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.

Relay for Life

Greetings,

My Purple Challenge (https://alifewithfibromyalgia.blogspot.com/2019/04/henrys-purple-challenge.html) was based upon missing last year's Relay for Life. This year I have joined my friends in participating in this most worthy cause. My personal page can be found here (https://secure.fundraising.cancer.org.au/site/TR/RelayforLife/CCQLD?px=1965468&pg=personal&fr_id=5904). The question that really needs to be asked is why I would be doing this to myself.

The first reason for this is because I believe in the cause. Both of my grand-parents on my mother's side, my mother, and my primary fencing master all passed away from cancer. My father had cancer and beat it. I have also got more than one friend who has had cancer and beaten it. Needless to say that this is a disease that has affected my life almost as much as fibromyalgia has. What is really annoying is that my fencing master passed away from pancreatic cancer which they found a cure for a month after his death. This is the reason that more money needs to go to research so that tragedies like this can stop.

Secondly, it is a challenge for myself to actually do the Relay itself. Rather than walking around the course like most other people will be my team, Brisbane HEMA Clubs, will be fencing in some capacity for the entire 15 hours. In my case it will be a challenge because it means that I will be fencing on and off throughout this time, and I have no idea how my fibromyalgia is going to react. More than likely I am going to pay for my exertions later on, and in a big way.

Finally, the Cancer Council is an organisation which I like to donate to because they do great work. I encourage you to assist me by going to the link to my personal page and making a donation. This donation will assist me reach my modest target of $200. It would be really great if I could exceed this target well and before the Relay. Just know that your donation is going to a worthy cause. I have almost no doubt that I will come up with some scheme like the Purple Challenge to assist with my fundraising efforts as well.

Cheers,

Henry.

Henry's Purple Challenge

Greetings,

I am going to be rather busy over the month of May, why? A small project to raise awareness about fibromyalgia (FM) and also to raise some money for a local charity which I like to support in the process. It is also an excuse for me to get to fence a lot of people and do some good in the process, not only for myself but others as well. See you in May.

Cheers,

Henry.

Henry's Purple Challenge

Fibromyalgia the condition which I have is identified by the purple charity ribbon, hence the name of this challenge being the “Purple Challenge”. It also happens to be the colour for sarcoidosis as well. The aim of this challenge is primarily to raise awareness of people with fibromyalgia and other such similar conditions, and raise some money for charity along the way.

The primary intent of the challenge is to fight $1 bouts for the entire month against any combatant. Obviously these combatants will have to have been suitably authorised in rapier combat should they be SCA members, and suitably qualified by an instructor from other recognised Historical European Martial Arts schools. These combats will take place wherever and whenever I am at an event or training session by request of the individual who is making the donation. Obviously, sufficient time must be left in the event or training session for the bout to be completed. Any further information can be gained by contacting me.

The money raised from these bouts will be donated to the Princess Alexandra Hospital Research Foundation. Needless to say donations to the Foundation will also be happily accepted. I have chosen the PAH Research Foundation because they are a local research foundation doing important research, and by all accounts, no one in Australia is doing research into FM. 

International Awareness Day

May 12^th 2019, is International Awareness Day for Chronic Immunological and Neurological Diseases, which includes Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Gulf War Syndrome (GWS), Multiple Chemical Sensitivity (MCS), and Fibromyalgia (FM). For the most part, many people will not know what many of these conditions are or how they affect people with them. Needless to say the International Awareness Days are designed to reverse this.

Obviously my main interest is raising awareness of FM. Information can be found all over the Internet, some of it is good some of it not so much. Below, is part of the Wikipedia page definition for Fibromyalgia.

“Fibromyalgia (FM) is a medical condition characterised by chronic widespread pain and a heightened pain response to pressure. Other symptoms include tiredness to a degree that normal activities are affected, sleep problems and troubles with memory. Some people also report restless legs syndrome, bowel or bladder problems, numbness and tingling and sensitivity to noise, lights or temperature. Fibromyalgia is frequently associated with depression, anxiety and posttraumatic stress disorder. Other types of chronic pain are also frequently present.

The cause of fibromyalgia is unknown; however, it is believed to involve a combination of genetic and environmental factors, with each playing a substantial role. The condition runs in families and many genes are believed to be involved. Environmental factors may include psychological stress, trauma and certain infections. The pain appears to result from processes in the central nervous system and the condition is referred to as a "central sensitization syndrome". Fibromyalgia is recognized as a disorder by the US National Institutes of Health and the American College of Rheumatology. There is no specific diagnostic test. Diagnosis involves first ruling out other potential causes and verifying that a set number of symptoms are present.” https://en.wikipedia.org/wiki/Fibromyalgia

Keeping Updated

Greetings,

I have a wad of articles which my mother gave me about fibromyalgia. I have read most of them, gone through others and disregarded what they said also because they were off-track. This formed the prime knowledge which I have been basing much of my conclusions about for quite a few years, especially considering most of these articles date back to the late 1990s. Things have changed.

I took these in with me when I saw my physiotherapist and he was impressed about the amount of reading that I had done, but suggested that I should update my knowledge. I had a think, and it is true, those articles are some 20 years out of date! Things can change quite quickly in the medical world and while somethings do stay the same others do change. Needless to say, I have been on the look out to see what has changed and quite a bit has.

Fibromyalgia has actually been recognised as a real condition by many doctors for starters. This is a big help because it was for many years just palmed off as just psychosomatic. Of course there are still doctors out there who are arguing against the existence of this disease because of its multiple presentations.

There is a lot more information out there than there was a while ago. More information for people who have the condition and also more information for medical practitioners as well. I encourage people who have the condition or who care for someone who has the condition, in any way to go and have a look what's out there. Not just one article, not just one point of view, but several different points of view. It is only through a collection of these points of view that you will get a real idea about what's going on.

There is some really exciting stuff out there. I may even get around to sharing some of the stuff which I have been reading. Keeping updated means that you will understand more about your condition and this can only be an asset. Take it as information that you can use to tailor your life around, or through circumstances so that you can live well, and more importantly LIVE.

Cheers,

Henry.

The 5% Rule

Greetings,

I truly apologise that it has been so long since I have posted here. I have thought about posting various things here but they did not seem to be related. I have been rather busy trying to get a book to print as I have moved into self-publishing. I am also still running my own fencing school and all of these things take time and energy, so the lack of time and spoons is an issue. This is not what I am here to discuss. The article for this post is about progression.

5%. It does not sound like much but it is important as it is further along than you were before. Progression is about building up energy and strength, this approach is about building up this energy and strength in a manageable way. So, you decide that you want to walk to improve your fitness. Aim for 105% of the distance each time you walk and you will improve your fitness, or 105% of the speed, but not both at the same time. When you do this you will have improved yourself 5%.

Having a chronic illness is about managing the strength and energy a person has at that point in time. There is no point in going to a gym and smashing out a full session if you are going to "crash" afterward and not going to move for a week afterward. These sharp sessions of improvement and decline are not great for your body and should be saved for things that you enjoy, if you do them at all. As far as exercise for health is concerned, you should only be pushing yourself far enough that you can begin to feel it, i.e. adding 5%. This way you can repeat the same thing again, even in the same week.

For myself, I have been going to a hydrotheraphy pool twice a week, most weeks anyway and aiming for the 5%. Sometimes it is just nice to relax in the nice warm water and do some stretching of my muscles, but even this servs a purpose of the 5% extension in stretching. I can usually manage twice a week because I only push myself the 5%. It is a manageable goal. This is what we all need to aim for, thus I have the "5% Rule" and I encourage you all to use it too.

Cheers,

Henry.

2017 is Gone, 2018 is Here

Greetings,

I don't usually do this, but I figured that I might anyway. This will be a kind of "year in review" but with a bit of a difference. While we need to look at things that have happened, it is also important to look forward to things that are coming, both to prepare for them and to hope for them. One thing that I will say, just sitting here, except for a couple of highlights, here and there 2017 is a bit of a blur now.

Well, 2017 had its upside and sure had its downside. The result being that it turned into a bit of a year with memories which I will keep and some things which I could get rid of, or reverse.

January started as it always does, hot. It also had all of the first month of the year poking and prodding by specialists, just to make sure that everything was going according to plan. There were also a couple of small swordplay things in there as well, just to cap the month off.

February was pretty dull, somewhere either in January or February my neck issue had also risen its ugly head, again. CT done to see if anything could be done, physiotherapy chosen instead. C5 - C7 is a mess and presses on the nerve giving me headaches and pain, real lots of fun when combined with the fibromyalgia (FM), but this is a recurring problem not something I can blame 2017 for.

Good things that happened over the early months, diagnosis of Central Sleep Apnoea (CSA) and a new machine meaning I am now getting real quality sleep, a real bonus. I can tell the difference without it, like a lot. Of course I had to pay for the mask myself which took a couple of months and a couple of hundred dollars.

Oh, yeah forgot, during the storms earlier in the year we got storm damage. It then has took about eight months to get the roof repaired, and the actual damaged part of the front of the house still has not been repaired yet as I am waiting to hear from the builder. Overall, thank goodness for insurance on the house.

The year wore on and I was given a diagnosis of plantar fasciitis, which explained the reason why my feet were getting so sore when I was standing on them for any length of time. Just another one to add to my list.

Went to Great Northern War (national SCA event), which was wet, very much so. Still had quite a bit of fun teaching fencing and also fencing. Won the Powerful Owl Rapier Tournament, which I was quite happy with considering the weather was doing my joints no favours whatsoever. It was also nice to see others fencing so well.

The calendar seems to be dotted with appointments during the colder months which I was not able to make, which was unfortunate, but this is kind of expected. There are also quite a few more doctor's appointments scheduled during this period as well.

Went to Fencing Fest as a paying customer for the first time, which was nice. Still did a class on cutting with milk bottles filled with water which was quite popular again. I will be running the event again next year. In August I also managed to get to fence a friend who I have been waiting to fence for 21 years, Nic Harrison, and it was everything that I had been waiting for.

September was its usual busy self. St Florian Baronial (local SCA tournament) and Swordplay 2017 (national HEMA event) resulted in me being in a wheelchair for the last day of Swordplay having pretty much run myself into the ground, this is called causing a fibro-flare because you worked it too hard. This resulted in me being off my feet for about a week. Due to a repetitive theme of this "week's recovery" every year, I have relinquished my role as Chief Safety Marshal for 2018.

In early October I was invited to join the Order of Defence (the highest level in the SCA possible for fencing), which I accepted. The elevation took place at the Burnfield 15th Birthday Bash, and the event contains memories which I will hold dear. This was a big thing for me. Also this year I sent of the manuscript of my first book to the publisher to be published, so hopefully that will be out this year.

Just when everything looked like it was going rather well, my cousin passed away on 17th December, she died saving her nephews, which is something which I will take with me, always a hero. Just to make it a real kick in the teeth it was the 10th anniversary of my mothers death on the 16th December, so the end of December looked pretty bleak for me and I found it quite hard to get into the whole "Christmas spirit". Casey and I did the easy thing and stayed home and let people visit us.

New Year's Eve was spent playing board games and card games with a few friends. The new year was rung in with relative quiet celebration.

The most important thing to remember is that 2017 is gone, 2018 is here and it is this year that you have to deal with. Yes, there is some fall-out which will brush over from one to the next, but you must move on and move on with a positive spirit. I have heard too many people say "Well, it can't be any worse than last year." Well, actually it can. You should do your damned hardest to make sure it isn't. You have to do your bit too.

Cheers,

Henry.

A Quick Buck

Greetings,

While not related to FM this is a thought which has been going through my head for some time and I decided that it was time to put it to "print". There are various considerations we need to make before we decide to make a quick dollar or two out of a hobby or something we do, and this post will go through some of the thought processes that I have recently been through.

I have three different blogs. I have this one, one about fencing and one which studies Elizabethan English and associated subjects. The fencing blog is by far the most popular of the two, indeed it hit 75,000 hits not to long ago. Even if you added the hits together of the other two you would not get close to that. This is discussing that blog, which I write to inform people about my thoughts with regard to various bits and pieces mostly about the use of the rapier, but other things as well.

I had previously looked at blogger's AdSense previously to see what the deal was, just in passing without any consideration of using it at all. In essence, you select adds, they go on your blog, when people hit those adds, you get money out of it, a simple process. Seemed like a simple idea and possibly a way to supplement my pension. As my fencing blog became more and more popular the consideration for using AdSense grew as I thought it would be nice to have a little extra cash on the side.

I established a date when I would put AdSense into the blog, and waited and thought about it. The date arrived and I decided not to do it. What? Why not? I have seen things commercialised all over the place. Advertisements being added to Youtube, free-to-air TV these days feeling like there are more advertisments than program, pay TV even having advertisments. I decided that I was not going to follow this trend. While my readers were in no way obligated to click on any of the advertisments, their mere presence would seem like I had caved into pressure.

If there are going to be these advertisements on my blog, they are going to be there because I put them there, because I want to sell the product. They will be products which I personally endorse and/or have used myself, or they are ones I have produced in some way myself. Commercialisation invades our lives all over the place, and it seems that if you are not making people pay for it, it is not worth having or reading. I disagree with this whole-heartedly. There is information and services which should be free, or as close to it as possible. We should not have to be bombarded by advertisements all of the time.

Cheers,

Henry.