all the other aspects of pain management. That every doctor doesn’t bother with but eventually you learn yourself or at a pain clinic. You can see that sort of thing in this pdf: Pain Self-Management strategies.
And all that isn’t so much about pain reduction as it is managing the emotional fallout and CBT. And helping you with your perception of pain and how to live with the pain you inevitably have. Also the need in our lives to socialize and have distractions (interests, activities, hobbies). To do any small thing we can to help with our diet. And any small bit we can do for exercise, movement, stretching. A most important of all Pacing.
And I find these help because I find 99% of the responsibility for chronic pain treatment and management is the responsibility of the patient and not the doctor. Not because it should be but because that is the way it is in reality. So if we don’t find these things and try them out and hope they in some small fraction improve our quality of life then we sure as hell are not going to get that help from our medical professionals. They have no time for us.
I find learning about all these different strategies and trying out which ones are a good fit for me and help me, in any way at all, do give me some semblance of control back. You want to progress forward in some sense to a goal. In the effort to improve overall well-being, or quality of life, or life satisfaction. In many ways, my expectation is that there is very little control over the actual pain itself but there is at least some wiggle room over my emotional and mental response to pain and how I cope with it.
What I would like to see more off is doctors and medical professionals assisting us in developing All the strategies we need to cope with chronic pain long term- from the moment it starts. Not us having to figure this all out on our own by trial and error over a decade or two which really sucks.
And all of that is trying to figure out how I can have some small slices of life with pain because medications don’t seem to Meet Any Expectations. That doesn’t mean occasionally some medications yield some results. Like a migraine preventative that doesn’t help with frequency but does with intensity. Or helps minutely with frequency but well you take what you can get. Just that I do not expect that much from them at this point. And the medications that do work, you can’t take, so there is also that fact (addictive, causes dependency, causes rebound headaches… whatever random reason they have). So I will do whatever I can do build resiliency and cope with the existing pain I have to live with.