Let's Talk About Pain...

Greetings,

Be warned this one is coming completely off the top of my head, so it is likely going to be a rambling discussion of subjects such as Pain Scales and other such things. Further, there will be other such topics of discussion when it comes to pain present here. Quite frankly, you're just going to have to read along to find out. If you want something substantially more structured, and a hell of a lot longer, have a read of the document I wrote. This one does not appear on my Patreon site because I wanted everyone to read it. I might put it up there as a public post, just to get a larger audience to read it.

Like the "Disability Conversation," the "Pain Conversation" makes people uncomfortable. In some instances it is because it results in the infamous "pain comparison" i.e., my pain is worse than yours, or I have experienced worse pain than you have. This comparison of pain is often a point-scoring exercise, rather than an exercise in understanding which is what is needed in a conversation about pain. If we can understand pain we can move toward dealing with pain.

Rather than a "pain comparison," there needs to be empathy between the people in the conversation, to try and understand the pain that the other experiences. The direction of such a conversation should be directed toward ways the pain can be dealt with, how the pain is removed, or how it is shifted so the person can get on with living. This is the important part, ensuring pain does not control our lives, that we don't just exist, that we live.

The Pain Scale in its classic form is a set of numbers from 0 - 10 where each represents the level of pain an individual happens to be in at the time. For chronic pain sufferers this scale is odd, strange even, as this mythical 0, often does not exist for them unless they are unconscious or anesthetised, or in some similar condition where the brain is inactive. Where there is chronic pain, the Pain Scale shifts, it does not shorten, it shifts, or can shift.

If an individual has "background" i.e., permanent pain, at 3, this is their new 0, therefore the 10 in their scale can be 3 steps above 10, and sometimes is due to being "used to pain." In other cases it works in a different way where the scale simply gets shorter. The other numbers are cut off, 3 is the new 0, and 7 is the new 10, because their pain has increased and their ability to cope has reduced.

In my case my Pain Scale is simply f*cked-up. Then again, I have fibromyalgia (FM), so most of my readers should not be surprised if they have been reading my posts. I have background pain all of the time, the level of which floats, depending on the day, weather, and activity. The only time I have 0 level of pain is when I am unconscious, anesthetised, or asleep (with VPAP on and night-time drugs taken). Pain usually wakes me up in the morning.

How do I deal with my "life of pain" as some writer put it? Depends. Some of the pain I can move to the back of my thoughts. I just tell it to go away because I have things to do, I am simply too busy to be in pain. Other times, I save up my "spoons" and blow the lot of them on activities I love, knowing that I am going to pay for the experience. 

Some will claim this is a "boom and bust" lifestyle and it is not good for me. My response is that I am a quality of life, not a quantity of life, sort of guy. I am going to live my life. I am not going to spend it restricting myself because an activity might hurt, or because I know it does, even though I enjoy it.

There will be those who will say, that this is not your way. No, it isn't. This is my way of living and having a life. I live and I do the things that I love. I contribute to society where I can through my activities and through my involvement with other people. I do my best to not let pain get in the way of these activities. 

I will not be bound. I will not be restricted. I will find ways and means. This is my way. I find each struggle and obstacle, not as a hindrance, but as a challenge laid before me. They are a chance for me to overcome these obstacles and struggles, but they are also a chance for me to overcome the greatest challenger of my life, myself. Pain is just another part of me that is a challenge to defeat. Look forward, not backward; look toward the life that is before you. Love your life. AMOR FATI - love your fate. 

Of interest, I went to the Pain Management Clinic (or whatever they want to call themselves this time), I saw the doctor and talked about my medications and so forth. She changed one of my medications, and my GP and I are discussing whether or not we will change another. I saw their psychologist, and her response was you are doing all that we teach, "What are you doing here?" I saw their physiotherapist and told her about what I do, she also said I was doing what I needed, "What are you doing here?" They both reported back to the doctor, and I was shortly thereafter discharged from the clinic over the phone... might have helped me dropping that 88-page monster I had previously indicated. I believe that my understanding of pain is quite complete, but I am always learning.

Cheers,

Henry.

How Do You Explain Pain?

Greetings,

We find it difficult to explain our pain to other people when it is acute, there are various metaphors  and similes which are used to describe the pain which is being felt so that the person who is being spoken to can understand what sort of pain it is. Most often this is for health-care professionals, but sometimes it is for friends and others as well. In the case of chronic pain it becomes even more difficult to describe and also scale because it is constant. Scales have been presented to codify some of this into some sort of idea of what the feeling is but they often do not really do the job.

The Issue With Chronic Pain

The issue with chronic pain is that it is always there. This means that for a person with chronic pain, their "normal" means that there is some pain occurring all of the time. The pain may be background pain so it is ignore-able but it is still present. It also means that the person with chronic pain gets used to being in pain and ignoring it so that they can function. The concept of not being in pain simply just does not exist for many of these people, it is a dream which is rarely realised.

The Pain Scale

So, many of us have been to the hospital or been to a health-care professional and been asked to rank our pain on a scale of 0 to 10, where zero is no pain and 10 is the worst pain you could experience. The problem with this scale is that it is relative to the individual's experience. So it really is a sliding scale at both ends.

"10"

Many of us have not had the experience of what a "10" is so they have no idea what a "10" is. On the other side is those who the "10" moves because they have faced what they thought was a "10" lived through it, realised it really was not that bad, and thus the scale as slid further up. Further as their life goes on and as they experience more this end of the scale can slide further and further up as they get used to experiencing pain.

"0"

The "0" end of the scale is what most people experience most of the time. They walk around with no issues at all no pain at all. Or at least this is what the scale would like us to believe. It is a nice thought that there are some people out there who can walk around in their everyday life with no pain, it truly is.

For those with chronic pain, the "0" is a dream which is only really met in unconsciousness or when there is enough painkillers taken that the individual mostly does not function particularly well. The result is that most people with chronic pain do not experience "0" very often. They live with as low a number as they can at which they can operate with. Sometimes these numbers are not particularly low.

Specificity and Functionality

There are two questions which are not answered by the Pain Scale as it sits on its own. They are the questions of "specificity" and "functionality". To put it in another way, the pain scale is not specific to an area of the body it is general, and it does not take into account the functional level of the individual who is describing the pain. These two elements are important to the greater understanding of the individual's perception of their pain.

A person may have a general Pain Scale of "3" but in their knees they may have a Pain Scale of "6" because they have been walking for an extended period of time, and they may have a Pain Scale of "7" in their head because they have a migraine building. This is being specific about where the individual is feeling pain and the levels. In this case the specificity is important because there are individual issues that need to be dealt with rather than a general pain level that is a problem.

Then there is the examination of functionality, one individual may be able to operate with a Pain Scale of "7" overall because it is a general pain level felt. Whereas another may not be functional with the same Pain Scale level because it is isolated to their head so that they cannot have too much light without pain. Likewise a person may suffer functionality issues if they have a similar Pain Scale in one of their arms, hands or legs, due to the restriction in mobility. This can also depend on the individual's willpower and how used to pain they are.

Used to Pain

The problem with chronic pain is that the individual gets used to pain so their "1" could possibly be equivalent to another person's "4" or even higher. It will obviously not be "0" as explained before. This is because the individual has gotten used to the pain at this level for so long that it can be shifted to the back of their mind so that they are still functional. It does not mean it does not affect them.

The problem with getting used to pain is that people with chronic pain will also not realise that they are in pain until they are asked by someone else. It is because they have trained themselves so well to put the feelings of the pain toward the back of their mind so that they can get on with what they are doing that they don't notice the pain anymore. This can lead to issues of its own.

The other issue with being used to pain is that it becomes a permanent feeling that becomes embedded. This becomes the individual's "normal" so much so that the feeling of no pain actually feels wrong. The individual can also get used to taking medication to subdue their pain enough that they can function. The issue becomes that the body will eventually get used to the medications which are being given and even reliant upon them. The result will be bigger and bigger doses until the medication  no longer has any effect. It is the same effect as being used to the pain, just in the other direction.

Personal Explanations

For myself I have fibromyalgia (FM), hence the name of this blog, and also sarcoidosis, both of which cause a level of widespread pain. I also have a laundry list of various other ailments which I have acquired through my rather eventful life. I have lived and paid for it, and I have no regrets. The result is that I have chronic pain which is present throughout my body, though it tends to be isolated in various parts of my body.

In regard to painkillers, I don't actually like taking them unless I actually need them. I have to actually be told to go and have additional medication when I need it. The issue that I have is that the pain medication often removes a level of functionality which I do not appreciate, so I put up with the pain. I do not like not being able to think, which is the reason why anything which has this sort of side-effect gets taken just before I go to bed.

I rate my Pain Scale at "4 - 6" depending on the day, as about my "normal". Mostly at anything which is below about "5" I can mostly ignore, so my Pain Scale is really quite off. This means that my "4" is my "1", you can do the math and figure out what the top end is because I have no idea. People have rated some of the things that I have been through as some of the worst. I think I have hit a "9" at least once, not sure about a "10". I am still unsure.

For the most part people rate my Pain Scale by how grumpy I get. It is usually a good scale of how I am doing as I get rather short with people and things when I am in pain. I don't lose my temper I just get grumpy. Indeed I get told to go take medication because of my level of grumpiness if there is no reason for it apparent, usually I get asked first.

So my Pain Scale could be said be "Happy" - "Civilised" - "Grumpy" Or something like that. After the "Grumpy" stage the pain levels make me particularly anti-social. Those levels are the ones where I don't like being around people at all. It is difficult to explain what it is like past the "Grumpy" stage, it really is. I am certainly not functional at those levels. Everything takes much more effort.

I hope that this explanation has given some insight into how pain is explained and how it can be explained more fully. I think that it is necessary that each person understand that the individual is at the centre here and that pain is an individual thing as much as people want to codify it. Numbers are useful to give a general idea of how things are, but they are only part of the story. There needs to be greater understanding of the individual and their pain. This is where empathy is of vital importance.

Cheers,

Henry.