Greetings,
Thought I might have a little chat about this thing called recovery, or down-time as I call it. This is the period of time which you spend getting back to where you were after strenuous activity or after illness or injury. In my case, the down-time, can be directly related to what I have been doing and what the reason for the down-time is.
In the case of strenuous activity, depending on what it was, the length of the down-time after this will be. This is actually the main reason that I had to give up heavy fighting in the SCA (Society for Creative Anachronism), the down-time was simply just too long. It would take me an entire week to get back to where I should be, and this is not good. It kinda cuts down the amount of training you can do for starters. A really hard-fought tournament for fencing should take me about two or three days to recover in comparison, hence me sticking with fencing.
One of the problems with recovery time with regard to FM is the fact that FM likes to "play" with the nerves so you don't know whether you are feeling like crap because of the illness, injury or activity, or just because you are having a "bad day". This tends to cause all sorts of problems in gauging whether you have actually recovered from an injury or not. Perfect example, some time ago, about eight weeks actually, I managed to crack a rib. Now, the nominal recovery time for such an injury is about six weeks, due to the FM this has actually taken eight, and it is still a little tender.
In the case of ilnesses, it is usually dependent on the illness, but there is a similar result. Lots of confusion as to whether or not there has actually been a recovery done or not. This is not really helpful because the doctor will tell you that the illness has gone, but you can still feel bad due to the FM being a pain in the butt about it. When it comes down to it, extra stress placed on the body or the mind of a person with FM will cause all sorts of issues.
So, with all the confusion about down-time with regard to FM, and whether recovery has actually completed or not. A person can feel that they have recovered and try and go and do things. If they have properly recovered, everything is good. If not well, you can just start adding days and weeks on to the recovery time. This can cause all sorts of problem when you can't tell wether you feel rotten because you need more recovery time or it is just the FM playing up. If I play it "safe" I swear that I would not get out and manage to do anything.
I tend to play the good old "FM roulette" with regard to this. I give the down-time a certain period of time and once that is done I go back to what I should be doing. In the cases where the down-time has been completed, everything is good, when it is not, well, it beats sitting around doing nothing I can tell you. I honestly would rather be out doing stuff than stuck at home doing nothing. I do tend to push myself a little harder than I should, but as far as I am concerned, the enjoyment that I have doing it far out-weighs anything else.
Cheers,
Henry.
Thursday, November 26, 2009
Saturday, November 21, 2009
21/11/2009 - Sleep Issue - What's a Pattern?
Greetings,
Well, this is the first one "off the bat" so to speak. I am sitting here, it is hot, it is about 12:40am, and I am expecting to be up for another couple of hours yet. Being up a stupid hours of the night is not unusual for me, it is just damned annoying. I have mentioned sleep issues, with regard to not getting quality sleep, one issue I didn't mention was getting to sleep in the first place.
If I do not ensure that I am dog-tired when I go to bed there is the good chance that I will be laying there staring at the ceiling for hours until I finally fall asleep. This is especially the case when I have things on my mind, or just haven't done enough for the day. Some would say that I need to be on sleeping pills, and they would be right except for the fact that they would have a reaction with one of my painkillers. So I skip the sleeping pills and stick with the painkillers.
I am sitting here just writing off the top of my head so this is probably not making as much sense as my usual blogs do. I am expecting that I will be up until about 3 am or thereabouts before my body finally decides that I can be allowed to go to bed. This can be frustrating at times, but the most annoying is when I am supposed to be getting up early for an appointment of some kind. I have tried re-organising my sleep pattern so that I got to bed at a reasonable hour and get up in the morning alright. This usually lasts for about a week, if I am lucky.
I suppose I could go and write some more of the other stuff that I have to do, that would kill some time, right? Sorry, not letting you do that we are going to start being a pain and causing your hands to cramp up again. I know I will read a book, get some of that done. Sorry, wrong again, not going to let you concentrate that much. So I suppose I will be spending the next couple of hours either surfing the 'net or vegging out in front of a movie or two.
Anyway, as I have just said my hands are really beginning to pack up on me so I am going to have to get off here quick smart. At least using the touch-pad on the laptop uses smaller motions and I can rest one hand. Hopefully my next one will have some better things to say for all my readers.
Cheers,
Henry
Well, this is the first one "off the bat" so to speak. I am sitting here, it is hot, it is about 12:40am, and I am expecting to be up for another couple of hours yet. Being up a stupid hours of the night is not unusual for me, it is just damned annoying. I have mentioned sleep issues, with regard to not getting quality sleep, one issue I didn't mention was getting to sleep in the first place.
If I do not ensure that I am dog-tired when I go to bed there is the good chance that I will be laying there staring at the ceiling for hours until I finally fall asleep. This is especially the case when I have things on my mind, or just haven't done enough for the day. Some would say that I need to be on sleeping pills, and they would be right except for the fact that they would have a reaction with one of my painkillers. So I skip the sleeping pills and stick with the painkillers.
I am sitting here just writing off the top of my head so this is probably not making as much sense as my usual blogs do. I am expecting that I will be up until about 3 am or thereabouts before my body finally decides that I can be allowed to go to bed. This can be frustrating at times, but the most annoying is when I am supposed to be getting up early for an appointment of some kind. I have tried re-organising my sleep pattern so that I got to bed at a reasonable hour and get up in the morning alright. This usually lasts for about a week, if I am lucky.
I suppose I could go and write some more of the other stuff that I have to do, that would kill some time, right? Sorry, not letting you do that we are going to start being a pain and causing your hands to cramp up again. I know I will read a book, get some of that done. Sorry, wrong again, not going to let you concentrate that much. So I suppose I will be spending the next couple of hours either surfing the 'net or vegging out in front of a movie or two.
Anyway, as I have just said my hands are really beginning to pack up on me so I am going to have to get off here quick smart. At least using the touch-pad on the laptop uses smaller motions and I can rest one hand. Hopefully my next one will have some better things to say for all my readers.
Cheers,
Henry
Thursday, November 19, 2009
Fencing and FM
Greetings,
Fencing and fibromyalgia. A person would expect that with the symptoms present in fibromyalgia it would preclude an individual from fencing. Well, I am happy to say that this is simply not the case. To tell the truth, if it was not for fencing my symptoms would be a lot worse and I would be substantially less active than I am now. Essentially this blog will go through three main sections, why fencing, benefits of fencing, and the balancing act. Each one of these will cover a different aspect with regard to fencing and FM and hopefully explain a little of my own situation. This will actually be the last of these truly introductory blogs, after this they will be on stuff which comes to mind for me on the subject.
Why fencing? Now, I have been asked that question more times than I would care to count. I have always been interested in swords and swordplay so fencing seemed to be the way to go. I actually developed the bug for fencing years before the symptoms of fibromyalgia actually manifested. There was no way that I was going to give it up. For me it is an interest area with a breadth of different subjects and points of view to look at. There is a high level of skill available to the practitioner if only they are willing to put in the work to get there. Other elements are present such as research into the various subjects and manuals which are available giving something else to do when not actually training or bouting. This is all beside the fact that I seem to have a natural talent for fencing to start with, how much talent, I will leave to other people to decide. The benefits of doing fencing, well I found out about them much later on.
The benefits gained from fencing are both physical and psychological. It essentially gives you the whole package to look at. From a purely physical point of view, and not looking at it in association with FM, it is an exercise which improves fitness and develops different skills. From the more FM point of view, it is relatively low-impact (note the word relatively) and it involves the movement and use of most of the joints in the body. The simple movements of fencing increase blood-flow to these areas of the body. It is due to this particular aspect that fencing has been a physical benefit to me. Fencing has kept my joints moving, supplying relatively regular exercise his conditioning and maintaining the condition of my joints.
The development of control is essential to fencing, this is physical control over your own actions, but also internal self-control. You need to be able to wait until the optimum moment to strike in order to be successful. The fencer who goes in like a raging bull will not do as well as the one who has self-control and reads and plans. For the person with fibromyalgia and a true passion for fencing, it also develops problem-solving abilities. When a person is stubborn enough not to let a little joint pain get in the road he tends to look at ways around this. Problems with walking or sore legs, simple fence from a chair, ask anyone who knows me about this one. I have strapped my sword to my hand in order to be able to fence because my hands were sore and weak. If there is a way around a problem, I have either suggested, tried or will give it a good think to figure it out.
There is always something to learn. The fencer who stops learning is one who is bound to get hit by the one who does not. There is physical skills to learn and to hone. There are also more intellectual pursuits to be made. The studying of Renaissance period manuals, examining techniques and finding ways to use them. The discussion of equipment and its application. There is always something to learn about fencing. The different schools of thought go with different skill-sets which can be learnt, which means that some subjects have a physical and mental aspect as well.
Achievements in fencing are great. Personal ones tend to matter to the individual more than anything anyone else will give them. I am proud of my achievements that I have made in fencing and without it I would not. Yes, I have been awarded several times for fencing within the Society for Creative Anachronism (SCA) a medieval and Renaissance group of which I am a member. In my case the personal achievements of getting a skill-set correct or seeing my students improve as they learn more feels more important to me. Every achievement should be noted in some form and recognised at least by yourself.
The balancing act is exactly what is involved in order to be active in fencing and achieve things. There are two aspects to be aware of, doing to much, and doing too little. From the fencing aspect it is the latter which is worse as your skills will begin to drop if you are not regularly training. In my case my FM actually gets worse if I am not fencing or doing something similarly active on a regular basis. Of course the other side is doing too much. In this particular case it involves overworking yourself resulting in physical symptoms such as fatigue and joint pain. If I have to make a choice of making the mistake of doing too little or doing too much, I will always go for the doing too much. I understand the results of doing to much, but the actual doing of this is actually so satisfying that I would rather put up with the inconvenience and pain than not fence.
I have had discussions with specialists, occupational therapists and physiotherapists, in all cases they have said that I would not be as mobile as I am now if it was not for fencing. It has in some small cases improved my condition, and in most cases maintained it at a level which I am happy to live with. Fencing has also given me the impulse to write all sorts of articles, let alone this blog. It is the real reason that I get out of bed in the morning. This particular hobby supplies my enthusiasm and motivation. In all cases when I talk to my doctor the question of "...and how will this affect my fencing?" will always come up. Fencing and FM do mix and mix quite nicely as far as I am concerned. Have a go see what you can do you may find that it has the same benefits for you, just remember it will take time.
Cheers,
Henry.
Fencing and fibromyalgia. A person would expect that with the symptoms present in fibromyalgia it would preclude an individual from fencing. Well, I am happy to say that this is simply not the case. To tell the truth, if it was not for fencing my symptoms would be a lot worse and I would be substantially less active than I am now. Essentially this blog will go through three main sections, why fencing, benefits of fencing, and the balancing act. Each one of these will cover a different aspect with regard to fencing and FM and hopefully explain a little of my own situation. This will actually be the last of these truly introductory blogs, after this they will be on stuff which comes to mind for me on the subject.
Why fencing? Now, I have been asked that question more times than I would care to count. I have always been interested in swords and swordplay so fencing seemed to be the way to go. I actually developed the bug for fencing years before the symptoms of fibromyalgia actually manifested. There was no way that I was going to give it up. For me it is an interest area with a breadth of different subjects and points of view to look at. There is a high level of skill available to the practitioner if only they are willing to put in the work to get there. Other elements are present such as research into the various subjects and manuals which are available giving something else to do when not actually training or bouting. This is all beside the fact that I seem to have a natural talent for fencing to start with, how much talent, I will leave to other people to decide. The benefits of doing fencing, well I found out about them much later on.
The benefits gained from fencing are both physical and psychological. It essentially gives you the whole package to look at. From a purely physical point of view, and not looking at it in association with FM, it is an exercise which improves fitness and develops different skills. From the more FM point of view, it is relatively low-impact (note the word relatively) and it involves the movement and use of most of the joints in the body. The simple movements of fencing increase blood-flow to these areas of the body. It is due to this particular aspect that fencing has been a physical benefit to me. Fencing has kept my joints moving, supplying relatively regular exercise his conditioning and maintaining the condition of my joints.
The development of control is essential to fencing, this is physical control over your own actions, but also internal self-control. You need to be able to wait until the optimum moment to strike in order to be successful. The fencer who goes in like a raging bull will not do as well as the one who has self-control and reads and plans. For the person with fibromyalgia and a true passion for fencing, it also develops problem-solving abilities. When a person is stubborn enough not to let a little joint pain get in the road he tends to look at ways around this. Problems with walking or sore legs, simple fence from a chair, ask anyone who knows me about this one. I have strapped my sword to my hand in order to be able to fence because my hands were sore and weak. If there is a way around a problem, I have either suggested, tried or will give it a good think to figure it out.
There is always something to learn. The fencer who stops learning is one who is bound to get hit by the one who does not. There is physical skills to learn and to hone. There are also more intellectual pursuits to be made. The studying of Renaissance period manuals, examining techniques and finding ways to use them. The discussion of equipment and its application. There is always something to learn about fencing. The different schools of thought go with different skill-sets which can be learnt, which means that some subjects have a physical and mental aspect as well.
Achievements in fencing are great. Personal ones tend to matter to the individual more than anything anyone else will give them. I am proud of my achievements that I have made in fencing and without it I would not. Yes, I have been awarded several times for fencing within the Society for Creative Anachronism (SCA) a medieval and Renaissance group of which I am a member. In my case the personal achievements of getting a skill-set correct or seeing my students improve as they learn more feels more important to me. Every achievement should be noted in some form and recognised at least by yourself.
The balancing act is exactly what is involved in order to be active in fencing and achieve things. There are two aspects to be aware of, doing to much, and doing too little. From the fencing aspect it is the latter which is worse as your skills will begin to drop if you are not regularly training. In my case my FM actually gets worse if I am not fencing or doing something similarly active on a regular basis. Of course the other side is doing too much. In this particular case it involves overworking yourself resulting in physical symptoms such as fatigue and joint pain. If I have to make a choice of making the mistake of doing too little or doing too much, I will always go for the doing too much. I understand the results of doing to much, but the actual doing of this is actually so satisfying that I would rather put up with the inconvenience and pain than not fence.
I have had discussions with specialists, occupational therapists and physiotherapists, in all cases they have said that I would not be as mobile as I am now if it was not for fencing. It has in some small cases improved my condition, and in most cases maintained it at a level which I am happy to live with. Fencing has also given me the impulse to write all sorts of articles, let alone this blog. It is the real reason that I get out of bed in the morning. This particular hobby supplies my enthusiasm and motivation. In all cases when I talk to my doctor the question of "...and how will this affect my fencing?" will always come up. Fencing and FM do mix and mix quite nicely as far as I am concerned. Have a go see what you can do you may find that it has the same benefits for you, just remember it will take time.
Cheers,
Henry.
Thursday, November 12, 2009
My Coping Mechanisms
Greetings,
The previous blogs have been designed to introduce you to FM and some of the issues associated with it. This was designed to create a level of understanding so that you can understand the problems that I face having this particular condition. The important thing here is that it is understanding that I am seeking, maybe a little empathy, but sympathy is not the goal. To this point this blog will be dealing with some of the ways that I deal with having FM, and the counters which have been developed. Some of these are medical and some are things which I have worked out for myself.
One of the greatest problems with FM, aside from the varying symptoms, is its randomness. Not knowing how well you will function tomorrow leads to frustration in a lot of ways. In most instances I approach this by living day to day except for those instances where this is not possible. You can plan for some of the days where you know things are going to be a problem, but this is really only a modicum in the grand scheme of things. Medication also helps level out the ups and downs also.
The biggest element in medication is getting on to one which suits you. This requires a lot of negotiation with your doctor. I have been prescribed all sorts of medication and it took quite some time before we found a combination of medications which enabled my symptoms to be dealt with, without having any major side-effects from the individual medications or the combinations of them. Anti-depressants are the prime way for dealing with the depression associated with FM and for the most part they work quite well. Unfortunately this does not deal with all of the problems associated with the condition. They do help, but they are not the total answer to all of the problems posed by FM.
Pain is an element of FM which cannot be ignored, as much as I have tried to over the years. I have a relatively high pain tolerance, but painkillers do help quite a bit in dealing with this. Once again it is important to get a painkiller which suits you and of course, does not interact badly with the anti-depressant. There are some over-the-counter painkillers which can help take the edge off the pain associated with FM. In most instances pain is an element which is pretty much constant and the painkillers bring it down to a level which I can deal with. Of course on those good days I am actually free of pain and this is a god-send. Getting decent sleep is a great thing and helps with the condition, but it is not always possible to do this naturally. This is where sleeping tablets can help the process.
Sleep is the time when your body recovers from the day's activities and if it is not quality sleep you will not recover from the stresses of the day. Sleeping tablets can help with this and prevent a person from lying in their bed for hours thinking too much, and eventually counting the ridges in the ceiling or the amount of panels in the walls. The best sort of sleeping tablet is one that gets you to sleep and keeps you there. Of course it also needs to run its entire course before the next day comes so you do not wake up drowsy. The selection of this medication as with the other two above has to be done carefully so there are not interactions, and so the side-effects are minimised. The combination of these three medications help you to smooth out the rough patches in your existence, but never quite completely do the job. The individual also needs to find other things to assist them.
Foods which you enjoy eating are always a good thing as it encourages you to eat them. A loss of appetite in my case is usually the result of stress or pain depending on the particular situation, and of course food is fuel. Trying to run on an empty tank is bound to result in failure. My diet in general has not changed all that much from previously. There are supposed diets which help with FM, but I have never tried one. I have found that eating healthy foods which I like works much better than most diets that I have seen. This is where we will see a little irony in my case. According to some doctors, red meat, sugar and caffeine are all bad for people with fibromyalgia, along with several other things. I looked at this particular list and went "No way." This would take a great deal of things out of my diet that I actually enjoy. This is where the randomness of FM truly shows its face, especially in my case, with regard to food. I actually found that caffeine actually reduces my level of fatigue, increases my level of energy and increases my capacity to do things that I enjoy. I told my doctor about this particular situation and he told me if it works use it. The result of this is that I actually drink quite a lot of caffeinated beverages, eat what I want, and feel much better for it.
I have categorised individuals with FM into two main camps. Now, before I do this I must say that this is my classification and nothing medically based, just something that I have observed. The first group tends to be rather inactive. This is usually the result of them being afraid of being in pain due to activity. These people tend to wrap themselves up and don't tend to do much. The other group are those who decide that going out and doing things can only improve their outlook on life. These individuals go out and find active things to do and tend to push themselves in these activities. Of course this can result in them being in pain afterward, but it is the achievement that they have made which is more important to them. I have quite squarely landed myself in the second group. I have found that an increased level of activity actually improves my feelings of myself and also my pain levels.
With regard to activity, there are two types of activity that I use in order to cope with my condition. These are usually dependent on what I am able to do during the day. The first type of activity is less active. It is things like playing computer games, reading and other more inside activities. The second type of activity involves going out and actively participating in activities which involve physical activity. These activities are things such as walking, playing sports and others.
I use the less active activities on those days where I am not feeling so good. These improve the situation as I am able to see achievement in what I manage to do during that day, even if it is only achieving words written, or some game played. These activities are designed to keep the mind active while giving the body a rest. It is the self-recognition of the achievement of the activity which is important. Anyone who knows me knows that I love fencing. This is the major physical activity that I am involved in when I am feeling well. Once again it is the achievements resulted which enable the me to feel good about it. I will actually be writing a later blog about the benefits of fencing to the individual with FM. Both of these types of activity relieve a level of stress and this is important as it does improve my overall well-being.
The final coping mechanism I would like to talk about is an external one. It is not something that I take and it is not something that I do. It is something that others do for me. One of my greatest assets in coping with FM is my family and my friends. The supply a support network which has helped me a great deal in coping with my condition. This is not just through doing things for me that I can't because I am having a bad day, it is simple things like simple visits and communcation with me. A simple conversation to see how I am and what sort of issues I may be having is always helpful as it allows me to get things out of my system. This sounds really simple, but I can tell you for me this has been a hard path. I used to not talk about how I was actually feeling, I would hide my pain and discomfort as I felt that they could not help me, so why burden them? The encouragement to do the various activities that I participate in outside and also my more solitary activities has been a great asset. This level of understanding from their point of view has helped me greatly to understand that I can get help when I need it, and there really is the achievements that I only really percieved to that point in time. To these people, and you know who you are, I must say thank you, you have all helped me greatly.
While there is no recognised cure for fibromyalgia, it can be dealt with, even on a day to day basis. It is only through negotiation with others, my doctor, and friends and family that I have found that I can cope, and most of all I am not alone. Each one of these people may have suggestions for things that you can do in order to improve yourself, or may just be a friendly ear to talk to. I would not be in such a more stable condition that I am now without the help of my current doctor. Through his various medication regimes and support my symptoms for the average day are quite level. Without the combination of these coping mechanisms I would not be in the more positive situation that I am in now. I realise that I will continue to have good days and bad days, but at least with the coping mechanisms that I have developed myself and those given to me, I will push through it.
Cheers,
Henry.
The previous blogs have been designed to introduce you to FM and some of the issues associated with it. This was designed to create a level of understanding so that you can understand the problems that I face having this particular condition. The important thing here is that it is understanding that I am seeking, maybe a little empathy, but sympathy is not the goal. To this point this blog will be dealing with some of the ways that I deal with having FM, and the counters which have been developed. Some of these are medical and some are things which I have worked out for myself.
One of the greatest problems with FM, aside from the varying symptoms, is its randomness. Not knowing how well you will function tomorrow leads to frustration in a lot of ways. In most instances I approach this by living day to day except for those instances where this is not possible. You can plan for some of the days where you know things are going to be a problem, but this is really only a modicum in the grand scheme of things. Medication also helps level out the ups and downs also.
The biggest element in medication is getting on to one which suits you. This requires a lot of negotiation with your doctor. I have been prescribed all sorts of medication and it took quite some time before we found a combination of medications which enabled my symptoms to be dealt with, without having any major side-effects from the individual medications or the combinations of them. Anti-depressants are the prime way for dealing with the depression associated with FM and for the most part they work quite well. Unfortunately this does not deal with all of the problems associated with the condition. They do help, but they are not the total answer to all of the problems posed by FM.
Pain is an element of FM which cannot be ignored, as much as I have tried to over the years. I have a relatively high pain tolerance, but painkillers do help quite a bit in dealing with this. Once again it is important to get a painkiller which suits you and of course, does not interact badly with the anti-depressant. There are some over-the-counter painkillers which can help take the edge off the pain associated with FM. In most instances pain is an element which is pretty much constant and the painkillers bring it down to a level which I can deal with. Of course on those good days I am actually free of pain and this is a god-send. Getting decent sleep is a great thing and helps with the condition, but it is not always possible to do this naturally. This is where sleeping tablets can help the process.
Sleep is the time when your body recovers from the day's activities and if it is not quality sleep you will not recover from the stresses of the day. Sleeping tablets can help with this and prevent a person from lying in their bed for hours thinking too much, and eventually counting the ridges in the ceiling or the amount of panels in the walls. The best sort of sleeping tablet is one that gets you to sleep and keeps you there. Of course it also needs to run its entire course before the next day comes so you do not wake up drowsy. The selection of this medication as with the other two above has to be done carefully so there are not interactions, and so the side-effects are minimised. The combination of these three medications help you to smooth out the rough patches in your existence, but never quite completely do the job. The individual also needs to find other things to assist them.
Foods which you enjoy eating are always a good thing as it encourages you to eat them. A loss of appetite in my case is usually the result of stress or pain depending on the particular situation, and of course food is fuel. Trying to run on an empty tank is bound to result in failure. My diet in general has not changed all that much from previously. There are supposed diets which help with FM, but I have never tried one. I have found that eating healthy foods which I like works much better than most diets that I have seen. This is where we will see a little irony in my case. According to some doctors, red meat, sugar and caffeine are all bad for people with fibromyalgia, along with several other things. I looked at this particular list and went "No way." This would take a great deal of things out of my diet that I actually enjoy. This is where the randomness of FM truly shows its face, especially in my case, with regard to food. I actually found that caffeine actually reduces my level of fatigue, increases my level of energy and increases my capacity to do things that I enjoy. I told my doctor about this particular situation and he told me if it works use it. The result of this is that I actually drink quite a lot of caffeinated beverages, eat what I want, and feel much better for it.
I have categorised individuals with FM into two main camps. Now, before I do this I must say that this is my classification and nothing medically based, just something that I have observed. The first group tends to be rather inactive. This is usually the result of them being afraid of being in pain due to activity. These people tend to wrap themselves up and don't tend to do much. The other group are those who decide that going out and doing things can only improve their outlook on life. These individuals go out and find active things to do and tend to push themselves in these activities. Of course this can result in them being in pain afterward, but it is the achievement that they have made which is more important to them. I have quite squarely landed myself in the second group. I have found that an increased level of activity actually improves my feelings of myself and also my pain levels.
With regard to activity, there are two types of activity that I use in order to cope with my condition. These are usually dependent on what I am able to do during the day. The first type of activity is less active. It is things like playing computer games, reading and other more inside activities. The second type of activity involves going out and actively participating in activities which involve physical activity. These activities are things such as walking, playing sports and others.
I use the less active activities on those days where I am not feeling so good. These improve the situation as I am able to see achievement in what I manage to do during that day, even if it is only achieving words written, or some game played. These activities are designed to keep the mind active while giving the body a rest. It is the self-recognition of the achievement of the activity which is important. Anyone who knows me knows that I love fencing. This is the major physical activity that I am involved in when I am feeling well. Once again it is the achievements resulted which enable the me to feel good about it. I will actually be writing a later blog about the benefits of fencing to the individual with FM. Both of these types of activity relieve a level of stress and this is important as it does improve my overall well-being.
The final coping mechanism I would like to talk about is an external one. It is not something that I take and it is not something that I do. It is something that others do for me. One of my greatest assets in coping with FM is my family and my friends. The supply a support network which has helped me a great deal in coping with my condition. This is not just through doing things for me that I can't because I am having a bad day, it is simple things like simple visits and communcation with me. A simple conversation to see how I am and what sort of issues I may be having is always helpful as it allows me to get things out of my system. This sounds really simple, but I can tell you for me this has been a hard path. I used to not talk about how I was actually feeling, I would hide my pain and discomfort as I felt that they could not help me, so why burden them? The encouragement to do the various activities that I participate in outside and also my more solitary activities has been a great asset. This level of understanding from their point of view has helped me greatly to understand that I can get help when I need it, and there really is the achievements that I only really percieved to that point in time. To these people, and you know who you are, I must say thank you, you have all helped me greatly.
While there is no recognised cure for fibromyalgia, it can be dealt with, even on a day to day basis. It is only through negotiation with others, my doctor, and friends and family that I have found that I can cope, and most of all I am not alone. Each one of these people may have suggestions for things that you can do in order to improve yourself, or may just be a friendly ear to talk to. I would not be in such a more stable condition that I am now without the help of my current doctor. Through his various medication regimes and support my symptoms for the average day are quite level. Without the combination of these coping mechanisms I would not be in the more positive situation that I am in now. I realise that I will continue to have good days and bad days, but at least with the coping mechanisms that I have developed myself and those given to me, I will push through it.
Cheers,
Henry.
Monday, November 9, 2009
The Personal Impact of Fibromyalgia
Greetings,
How fibromyalgia (FM) affects the particular person is personal in many ways. Not all people with the condition are affected in the same ways or to the same degree. In my case it is usually, if I can actually use that word, associated with four main areas. These are very much interconnected as some physical effects are associated with mental effects. Not all of them will happen at the same time, though on particularly bad days they can. In my particular case I have some good days and some bad days. Unfortunately due to the condition itself it can be very difficult to pick what the next day will be like. The symptoms that I have in particular have been described previously and an explanation of the impact of these will be described in very general terms.
In the case of most of my issues there are certain trigger mechanisms which can result in a bad day happening. A change in weather, or changeable weather affects me quite a bit. Cold weather is worse, but where warm weather is changeable it can be just as bad. Over-working myself is a definite trigger. If I work myself hard for a day or several days in a row, this tends to build up and create a problem. There are also some psychological effects which can affect my physical state. If I have a particularly stressful time due to some particular occurrence, this can lead to physical symptoms manifesting resulting in a bad day.
One of the issues which I have is a lack of sleep, or good sleep as the case may be. What happens is that sleep is interrupted by pain or other issues resulting in bad sleep, or a lack of deep sleep results in the body being inadequately rested. Some particularly bad days even if I have upwards of eight or even ten hours sleep, because it is not particularly good or deep the result is still the same if I had a lack of sleep. A lack of sleep or quality sleep as the case may be will result in an increase in fatigue and some of the mental issues that will be described. The lack of deep sleep results in a lack of dreams which can affect mental issues also this can be a particular problem over long periods of time and is usually triggered by an increase in stress.
Fatigue is one of those things that all people with FM get to some varying degree. Everyone feels tired and this is usually due to a lack of nourishment or sleep and can be remedied by eating or getting some sleep. In the case of a person with FM even these solutions will sometimes be ineffective. This fatigue is long-lasting and can sometimes last a full day or even multiple days in a row. This will affect a person's mental state. In my case it makes it difficult to think properly or clearly. This particular factor, in my case can also increase my pain levels which makes things even more difficult to deal with. On particularly bad days of fatigue issues I sometimes end up spending the day in and out of bed or in front of the TV. In my case these days will affect my mental state as I will feel that a day has been wasted. This is one factor which is very difficult to combat.
Anyone with arthritis or other joint issues will know about the sort of joint issues that can happen. In the case of a person with FM this can be debilitating as with any form of arthritis or other joint issue. In my case my main joint issues are to do with mobility issues. It is difficult to move as the joints feel like they have frozen up and are hard to move about. This is often closely associated with pain issues as well as the joint will also be painful to move. This is often the result of over-use of the joints. A perfect example of this is when I have been fencing constantly for an extended period of time. Anyone who has seen me fencing from a chair, this is usually the result of me having worked myself too hard previously or having some other joint issue at the time. Due to this there is also a distinct ability reduction and this leads to frustration, especially in my case. This can also be associated with a semi-mental issue which will be described in the next part.
One of the reasons why FM is so oftenly thought to be primarily a mental issue best fixed with anti-depressants is the presence of depression. The problem is that often while the depression is present it can be associated more with the change in circumstances due to the condition. Depression in my case is a factor and one of the hardest ones to fight against. This often leads to a high level of frustration in my case.
Memory issues in my case are associated with things such as forgetting simple things. On those days if it is not written down somewhere it simply does not happen. I also have some rather large gaps in my memory of things I just can't remember and this does not help either. Needless to say this can lead to a high level of frustration.
One of the reasons why I don't like public speaking is due to the speech issues that I have associated with FM. The words sometimes do not come out the way that they are supposed to, or is some circumstances, they just don't happen. This can even be when I am simply trying to read off something. Needless to say there are communication issues associated.
One mental issue which is closely associated to the physical ones is when the motor-neurones are not working properly. This can lead to co-ordination issues. I have had days where it is so bad I can't even butter bread. Sometimes it is just the messages do not get through, or they get through and do not stop. On bad days I am not allowed near glass as I have almost crushed a glass in my hand. I used to have a plastic glass with stress fractures in it from these bad days.
This is a brief description of how FM affects me in my everyday life. It is not designed to be here so I can get sympathy, far from it. The purpose of this is so that these issues are better understood by those reading this blog so that they can understand what goes on in my case. As stated the degree to which FM can affect the individual is often random depending on the day, and is a case by case basis. Some people will be affected less and some people will be affected more. It is important that these symptoms are recognised and then dealt with by the person with the condition. In some cases they can and in some they cannot. While sympathy is great and appreciated, empathy is more what the aim should be, this is far more useful to the person with the condition. Dealing with the issues is a subject for another blog.
Cheers,
Henry.
How fibromyalgia (FM) affects the particular person is personal in many ways. Not all people with the condition are affected in the same ways or to the same degree. In my case it is usually, if I can actually use that word, associated with four main areas. These are very much interconnected as some physical effects are associated with mental effects. Not all of them will happen at the same time, though on particularly bad days they can. In my particular case I have some good days and some bad days. Unfortunately due to the condition itself it can be very difficult to pick what the next day will be like. The symptoms that I have in particular have been described previously and an explanation of the impact of these will be described in very general terms.
In the case of most of my issues there are certain trigger mechanisms which can result in a bad day happening. A change in weather, or changeable weather affects me quite a bit. Cold weather is worse, but where warm weather is changeable it can be just as bad. Over-working myself is a definite trigger. If I work myself hard for a day or several days in a row, this tends to build up and create a problem. There are also some psychological effects which can affect my physical state. If I have a particularly stressful time due to some particular occurrence, this can lead to physical symptoms manifesting resulting in a bad day.
One of the issues which I have is a lack of sleep, or good sleep as the case may be. What happens is that sleep is interrupted by pain or other issues resulting in bad sleep, or a lack of deep sleep results in the body being inadequately rested. Some particularly bad days even if I have upwards of eight or even ten hours sleep, because it is not particularly good or deep the result is still the same if I had a lack of sleep. A lack of sleep or quality sleep as the case may be will result in an increase in fatigue and some of the mental issues that will be described. The lack of deep sleep results in a lack of dreams which can affect mental issues also this can be a particular problem over long periods of time and is usually triggered by an increase in stress.
Fatigue is one of those things that all people with FM get to some varying degree. Everyone feels tired and this is usually due to a lack of nourishment or sleep and can be remedied by eating or getting some sleep. In the case of a person with FM even these solutions will sometimes be ineffective. This fatigue is long-lasting and can sometimes last a full day or even multiple days in a row. This will affect a person's mental state. In my case it makes it difficult to think properly or clearly. This particular factor, in my case can also increase my pain levels which makes things even more difficult to deal with. On particularly bad days of fatigue issues I sometimes end up spending the day in and out of bed or in front of the TV. In my case these days will affect my mental state as I will feel that a day has been wasted. This is one factor which is very difficult to combat.
Anyone with arthritis or other joint issues will know about the sort of joint issues that can happen. In the case of a person with FM this can be debilitating as with any form of arthritis or other joint issue. In my case my main joint issues are to do with mobility issues. It is difficult to move as the joints feel like they have frozen up and are hard to move about. This is often closely associated with pain issues as well as the joint will also be painful to move. This is often the result of over-use of the joints. A perfect example of this is when I have been fencing constantly for an extended period of time. Anyone who has seen me fencing from a chair, this is usually the result of me having worked myself too hard previously or having some other joint issue at the time. Due to this there is also a distinct ability reduction and this leads to frustration, especially in my case. This can also be associated with a semi-mental issue which will be described in the next part.
One of the reasons why FM is so oftenly thought to be primarily a mental issue best fixed with anti-depressants is the presence of depression. The problem is that often while the depression is present it can be associated more with the change in circumstances due to the condition. Depression in my case is a factor and one of the hardest ones to fight against. This often leads to a high level of frustration in my case.
Memory issues in my case are associated with things such as forgetting simple things. On those days if it is not written down somewhere it simply does not happen. I also have some rather large gaps in my memory of things I just can't remember and this does not help either. Needless to say this can lead to a high level of frustration.
One of the reasons why I don't like public speaking is due to the speech issues that I have associated with FM. The words sometimes do not come out the way that they are supposed to, or is some circumstances, they just don't happen. This can even be when I am simply trying to read off something. Needless to say there are communication issues associated.
One mental issue which is closely associated to the physical ones is when the motor-neurones are not working properly. This can lead to co-ordination issues. I have had days where it is so bad I can't even butter bread. Sometimes it is just the messages do not get through, or they get through and do not stop. On bad days I am not allowed near glass as I have almost crushed a glass in my hand. I used to have a plastic glass with stress fractures in it from these bad days.
This is a brief description of how FM affects me in my everyday life. It is not designed to be here so I can get sympathy, far from it. The purpose of this is so that these issues are better understood by those reading this blog so that they can understand what goes on in my case. As stated the degree to which FM can affect the individual is often random depending on the day, and is a case by case basis. Some people will be affected less and some people will be affected more. It is important that these symptoms are recognised and then dealt with by the person with the condition. In some cases they can and in some they cannot. While sympathy is great and appreciated, empathy is more what the aim should be, this is far more useful to the person with the condition. Dealing with the issues is a subject for another blog.
Cheers,
Henry.
Saturday, November 7, 2009
How was I diagnosed?
Greetings,
Now that FM has been discussed as to what it exactly is, it is now time to start examining it from my own personal point of view. I think that the best place to start is about how I was diagnosed. This is a topic which will go into a little of my own medical history in order to properly explain the situation. It will also describe some of the issues that I have had due to a misunderstanding of this particular condition and things associated with this.
I have a rather long history of joint issues. I have always been rather tall and also underweight. This has more or less caused some of the other issues which have been associated with my condition. When I was in my early teens, my shoulder started to be sore, what would eventually happen was that I was diagnosed with shingles. It has a short on-set time and is quite painful. It attacks the nerves and causes pain whenever the affected joints are moved. This spread down my left arm to my hand. After a couple of weeks it cleared up with the help of medication.
I have been passed from specialist to specialist to deal with various issues that I had. One did an examination of my joint issues that I had been having. I was put through a series of tests to find out that I had some of the elements of Marfans Syndrome. This can be serious, but in my case it was used as more of an explanation for other things. This condition affects the connective tissues. Most of the people who grow to above average height actually have this condition, and excessive growth is one of the effects of the condition. There was also some discussion about my growing pains, essentially low level pain in my joints associated with growing.
The first real joint issue that I was diagnosed with was Patella Melanasia. This is a roughening of the back of the knee-cap which can cause some pain. I had always been an active sort of person and played sport during both the summer and winter seasons. I also rode my bike quite a lot and this was actually the result of doing all of these things all combined together. The issues that I have described give a background to the various issues that I have had with my joints and goes to explain some of the reasons why it would take so long for me to actually be diagnosed with Fibromyalgia.
In 1995, I was participating in a TAFE course which revolved around doing office work. While I was typing one day I noticed that I was getting pain through my wrists and fingers. I thought it was just because I had over-worked myself on that particular day. I rested my hands over the weekend and came back on Monday. The issue did not go away and I once again started to get pains through my hands and wrists. I went to my doctor at the time and explained the issues that I was having. He examined my hands and wrists. There was no obvious swelling in them at all. He put it down to being Carpal Tunnel Syndrome. He gave me some anti-inflammatories to take to see if that would solve the problem.
The anti-inflammatories did not help and actually made things worse as I they caused an allergic reaction and stomach pains associated with them. We tried various different anti-inflammatories over the next couple of weeks to find that none of them would help the problem and all had the same side-effect. The next on the list was cortisone injections, these actually worked for a little while and gave some improvement, but the level of relief was not sufficient to be a solution. I would actually have one day of pain from the injection itself, one day of relief and then the pain would come back. Not an adequate solution by any stand-point. I had to drop out of TAFE due to the amount of sick-days that I was having also.
I was tested for Ross River Fever, this came back negative. This meant that the two prime causes of this sort of issue were knocked off the list. I was also tested for Glandular Fever, this also came back negative. I was sent along to the physiotherapy department at the local hospital to see if they could find anything to help me. Some of it helped, but not for any extended period of time. The avenues were being closed off fast and it was becoming quite a concern for me.
My mother arranged for me to have an appointment with a specialist in Brisbane. My doctor wrote the referral so this could happen. I was hoping that some answers may be found through this appointment. I turned up at the appropriate time and saw the specialist. We had a long talk about what was going on and the things that we had tried. I was then put through a series of tests which would eliminate various things. The results would all come up either inconclusive or negative. What would come out of this appointment was for the specialist to say that it was not all in my head and there was something that was wrong. The problem with this was that he had no diagnosis for me, so I was back in the same place, more or less. At least I knew that there was something wrong and it wasn't all in my head.
In 1996, I was enroled to go to the University of Southern Queensland. With no answers and various issues with my health cropping up and being annoying. I decided to change to one of the doctors at the university medical centre. I had also noticed at this point in time that I was feeling tired a lot. I put this down to various other factors. I had a discussion with the Disability Support Officer about my condition and she said that there was some things that she could do to help, I was relieved at that. My workload was reduced and my lecturers and tutors were informed about my condition.
I had a few appointments with the doctor at the University and she put me on anti-depressants in order to assist with my health. We also tried a couple of different painkilers to help with the pain. The painkillers simply did not work and I started to get an adverse reaction to the anti-depressants. They started to change my personality quite a bit. This was not for the positive I can tell you. Eventually it was noticed that things were just not going according to what they should. I eventually got off the anti-depressants and went back to my original doctor. In 2000, he made an appointment for me to see a Rheumatologist at the hospital. I was not particularly optimistic at that point in time.
I turned up to the appointment expecting to be churned through and told exactly the same thing I had last time I went to see a specialist. He had a look at my referral, had a chat with me and did a basic examination. He then ordered what I can only describe as a battery of tests. For the next week I was turning up to get X-rays, blood tests, and scans of every type. The one I remember most was the bone scan. They inject you with a dose of barium in order to dye the bones and then ask you to come back in a couple of hours. Conveniently I had a friend around the corner so I spent some time with her. By the time the couple of hours were up I was feeling really tired. I had the scan and they sent me home. I began to walk but began to feel really tired so went back to my friend's place. I slept there for about six hours before getting a lift home.
The stack of results arrived back at the specialist in time for me to have my appointment. I was expecting to get no answers whatsoever. The first part was right, all of the tests came back negative. I was told this and immediately felt worse. Then the doctor turned around and asked me some more questions, and had a think. About five minutes later he said he had a diagnosis and it was fibromyalgia. Well, finally I had a name for this problem. Things were looking up. He prescribed me amitrypiline for the pain and also because it was an anti-depressant. He also gave me a little documentation about the illness.
I went home and had my first pill. About an hour later I was feeling really tired so went to bed. I would not get up again until three days later. I slept like I had never slept before. After sleeping I got up again and my flatmate said I looked like a zombie. There was no pain and this was good, but I could not stay focussed. I tried this medication for the next couple of weeks with the same result everytime I took it. This was not particularly healthy for my university course so I decided to stop taking them. I moved to Brisbane once my university course had ended and I graduated.
In 2001, I started having issues again so went and saw a doctor at Toowong. He wrote me a medical certificate for the University as I had started Honours. The same symptoms came back so he sat down with me and said I had a choice to make, either continue on with my current path or actually sit down and start working on it. I took the second option, we tried a bunch of medications and finally found some that actually worked for me. This became an effective medication regime and one that I would mostly stick with until now, except for a couple of minor changes. The result of this was that the symptoms finally began to stablilise and I learnt how to live with the condition.
Over the past years, there have been good days for me and also some really shocking ones as well. I was eventually put on a Disability Support Pension once the symptoms had stabilised. All in all I have had a victory and am now able to do much more than I could before. I still have my exceptionally good days and also my days where getting out of bed sounds like a bad option. The important thing is that I now have doctor who is willing to go out of his way to help me and this has been a great help. The end of the story is that with the diagnosis and the right doctor I am now able to do a lot more than I could before. Yes, I do still get my bad days, but I can now deal with them better as I know what is going on and that things will get better again.
Cheers,
Henry.
Now that FM has been discussed as to what it exactly is, it is now time to start examining it from my own personal point of view. I think that the best place to start is about how I was diagnosed. This is a topic which will go into a little of my own medical history in order to properly explain the situation. It will also describe some of the issues that I have had due to a misunderstanding of this particular condition and things associated with this.
I have a rather long history of joint issues. I have always been rather tall and also underweight. This has more or less caused some of the other issues which have been associated with my condition. When I was in my early teens, my shoulder started to be sore, what would eventually happen was that I was diagnosed with shingles. It has a short on-set time and is quite painful. It attacks the nerves and causes pain whenever the affected joints are moved. This spread down my left arm to my hand. After a couple of weeks it cleared up with the help of medication.
I have been passed from specialist to specialist to deal with various issues that I had. One did an examination of my joint issues that I had been having. I was put through a series of tests to find out that I had some of the elements of Marfans Syndrome. This can be serious, but in my case it was used as more of an explanation for other things. This condition affects the connective tissues. Most of the people who grow to above average height actually have this condition, and excessive growth is one of the effects of the condition. There was also some discussion about my growing pains, essentially low level pain in my joints associated with growing.
The first real joint issue that I was diagnosed with was Patella Melanasia. This is a roughening of the back of the knee-cap which can cause some pain. I had always been an active sort of person and played sport during both the summer and winter seasons. I also rode my bike quite a lot and this was actually the result of doing all of these things all combined together. The issues that I have described give a background to the various issues that I have had with my joints and goes to explain some of the reasons why it would take so long for me to actually be diagnosed with Fibromyalgia.
In 1995, I was participating in a TAFE course which revolved around doing office work. While I was typing one day I noticed that I was getting pain through my wrists and fingers. I thought it was just because I had over-worked myself on that particular day. I rested my hands over the weekend and came back on Monday. The issue did not go away and I once again started to get pains through my hands and wrists. I went to my doctor at the time and explained the issues that I was having. He examined my hands and wrists. There was no obvious swelling in them at all. He put it down to being Carpal Tunnel Syndrome. He gave me some anti-inflammatories to take to see if that would solve the problem.
The anti-inflammatories did not help and actually made things worse as I they caused an allergic reaction and stomach pains associated with them. We tried various different anti-inflammatories over the next couple of weeks to find that none of them would help the problem and all had the same side-effect. The next on the list was cortisone injections, these actually worked for a little while and gave some improvement, but the level of relief was not sufficient to be a solution. I would actually have one day of pain from the injection itself, one day of relief and then the pain would come back. Not an adequate solution by any stand-point. I had to drop out of TAFE due to the amount of sick-days that I was having also.
I was tested for Ross River Fever, this came back negative. This meant that the two prime causes of this sort of issue were knocked off the list. I was also tested for Glandular Fever, this also came back negative. I was sent along to the physiotherapy department at the local hospital to see if they could find anything to help me. Some of it helped, but not for any extended period of time. The avenues were being closed off fast and it was becoming quite a concern for me.
My mother arranged for me to have an appointment with a specialist in Brisbane. My doctor wrote the referral so this could happen. I was hoping that some answers may be found through this appointment. I turned up at the appropriate time and saw the specialist. We had a long talk about what was going on and the things that we had tried. I was then put through a series of tests which would eliminate various things. The results would all come up either inconclusive or negative. What would come out of this appointment was for the specialist to say that it was not all in my head and there was something that was wrong. The problem with this was that he had no diagnosis for me, so I was back in the same place, more or less. At least I knew that there was something wrong and it wasn't all in my head.
In 1996, I was enroled to go to the University of Southern Queensland. With no answers and various issues with my health cropping up and being annoying. I decided to change to one of the doctors at the university medical centre. I had also noticed at this point in time that I was feeling tired a lot. I put this down to various other factors. I had a discussion with the Disability Support Officer about my condition and she said that there was some things that she could do to help, I was relieved at that. My workload was reduced and my lecturers and tutors were informed about my condition.
I had a few appointments with the doctor at the University and she put me on anti-depressants in order to assist with my health. We also tried a couple of different painkilers to help with the pain. The painkillers simply did not work and I started to get an adverse reaction to the anti-depressants. They started to change my personality quite a bit. This was not for the positive I can tell you. Eventually it was noticed that things were just not going according to what they should. I eventually got off the anti-depressants and went back to my original doctor. In 2000, he made an appointment for me to see a Rheumatologist at the hospital. I was not particularly optimistic at that point in time.
I turned up to the appointment expecting to be churned through and told exactly the same thing I had last time I went to see a specialist. He had a look at my referral, had a chat with me and did a basic examination. He then ordered what I can only describe as a battery of tests. For the next week I was turning up to get X-rays, blood tests, and scans of every type. The one I remember most was the bone scan. They inject you with a dose of barium in order to dye the bones and then ask you to come back in a couple of hours. Conveniently I had a friend around the corner so I spent some time with her. By the time the couple of hours were up I was feeling really tired. I had the scan and they sent me home. I began to walk but began to feel really tired so went back to my friend's place. I slept there for about six hours before getting a lift home.
The stack of results arrived back at the specialist in time for me to have my appointment. I was expecting to get no answers whatsoever. The first part was right, all of the tests came back negative. I was told this and immediately felt worse. Then the doctor turned around and asked me some more questions, and had a think. About five minutes later he said he had a diagnosis and it was fibromyalgia. Well, finally I had a name for this problem. Things were looking up. He prescribed me amitrypiline for the pain and also because it was an anti-depressant. He also gave me a little documentation about the illness.
I went home and had my first pill. About an hour later I was feeling really tired so went to bed. I would not get up again until three days later. I slept like I had never slept before. After sleeping I got up again and my flatmate said I looked like a zombie. There was no pain and this was good, but I could not stay focussed. I tried this medication for the next couple of weeks with the same result everytime I took it. This was not particularly healthy for my university course so I decided to stop taking them. I moved to Brisbane once my university course had ended and I graduated.
In 2001, I started having issues again so went and saw a doctor at Toowong. He wrote me a medical certificate for the University as I had started Honours. The same symptoms came back so he sat down with me and said I had a choice to make, either continue on with my current path or actually sit down and start working on it. I took the second option, we tried a bunch of medications and finally found some that actually worked for me. This became an effective medication regime and one that I would mostly stick with until now, except for a couple of minor changes. The result of this was that the symptoms finally began to stablilise and I learnt how to live with the condition.
Over the past years, there have been good days for me and also some really shocking ones as well. I was eventually put on a Disability Support Pension once the symptoms had stabilised. All in all I have had a victory and am now able to do much more than I could before. I still have my exceptionally good days and also my days where getting out of bed sounds like a bad option. The important thing is that I now have doctor who is willing to go out of his way to help me and this has been a great help. The end of the story is that with the diagnosis and the right doctor I am now able to do a lot more than I could before. Yes, I do still get my bad days, but I can now deal with them better as I know what is going on and that things will get better again.
Cheers,
Henry.
Wednesday, November 4, 2009
What is Fibromyalgia?
Greetings,
The first question that really needs to be answered in this particular discussion is "What is Fibromyalgia?" Now, there are a lot of definitions to look at and information can be found all over the place. In order to make this rather long process a little less painful, I will be using both some information from various hand-outs I was given and also some of my own personal experiences. Hopefully this will mean that a decent sort of description of this particular illness will result from the combination of these two.
Ok, where to start. Needless to say, I have a lot of information about this particular subject. My mother was most helpful once I was diagnosed with fibromyalgia (FM) and gave me a large envelope filled with hand-outs about this particular issue. It has been most useful for me. Where to start?
The first question that really needs to be answered in this particular discussion is "What is Fibromyalgia?" Now, there are a lot of definitions to look at and information can be found all over the place. In order to make this rather long process a little less painful, I will be using both some information from various hand-outs I was given and also some of my own personal experiences. Hopefully this will mean that a decent sort of description of this particular illness will result from the combination of these two.
Ok, where to start. Needless to say, I have a lot of information about this particular subject. My mother was most helpful once I was diagnosed with fibromyalgia (FM) and gave me a large envelope filled with hand-outs about this particular issue. It has been most useful for me. Where to start?
"FM is a "Chronic invisible illnesses". It isn't just a form of muscular rheumatism. It's actually a type of neurotransmitter dysfunction." (Dr D. Starlanyl, "A Guide for Relatives and Companions)
Well what does this all mean? What it means is that FM is not just a form of rheumatoid arthritis it actually has a great deal to do with what is going on in the brain. Neurotransmitters are what the brain uses to communicate with the rest of the body and tell it what to do. In the FM patient it means that something has gone wrong here and it is telling the body the wrong things. This causes all sorts of issues in the body. It has also be described as such;
"Fibromyalgia is a common condition characterized by diffuse musculoskeletal pain and fatigue. The syndrome is defined by the presence of musculoskeletal tender points on physical examination. Additionally, persons with this syndrome have a high incidence of headaches, ocular and vestibular complaints, parasthesias, esophageal dysmotility, "allergic" symptoms, Irritable Bowel Syndrome, genitourinary symptoms and affective disorders." (Dr D. Clauw, "Fibromyalgia: More Than Just a Musculoskeletal Disease)
More medical talk for those of you who understand all of this, that is great. To put it in more layman's terms, I have come up with a definition of my own. Take all of the fatigue associated with Chronic Fatigue Syndrome and combine it with the joint issues of Rheumatoid Arthritis, and then throw in some other issues as well and you will have a general idea about what FM is. The problem with the "other issues" that I have described is that these can be attributed to a lot of other issues, and this can be one of the most annoying factors in this particular illness.
In essence FM from my point of view is a combination of all sorts of different symptoms which happen to be present in the individual and generally make their life a great more difficult than it could be. For doctors who are unfamiliar with this particular condition it can cause all sorts of problems as diagnosis for it can be problematic to say the least. Often people with undiagnosed FM are sent off to psychologists and psychiatrists as the pain and fatigue has a random on-set and effect and it is assumed that it is all in the patient's mind. Admittedly, there are elements of FM which affect mood and so forth, but it is also a physical condition. With regard to this, it is not particularly common as it only affects between 2 - 6% of the population including children.
There is a long list of symptoms which are associated with FM and not all of the people with this illness actually get all of them. This list includes some broad categories and also some specific symptoms which are associated with FM when found in combination with other ones. This long list of symptoms, which can overlap with other conditions, and often do, makes diagnosis particularly difficult. In my case, I suffer from the following symptoms:
Fatigue,
Cognitive function problems including: calculation difficulties, memory disturbances frequently saying the wrong word,
Psychological Problems including: depression, anxiety,
Other Nervous System Problems including: sleep disturbance, headaches, changes in visual acuity, numbness or tingling feelings, burning sensations, lightheadedness, feeling "spaced out", intolerance of bright lights, enhancement of medical effects, ringing in the ears
Recurrent sore throat
Severe nasal and other allergies
Muscle and joint aches
Mottled skin appearance
Muscle spasms
Chest pain
Dry eyes and mouth
Cold hands and feet
On top of my list there is more than a dozen other symptoms which can be associated with FM. As can be seen by the breadth of my list of symptoms, the diagnosis of this condition is of a particular problem. For many years this particular condition was not recognised by the medical profession, and in some cases is still controversial. For governments, recognition of this particular condition is also problematic and many assistance agencies do not recognise it as a credible disability due to its random nature.
The purpose of this particular blog has been to discuss FM as a condition and attempt to give some sort of idea about what it is. One of the biggest problems with this particular task is that the symptoms are so widespread and differing that only really an approximation of what it is, is possible. I can honestly say that until I was diagnosed with FM I had never heard of the condition. A great deal of information is available about FM from many sources and needless to say the Internet has a fair amount the Wikipedia has its own page devoted to FM (http://en.wikipedia.org/wiki/Fibromyalgia). Some of the problems associated with the diagnosis of FM and also some of the opinions about this condition will be discussed in following blogs. Hopefully this blog has given some useful information about this particular condition for the readers, and also more of an understanding about it.
Cheers,
Henry.
Introduction
Greetings,
I have decided to take it upon myself to write a blog about living with fibromyalgia. This will be a blog from a very personal point of view as I will be describing my own experiences with this particular problem. I will be drawing from my own experiences and also some of the information which is out there about this particular issue. My intention for doing this is for information purposes so that a greater understanding of this particular issue may be had.
I will admit that this will be a little haphazard and will take more of the form of a typical blog of the diary kind. I will be attempting to put things on here on a regular basis, but there can really be no guarantees. It will come down more to when I get inspired to write about the particular subject rather than anything which is horribly regular. If this fills in some information for people about this particular problem and achieves a greater understanding for myself and other sufferers then I have achieved my goal.
Cheers,
Henry.
I have decided to take it upon myself to write a blog about living with fibromyalgia. This will be a blog from a very personal point of view as I will be describing my own experiences with this particular problem. I will be drawing from my own experiences and also some of the information which is out there about this particular issue. My intention for doing this is for information purposes so that a greater understanding of this particular issue may be had.
I will admit that this will be a little haphazard and will take more of the form of a typical blog of the diary kind. I will be attempting to put things on here on a regular basis, but there can really be no guarantees. It will come down more to when I get inspired to write about the particular subject rather than anything which is horribly regular. If this fills in some information for people about this particular problem and achieves a greater understanding for myself and other sufferers then I have achieved my goal.
Cheers,
Henry.
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