Pain... It's All in Your Mind

 Greetings,

My last post was about COVID vaccines and my personal journey through having the vaccine. I will be continuing to have the vaccines, of all kinds, not just the COVID ones because they are good for protecting the body, regardless of their side-effects, and that was some time ago. I simply have not had anything to write about since then, nothing which I thought my readers of this blog would find helpful or useful. Today, I have.

How many times have you been told that your fibromyalgia (FM) is all in your mind? How many times have you been told that your chronic pain was all in your mind? In these instances the individuals were using the statement to pass the buck, to place the blame elsewhere or simply discredit feelings and sensations that you knew you were actually having. I have news... in a way they were right.

Pain does come from the mind, but it does not make it any less real. If you are having problems grasping this concept, I recommend watching any one of the many videos on YouTube by Professor Lorimer Moseley. HERE is one to get you started. He is an Australian who studies pain and its effects on individuals, and how it works, recognised internationally for his work. His research is revealing, and it is most useful to individuals who live with pain every day of their lives. Once you have had a listen to Professor Moseley, I would encourage you to read on and see what this revelation has done for me...

If my pain comes from my mind, then I am in partly responsible for the outcomes of this sensation. This is the case because I have active control of my mind, I am the person who decides what I do with my mind and what I think about. Yes, we all get distracted and we all get led off on our little adventures, but if you can control your mind, you can control your pain. Let me say that again, if you can control your mind, you can control your pain.

This is a skill and like any other skill it takes practise. You can practise through simple things like remaining on a particular topic and not being side-tract when you are thinking about a thing. You can practise by focusing on each individual part of your body and feeling each individual part of your body and then pushing them away. These are practising actions of mindfulness, not in the Buddhist, Dalai Lama, monkish sort of way but in an active form.

If I am actively doing something that I enjoy, my pain levels reduce a lot. I do not feel the pain, because my mind has been taken elsewhere, I am focused on something else. The more that we can find the triggers to these removing our thought patterns away from the pain that we are feeling, the less pain that we will feel. Of course, this works for me. 

I find if I focus on my pain, I end up in a spiral downward which just ends up in more pain. If I can stop the spiral, by distracting myself from the pain, by doing something active, or even something else that I have to focus on, the pain reduces and the spiral doesn't get a chance to start.

Why would I bother to seek out methods such as these when there are drugs available to dull my pain? I have more of a fear of drug-dependency than I do of pain. I would rather save the drugs for some time when I really need them than use them for chronic pain conditions. I would also rather have pain than have the fog associated with having enough drugs in my system to dull my pain. I have been here before and I did not like it at all. I don't want to be hooked on that sensation a person gets when the drugs hit their system. I would rather have the pain and feel alive than be pain-free and in some drugged up, semi-comatose, unable to think, state.

The problem is that our bodies get used to the presence of drugs, so they get dependent on their presence, and they get tolerant of them, so they have to be increased. I have topped out one of mine, so my doctor has had to move on to another one which will work with the one that I am using. This is the reason that I am doing my best to find other ways of dealing with my pain. Activity helps, especially if it is an activity that you enjoy, because you will want to go out and do it. Research, and work on your mind helps, but it is all hard work. The alternative, I believe, is worse.

Cheers,

Henry.

... But That's Not Me

 Greetings,

Funny thing, this started as a Facebook (FB) post, but it grew into something more worthy of a post on my blog, and I have posted so infrequently on this blog that I decided that it was time that I started again, at least on a more semi-regular basis. Before I get to the nitty-gritty of the current situation, I had my second Pfizer shot, with much the same resulting side-effects as the last, i.e. a week-long flare of my fibromyalgia (FM) symptoms. You can read the previous post if you want details. I still think it is worth it; COVID and the potential long-term side-effects would be much worse. Anyway, enough of that stuff, it's not actually why I am here today.

Like this blog I occasionally post some things on FB to raise awareness about FM, these are primarily images which I share from sites across FB. These are not cries for sympathy, I don't want sympathy it does me no good whatsoever. Sympathy is a salve for the individual who gives it. It makes them feel better. Sure it makes the other person feel better for a little while, but it is like giving painkillers to fix a broken spine. They take the pain away briefly, but the spine is still broken; and the painkillers become addictive and begin losing their effect after a while.

Empathy is a little more useful, though I find it difficult to understand how a person who does not have FM can empathise with a person who does. "Empathy is the capacity to understand or feel what another person is experiencing from within their frame of reference, that is, the capacity to place oneself in another's position." as defined by Wikipedia. How can a person "feel" what the person with FM feels every day, what they experience? Empathy is a long stretch in my opinion. Understanding, now that is a possibility, even if it is described through the particular lens of the individual, that will do nicely. Understand that we have our good days and our bad days. Understand that the symptoms are annoyingly random. Understand that it is like a roulette wheel as to whether tomorrow will be a good day or not. Further, understand that people react differently.

Returning to my original position, I post the images because they often do a good job explaining some of what I experience, however I dislike reading many of the comments because they do not relate to me. It's one of the reasons that I have not joined a support group in the decades since I was diagnosed. I have run into people who have FM and there tends to be two types. 

The first type allows their condition to rule their lives. It is the explanation for the reason why they don't do things. FM is the reason they don't or can't go out and do things. FM has ruined their lives because their body will not allow them to do things, because it hurts. They do things and it causes them pain so they don't do them anymore. They focus on the negative.

The second type understands the effect the condition has had on their lives, but pushes against those boundaries every chance they get. They go out and do things regardless of their condition; in some cases deliberately in spite of their condition. They push they pain to one side so they can go out and do things, and find that while they are doing them they don't notice the pain. They push their limits, and pay for it, and then go out and push their limits again, and again. 

The problem is that most of the responses to the images that I find are from the first type, and I am certainly from the second type. I want to find out what I can do, and keep on doing it. I don't want the spiral of ever-reducing capacity. I want to get out there and keep doing things.

I thought about responding to the comments, to show these people that there is hope, but you have to find it within yourselves rather than go looking for it elsewhere. I thought about arguing it from a philosophical point of view, pointing them toward the Stoics for a better way to live. The Roman emperor, and Stoic, Marcus Aurelius suffered from chronic illness. His Meditations as we know it now has passages about pain and illness, because he suffered and responded. I thought about even pointing them toward Nietzsche who also suffered from chronic illness throughout his life, pointing them toward his "will to power", but I wonder what the responses would be. 

Instead, I write to you, my dear reader, explaining how these people are not me. They do not represent everyone with FM; we have not all lost hope; some of us do not live our lives in little balls of pain shutting the world out complaining about all the pain, we have lives to live. The only way to change your life is for you to change your life. Take a different perspective. Change your thought patterns. Don't wait for the miracle cure that may or may not happen. This is your life, go out and live it.

Cheers,

Henry.

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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.

You Know You Have Chronic Pain When...

Greetings,

This is one of those "list" things that I am going to come back and add to as I come up with more of them. I may or may not date them as I go. So far the list looks like this...

You know you have Chronic Pain when:

1) Your medication never decreases it only increases.
2) Your pain medication collection rivals some drug dealers.
3) Your pain medication makes drugs off the street look soft.
4) When the doctor asks you to colour in the figure to show where it hurts, you circle it.
5) You giggle quietly under your breath when Panadol and Nurofen ads talk about "stong pain".
6) Your day is measured in milligrams rather than minutes.
7) The difference between a "good" day and a "bad" day is your level of consciousness.
8) The choice between one effective painkiller and another is how long you will be unconscious for.
9) A "zero pain" day is usually a "zero consciousness" day.
10) What you will do today, depends on how much you can afford to pay for it tomorrow.

Cheers,

Henry.

New Amazing Diet... Lose 4kg in 1 week...

Greetings,

No, I am not going to try and sell you anything, but I bet it got your attention. One thing is true, however, I have lost 4kg in a week, and I can tell you it was not voluntary. I have been having some issues with my lower abdomen, went to the doctor found out that I had a "torted epiploic appendage". Yup, a little bit of my large intestine got twisted. In order to relive this you get put on a liquid diet, it gives the bowels a rest and allows the body to figure itself out. Once I could put up with but this twice around business is ridiculous. More lower abdominal pain, another liquid diet for a week. Oh, and it seems MS Contin does not agree with me anymore, another pain-killer off my list, side-effect of that was worse than the pain itself.

In other news one week ago today I had a liver biopsy. Essentially get a large needle push it through the chest wall, hit the liver get a sample and your done, except for the having to lay on your back for six hours. Oh, yeah, and the screaming agony once the sedative and pain-killers wear off. Needless to say this one woke the FM up for a big visit and has been telling me about it ever since. I am hoping to be back to my usual self in a week.

Oops, I forgot, my latest dose of lower abdominal pain piggy-backed itself on the liver biopsy, just for some added pain, and I got the results for the biopsy... sarcoid in the liver it would seem. Not happy. Hopefully more news to hand later.

On the more "good news" side of things the aberrations in my kidney functions seem to have settled. I officially have kidneys that work at 75% capacity. Not seeing the specialist there for a year, unless things go "funny" again with them. The bone doctor says that the osteoporosis is on the retreat and he does not want to see me for two years, which is excellent.

Well, things sure have not been boring around here the past month or so. I am hoping to keep more up to date, though I do not like my chances. I will when I can. Anyway, I am hoping that you have had a less exciting time than I have, at least in the same manner.

Cheers,

Henry.

Sleep time... What?

Greetings,

Well, I figured I should get around to writing this one sooner rather than later before it passed my mind. It is on that immortal subject of sleep. Unlike my usual posts which are usually organised by thought and so forth this one will not. I also do not guarantee that it is not going to be a lot of rambling.

Anyhow....

For the most part and "usually", if there is such a thing, I get tired, I take my evening medication and I go to bed. Unfortunately this is not always the case. I would like to cite the last couple of days as a prime example. I have been getting up at my usual time, doing what I do in a day. Then it comes to midnight, my average and usual bedtime, and I am not tired. On a usual day I am usually trying to stay awake, past couple of days it has been quite a bit of the opposite.

I, as a rule, do not like having to take medication in order to get to sleep. I did this for a while and my I got a little dependent on them. As I said, usually I get tired, I take my medication and I go to bed. More recently it has been take medication to make me tired and then go to bed, which is not the way that I like it to work. Now I do apologise to any of my readers who are familiar with the concept of insomnia, especially where it is associated with fibromyalgia. For me this is not a general thing that happens.

Only times when I have trouble getting to sleep is: when I have slept during the day, for an extended period of time; got something in my subconscious that is bugging me; I am particularly concerned about something in my life; had too much caffeine (yeah right, ask anyone who knows me well about this one); or the weather is so bad that I am in pain enough that I cannot sleep without pain-killers, another one of my pet-hates. Sure the weather has been really crappy of late and I have been in a bit of pain, but no more than my "usual".

So, here am I sitting, for the first time actually writing on the subject which is actually going wrong for me currently. My usual is to leave it until I can compose my thoughts properly and then write it "properly". Cold weather usually cramps my hands and causes me issues, did so this morning, it was actually my first symptom of FM that I got. Of course my original doctor put it off to "growing pains" or "being too tall and thin" or some other "easily-explainable" or "untreatable, besides by anti-inflammatories" reason. Anyway back on subject-ish. One of the reasons for removing the "regularity" from this blog was for a better insight into what is going on "now" for me. Well, just for a change it is happening.

My issue at hand is that I should be tired enough that I want to take my medications and go to bed. But I am not so I am not going to. This time, I think I am actually going to stay awake and see just how long it will actually take me to feel like sleeping. I would not be surprised if I end up doing some research or end up on Facebook. I am sure that there must be someone awake in the world wanting a chat.

Anyway, I do not know if I will update this blog and keep you all filled in on this. I will make no guarantees on that one. So I will see how things go. You never know you may get another out of me quite soon. Or at least sooner than I would usually.

Cheers,

Henry.

Pain-killers... Oh, How I Loathe Thee.

Greetings,

I need to be a little specific with this topic, and I suspect that this is going to be a little shorter than my usual post. I am going to talk about pain-killers. More to the point I am going to talk about the reasons why I am so disinclined to take them if I can find any other way in which to solve a pain issue. This is probably going to seem a little odd to some.

So, you have a headache. Straight to the medicine cabinet, pop two pills, be they aspirin or paracetamol, and everything is good, right? For most people I would say that this is how things work. So I had a headache last night, with neck pain and back pain. According to the description above it should have been simple, follow the instructions have the pain-killers and be done with it, right? In my case not so easy. This is more than a simple choice to make, in fact it can be quite a bit more complex.

First of all, due to being on methotrexate for sarcoidosis (which is on the retreat I am glad to say) I cannot take aspirin due to the blood-thinning agents in both medications, also I cannot take paracetamol due to the liver issues associated with the combinations. This effectively takes out things like panadol, panadol forte, aspalgin, mersyndol and mersyndol forte. Pretty much all the over the counter stuff is gone, along with some which you can need a prescription for.

What does this leave? This leaves wonderful things like MS Contin, which is a morphine derivative, and Tramadol which is a synthetic drug designed to stop the pain signals to the brain. Or at least these are the two wonderful drugs I have been prescribed in addition to my usual drugs taken for FM. The Tramadol is the main one, but in order to take this I have to make choices.

I don't like taking the MS Contin for obvious reasons, however I can take that whenever I need it as it has no real reactions besides the above to anything else I am on. The Tramadol on the other hand reacts with the anti-depressant that I am on in the evening, so I need to make a choice of one or the other. Not a great choice I can tell you.

In the taking of either of the drugs, I know for a fact that I am going to be have "brain fuzz" for at least 24 hours if not longer. This is like the good old FM fog, i.e. can't think straight, lose track of things and all those wonderful symptoms. The big reason why I really dislike taking the pain-killers. Pain goes away, leaves the disgusting fuzz behind. For the most part I will do anything in order to not take either of them. This includes putting up with the pain, having a warm shower (which helps a surprising amount), going to bed early if it is in the evening (and sometimes during the day, not all that often if I can help it), or just trying not to think about it and working around it. 

Of course the other big reason why I do not like taking the pain-killers is because I do not want to end up dependent and upping the doses as my body gets used to them. I do not feel like being dependent on "big-dose" pain-killers at all. The concept of being like this and dependent on them is something that I will avoid as best I can, and if that means I go without, well so be it. Needless to say, I keep my pain levels under reasonable control as best I can, and will put up with the pain for the most part until I can't. Pain-killers for me are a last resort.

Cheers,

Henry.