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.

The List: I am here.

Greetings,

So people often ask me how I am doing and what's going on with my health. I usually give the short answer that "I am fine." or that "I am doing OK." For the most part, at that point in time when they ask it is mostly the truth. I don't usually tell all of the truth because it would take too long and would feel too much like complaining in my books and I just don't like doing that. I tell people for empathy not sympathy, I tell people for explanation of what's going on and not much more.

Just for a change I figure I will give some detail as to what's going on with me and give "the list" of various bits and pieces which are going on with me at the moment, and I would not be surprised if I have missed some in the process of making this list. What will be noted is that some of these issues are a daily issue for me and some of them are just irritations which emerge to annoy me every now and then.

1. Fibromyalgia (FM)
No surprises here. I would not be writing this blog if it was not for this condition. It is the one which causes the most issues most of the time. All of the issues impact upon this one and this one impacts upon all of the others. If it relates to pain it can be related back to FM either making it worse or better, usually worse.

2. Sarcoidosis
Update: As of late 2019 this is gone. No presence of it found in my liver as of last scan. Lungs seem to be relatively clear as well.

3. Osteoporosis
Update: As of late 2019 this is gone. The last Body Mass Density Scan said everything is back to normal.

4. Adrenal Suppression
Our good friend prednisone also caused adrenal suppression meaning that my adrenal glands are a little slow to respond to infections. The other symptoms of this one are tiredness, abdominal pain, low blood sugar and other irritations.

5. Coccydynia
"Tailbone" pain. Seems that somewhere in my exciting childhood I did some damage to my coccyx. The result is that I have issues with sitting for an extended period of time, and also rising from a seated position. There are lots of nerves which are connected to this area.

Update: after waiting on the public health system for a period of time, I finally got a coccygectomy, i.e. they removed the offending broken tailbone on 8 September 2022. I am gradually improving, some of the tailbone pain remains, but nerves are finickity things in their healing process. I am optimistic that I will eventually be able to wipe this one out as well.

6. Neck (c5-c7)
This one is a real issue as I get numbness in my fingers on both sides, though for some reason my left is definitely worse than my right. The pressure here seems to be sitting on a nerve connected to my elbow, which is not helpful, though the scans say that it should be affecting my right not my left. Probably the FM screwing things up again.

7. Gastro Oesophageal reflux disease (GORD) and Irritable Bowel Syndrome (IBS)
Lots of fun with eating and digesting of foods. I have been on various different diets to attempt to improve the situation with these two, they help mildly but not so much as how much I enjoy eating what I like. The IBS is also very much connected to FM as well which is not very helpful. The GORD is also related to stress, and with this list there is no surprise that I have a little issue with stress. Not to mention that FM causes issues with swallowing.

8. OSA (Obstructive Sleep Apnoea) and CSA (Central Sleep Apnoea)
Most people will be familiar with OSA where the soft palate of the mouth obstructs the breathing passage causing the person to stop breathing, and also causing snoring. CSA is a little more interesting, in this case the lungs just decide that they are not going to work and just simply stop working. The normal CPAP machine will not help with CSA, thus I have a special machine to deal with it which has variable pressure.

9. Plantar Facitis
Seems that I have been walking too much. So now I have special inner-soles for my shoes to stop my feet hurting so much because I won't stop walking. Besides it is my main mode of transport.

10. Peripheral Neuropathy
Another reason for my feet to hurt, I have almost no doubt that this has been caused by the FM indirectly or by my Neck or some other similar nerve-effect. In any case the feet are irritatingly sore and usually for no reason.

11. Migraine
These are finally under control thanks to various medications. I am very diligent in taking the medications which control these because I sure know when I don't.

12. Bone spur in Achilles' tendons
Picked up on an ultrasound when looking for something else, these only really cause me an issue when I have been on my feet for ages. Or when I have been doing lots.

13. Marfans Syndrome
This has given me some physical symptoms, mainly I have hyper-mobility through my joints, which is no help with the FM, and I seem to be still growing. Luckily I do not have any of the heart issues which seem to go along with this condition. The real issue is that I suspect that this diagnosis covered many of my FM symptoms when I was seeking a diagnosis.

14. Arthritis in thoracic spine
I have a little arthritis in my thoracic spine, my lumbar spine is in great condition. This has been causing some chest pains of late which is really annoying.

15. Asthma
The asthma has more or less disappeared. The only time that it ever appears is if I get a chest infection. Once that is cleared the asthma disappears with it so this is really a non-issue. I have not used a puffer in years.

16. Depression
With no great surprise I have some depression. This stems mainly from the chronic pain which I suffer from, but also other issues which are mainly to do with the various conditions which are listed above. It is usually the complications as a result of the conditions which cause the depression. I am not one to complain so I put on a happy face and go on with my life. I am not the sort of person to go into a hole and wallow in my pain and unhappiness of my lot.

The question must be asked as to why I have published this list of issues and mentioned how they affect me. I have done this because people have struggles which we do not know about. Most of the time they are hidden from the world because it is "not the done thing" to present them to the world because the individual seems like they are complaining.

The "R U OK?" Day is one day out of 365 where the question is asked and it is almost a rhetorical question because while people are somewhat encouraged to tell what's going on there is no more. I publish this list to say that "No, I am not OK." and I am fine with this. I have my struggles and I will continue to fight them. I have days where I find things incredibly hard. I have days where I wonder if it would not be just easier for me to just stop... everything. The thing is that I know that there are people out there who support me and who will help me through my trials and tribulations.

I will stand with all of those who are not OK. I will stand with those who are finding it hard. I will stand with all of those who are tested every day of their lives. I will stand with them and say that: I understand that it is hard, I know that you have your good days and your bad. Learn from the bad days; live for and remember the good days. To those who I call family and friends, know that I am here.

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.

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.

Pain to Power

Greetings,

I know it has been quite a while since I have put anything on this blog, I have been having a lack of inspiration for anything of relevance to write. My fencing blog (afencersramblings.blogspot.com.au) seems to be so much easier to write for some reason. I am guessing that this one is personal and I do not know exactly how much of my personal stuff people want to hear about. I am really not the sort of person who likes to sit around complaining about stuff. I write here to inform and to give others ideas about how to deal with things in their own lives. So on to the subject of the current post before I get too side-tracked...

The purpose of this post is to look at how we can turn our pain into power. No, I am not talking about working a generator, I am talking about using it to motivate and to make us do more rather than withdraw into our shells as we often want to. This may seem very strange to some, as soon as the pain starts they stop because it hurts and therefore the concept that the pain can make them powerful is going to be rather alien to them. Obviously for me, not so much.

"Work through the pain." How many times have you heard this statement? It is often proposed by gym-junkies and the like when they are exercising. They are talking about pain which is developed by fatigue or a "stitch". This is not the sort of pain that people with fibromyalgia (FM) and similar conditions are familiar with. For them it is nerve pain, much more painful, and often longer lasting.

Step 1: Choosing

The first part of turning your pain into power is that when the pain strikes you have two choices. No, actually you really do. You can stop what you are doing, or you can continue. If what you are doing is not particularly pleasurable or you are not particularly motivated to doing it then stopping and saving your energy is probably the best option. Save your energy for battles you want to pick. If you are doing something that you want to be doing or is pleasurable to you and you are motivated to do, then not stopping is probably an option. You have to choose not to stop.

Step 2: Energy

The next bit is having a look how much energy resisting is going to take and how much you have in reserve. Time to "count the spoons" as some would put it. Resisting the pain and continuing is going to take energy, and in some instances it is going to take quite a bit of it. The questions you have to ask yourself are: Do you have this energy? Are you willing to spend it? Are you willing to put up with the consequences of spending it? Is the outcome going to be worth it? The last question is actually the most important as far as I am concerned, the rest are not so important, but that is me.

Step 3: Spending the Energy

Out of all of the steps this is the hard bit and takes the real determination. This is the bit where most people will feel that they have failed, or will quit trying and so forth. This is the bit where you stare the pain down and tell it who's boss. This is the bit where you look it in the eye and tell it that you are going to continue what you are doing until you want to stop, not until it wants to stop you. This is going to take determination and energy to keep going. Most importantly believe that you can do it and do it.

Step 4: Downtime

After any energy expenditure you need some downtime. This will allow you to recharge the batteries a little. At this point in time you should not be thinking about how you went, only about resting and recharging. To tell you the truth, this is the bit that I have the hardest time with, I always feel that I should be doing something. Most of the time for me it is "crash"-time rather than downtime, and I do not recommend it. Take time to rest instead.

Step 5: Evaluation and Preparation

After you have had some time to recharge your batteries you need to have a look at how you did. A responsible person always evaluates what they have done and learns from it. Most importantly, this is personal evaluation. You do not need to, nor should you, compare your successes with anyone else. Please notice that I have not mentioned the word "failure". If you did a little bit more than you would have done because you chose to. You have a success. The successes do not have to be big, the just have to be present. Find out what you can do differently next time to improve your situation so that you can do better. The next part is preparation and preparing to make the same choice again, because it will come around again, and you have to be willing to make the same choice again. The more you do it, the more motivated you will become and the more powerful you will become. Hence pain to power.

If you are reading this and think that this is an easy sort of thing to do, you are kidding yourself. It is even more difficult if you are not prone to resisting the pain and letting it have its way. The method I am proposing here is hard, and it takes time, but it is about standing up and taking power over the pain rather than letting it have all the power. No, I am not saying that you should ditch all your medications, that's crazy, but the power of your own motivation can help a hell of a lot.

I am proposing a method that works for me. Now be warned I am a stubborn sod, any one of my two siblings will tell you this, as will many of my friends. I hate being confined by things. Most of all I hate being confined by my conditions, thus I fight against them. Now a lot of the time this can land me in some hot water, you will not posts about me talking about "crashes". This is because I push the method that I am proposing to the extreme and then suffer the consequences. What I am proposing for you is to use it in a much more measured fashion. Have a go, what's the damage it can do to try?

Cheers,

Henry.

You Know You Have Chronic Pain When... (Part 3)

Greetings,

It has been a while. This is the continuation of my list from the last part, which I started a while ago. You can read the first part here: http://alifewithfibromyalgia.blogspot.com.au/2015/10/you-know-you-have-chronic-pain-when.html and the second part not too far further along.

16) Your partner gauges how much pain you are in on the basis of how many things you have threatened to destroy, how many people you have threatened to kill recently, and whether this is above "normal".
17) The difference between a nervous tic and an indication of pain is usually the intensity.
18) When you take pain medication and the pain actually goes away it feels "wrong".
19) Sometimes it is just a question of what is going to hurt the most in the end.
20) Other times it is a question of what is going to hurt the least in the end.

Well, that's 20. I suppose I should do a "list so far", which I may do at some point in time. If I think of any more once again, I will add them here again in batches of five.

Cheers,

Henry.

You Know You Have Chronic Pain When... (Part 2)

Greetings,

It has been a while. This is the continuation of my list from the last part, which I started a while ago. You can read the first part here: http://alifewithfibromyalgia.blogspot.com.au/2015/10/you-know-you-have-chronic-pain-when.html .

11) There is a pile of empty medicine packets on the floor beside your bed because you couldn't get them to the bin. (Thanks, Claire :) )
12) You feel that friends and family should feel privileged to see you out of your pyjamas when they visit.
13) Sexual encounters are more dependent on pain level than your interest.
14) You ignore pain to keep functioning and only realise how bad it is when you get severely nauseated.
15) You need an atmospheric thermometer because you can't tell what the actual "room" temperature is.

If I can find/think of any more I will add them as I go. More than likely I will be adding them in batches of five, just like this one.

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.