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.
Showing posts with label medication. Show all posts
Showing posts with label medication. Show all posts
Saturday, March 26, 2016
Saturday, July 18, 2015
Probably a Winter Thing...
Greetings,
Sorry, it has been so long since I have posted. More to the point, sorry it has been so long since I have had any real inspirations about fibromyalgia (FM). This one just came to me as I was off to the chemist again today.
Now this is probably a winter thing, but I have noticed that every winter my medication for takes a jump up. I am not just talking pain-killers, be they short-term or regularly taken, I am talking the whole lot of them. Seems that the cold and the general changeable weather really gets to me, so every winter at the beginning, off I go to the doctor and we increase the level of medications to my "toleration" point.
I could feasibly take more, but that would impinge on my research and other activities which I like, so instead I take enough to take the edge off so I can function reasonably. This is a discussion the doctor and I had and have had many times. Yes, more medication would make me have less pain but I would have less control of my functions and that would annoy me, which would be worse than the pain in my books, so the negotiations continue.
The other thing that I have noticed, and this is one that I am very wary of, that is that the medications only increase, they never decrease. This means at some stage the body gets to used to them and thus requires more. In essence it means that certain drugs become less and less useful. We all need to be careful of this one. No one wants to get to a stage where nothing works, or the medications required to do anything are so extreme that they are excessively hard to get. Thus I only increase my medications when I have to. Of course being a stubborn sod, sometimes that hint needs to come from others.
Anyway, I suppose the point here is that we all should keep and eye on how much of what we are putting in and just how effective it really is. Like I said it is probably only because it is winter here in Australia and I am noticing it more, does not mean that it is less important.
Cheers,
Henry.
Sorry, it has been so long since I have posted. More to the point, sorry it has been so long since I have had any real inspirations about fibromyalgia (FM). This one just came to me as I was off to the chemist again today.
Now this is probably a winter thing, but I have noticed that every winter my medication for takes a jump up. I am not just talking pain-killers, be they short-term or regularly taken, I am talking the whole lot of them. Seems that the cold and the general changeable weather really gets to me, so every winter at the beginning, off I go to the doctor and we increase the level of medications to my "toleration" point.
I could feasibly take more, but that would impinge on my research and other activities which I like, so instead I take enough to take the edge off so I can function reasonably. This is a discussion the doctor and I had and have had many times. Yes, more medication would make me have less pain but I would have less control of my functions and that would annoy me, which would be worse than the pain in my books, so the negotiations continue.
The other thing that I have noticed, and this is one that I am very wary of, that is that the medications only increase, they never decrease. This means at some stage the body gets to used to them and thus requires more. In essence it means that certain drugs become less and less useful. We all need to be careful of this one. No one wants to get to a stage where nothing works, or the medications required to do anything are so extreme that they are excessively hard to get. Thus I only increase my medications when I have to. Of course being a stubborn sod, sometimes that hint needs to come from others.
Anyway, I suppose the point here is that we all should keep and eye on how much of what we are putting in and just how effective it really is. Like I said it is probably only because it is winter here in Australia and I am noticing it more, does not mean that it is less important.
Cheers,
Henry.
Monday, July 15, 2013
Some Things I Have Learned Having Fibromyalgia
Greetings,
This post was inspired by one made by my sister. Ironically, I think I have written a lot of this separately in different blog articles, oh well...
1. Make a choice fight or don't. You can crawl up into a ball and reduce what you do. Or you can stand up and fight and keep or expand what you can. One of these is easy but leads down a much more restricted path, the other will be much more difficult but the benefit will be a much more involved life. This will require activity and it will take time. Needless to say I am a fighter.
2. You are in it for the long-haul. There are not quick-fixes for this one. It is not something you can go to a doctor/surgeon/specialist and then days/months/years down the track it is all fixed. This is one which is going to stick around for the rest of your life. So you need to think of the long-term rather than the short-term, and this means the long-term effects of what you are doing with yourself (See "1").
3. You will have to explain what fibromyalgia is to people a lot. Giving a medical definition will be a waste of time so the best thing is to give a general idea of what the symptoms are like. I tend to describe FM as the worst elements of arthritis and chronic fatigue.
4. People will not understand the pain you experience, even others with fibromyalgia. Everybody's pain is different and not everyone will have the same symptoms as you. Even if they do have the exact same symptoms as you the pain will be difficult to describe. This goes for people in the medical profession as well.
5. You will get asked where does it hurt, a lot. Being able to pin-point where you have pain is a great advantage, for the most part you will not. In response to this question for the most part it would be easier to ask where doesn't it hurt, though that can change at a moment's notice. On a pain diagram it is easier sometimes to simply circle the whole thing, or colour the lot in.
6. You will have to explain your existence a lot. People will not understand how you can do somethings and not others. This is one I get asked a lot. However, do not feel you need to explain yourself, for some people it won't matter what you say, they will never understand and they will never believe you. These people are best to be left behind as they will always second-guess you.
7. Don't be afraid to push your limits. If you want to extend yourself then you need to challenge your own boundaries. You will be surprised about what you can accomplish.
8. Expect to fail every now and then. When you take the advice in "7" you will find that your boundaries are sometimes more restrictive than you thought. The important thing is not to see the failure as the end. Get up, brush yourself off and have another go, and another, and another until you do get where you want to be.
9. Take a break. Everybody needs them. Your body will tell you when to take the break one way or another, but most often it will tell you by causing you pain. In my case it is usually after I hit the bottom, but I do rest.
10. Expect some people to walk away. This is because they cannot understand what you are going through and this frightens them. It is during these times that you will find people who are really your friends.
11. Some people will never believe you. This is regardless of what you tell them or what evidence you present. These people will always think that there is nothing wrong and it is all a show. Best advice for these people is to stay away from them as best you can.
12. Find a good doctor. I do not mean a doctor with lots of qualifications and recommendations. I mean a doctor who you can deal with. A doctor who really wants to understand and help you with what is going on with you. More to the point a doctor who actually does understand that there is something going wrong. If you have to spend your time convincing your doctor that there is something wrong and it is not all in your head you need to find a better doctor.
13. It may get better, or it may get worse. This is one of the frightening things about FM, you may get worse or not, you don't know. The only thing to do in this situation is to do what you can help to prevent it from getting worse. It may not work but give it your best and you never know it might get better or at least stabilise things (See "1").
14. Expect the random. What? How can you expect the random? Expect that sometimes your fibromyalgia will come up and bite you on the butt when you least expect it, and most often when you least want it to. In this you need to be prepared to decline, to reschedule, and to miss out. Sometimes it is better to sit out and miss things than to push yourself too far. Sometimes it will be worth it to push yourself, pick your times and your battles. In my case I have missed events of various kinds in order to do this, it is not easy to do.
15. Do not be afraid to be a burden, but do not expect to be one. There are times when you will need help and when it is offered, take it. However, do not expect people to do things for you just because of your condition, you need to give them a reason to want to care. You need to be giving something back for people to want to go out of their way for you. I pull my weight where I can, or at least try to and try to give something back where I can from what I can do.
16. Ask for help, it is not a sign of weakness. There are times when you will need help, do not be afraid to ask for it. Do not expect people to intuitively know when you need help with things. You will need to ask for help, do not simply expect it to happen without asking. More to the point be grateful of the help, especially because it most often comes when you most need it. One of the hardest lessons to learn for me, and to tell the truth, I am still learning it.
17. Do not expect help, even from those you should. There are times, and most times, when you will have to do this thing on your own. This means you are just going to have to battle through yourself and do what you can when you can. There will be times when you will expect help and it simply will not happen, sometimes even when you ask.
18. People have their own lives. They can not always be around to help you or be there for you. You need some self-sufficiency. Sometimes people's lives will be more important than helping you with yours, this is something you simply have to accept and move on.
19. If you want to do something, do it. Find what you want to do and see if you can. Give things a go, you will only find out if you have a go. You never know you just might surprise yourself. Of course, keep your expectations real at the same time. Find a project, intellectual or physical (the best kinds have both) and go for it.
20. Don't believe everything that you read. You will find things which are contradictory to what has been written about the condition. In my case I have one word "caffeine". Supposedly it causes problems with fibromyalgia and thus I should stay away from it. I have found it useful. It helps cut through the "fog", it obviously wakes me up, and it gets the blood pumping. All of these things I have found to be a benefit rather than a problem.
21. You are much stronger than you know. You can battle through the hardest parts of this condition. You always have the strength to go on. There is always light at the end of the tunnel. Some days getting out of bed is a hardship, but I do it anyway. Small achievement I know, but a victory nonetheless. If you find these victories in your life you will find that you can do a lot of things and each achievement will spur you on to the next. Getting out of bed gets the ball rolling. Sure it is hard, and it is easy to go back, but always look forward. Get one thing done today and it is an achievement, you never know you could be aimed at two, or more tomorrow.
22. Look for understanding not sympathy. The former is more difficult to achieve than the latter and is worth more. Through understanding a person can then begin to understand when you need help and how this is best delivered. Sympathy is like a pat on the head, nice but does not get you anywhere. Understanding is a long-term project usually only undertaken by those who really care and want to know. Needless to say if you go looking for it you can get a lot of sympathy, but understanding is a lot harder to achieve. Oh, and after a while too much sympathy gained off a single individual can turn into contempt, which is exactly what you don't want.
23. Insomnia can be both a curse and a gift. In the long-term insomnia is not good for you and will cause you problems, however it can allow you to achieve things as well. A short dose of insomnia in one particular instance allowed me to get further in a project than I would have otherwise. Use the over-active brain to do something with. Write it all down, even if it is gobbledigook.
24. Medication needs to be managed. Well-managed medication can be a boon. Side-effects can be a killer so these need to be managed as well. More to the point you need to realise when you actually need it. I am horrible with regard to this as concerns pain-killers. I hate taking them due to the side-effects and my fear of becoming dependent on them. I will do anything I can to avoid having to take a pain-killer. I take them when I need them, and not before. The rest of my medication is, for the most part, pretty good, even if it is somewhat limiting on certain aspects.
25. There is always another twist. There is always something around the corner that you will not expect. In my case this was sarcoidosis and osteoporosis. Dealing with both, things are looking good. These things will complicate what is going on. For the most part they do not even have to be directly associated with the FM, but they will have their effects. Look at it simply as another puzzle to solve or manage and move on.
26. Your life is a puzzle. Yes, I am a walking rubix cube. There are many moving parts and the bits do not always fit the way that they are supposed to. The fibromyalgia will complicate things for you and the symptoms will be random a lot of the time. However, we all have triggers which we can do our best to avoid where we can. In my case I look at it all as a puzzle and making all of the bits fit properly results in me having a better life than before. It may not be perfect, but at least it will be better.
27. Being positive does help. Whether it is something chemical or just an outlook on life, being positive about things helps. If you are positive there is no hurdle which you cannot tackle. In my case I accept things for what they are and move on. Curling up in a ball and hiding only works so well for so long. Eventually you have to get up and do something. Worrying about stuff you can do nothing about does nothing but waste energy on things you could be doing something about.
28. Take greater joy in the things you can do than those you can't. There are things we all cannot do anymore thanks to FM. In my case I can no longer write or type for as long nor as fast as I used to be able to. So I focus more on the things that I can do, especially the ones where the ability to do this shocks people. Big one for me is fencing and this one not only shocks friends and family but also some in the medical profession as well.
29. You will get frustrated and annoyed. I am usually a reasonably calm and quiet sort of person. This illness drives me to distraction, especially when it says "Not today." for anything. In these times you need to accept that you are actually frustrated and annoyed, but also realise that while something may not be going according to plan, there are things you can do about it. I denied for the longest time that I had depression and I do have my ups and downs with regard to it. For the most part the cause of this can be firmly laid at the feet of fibromyalgia. It makes things really difficult at times but you have to accept these things as they are and then move through them. So you can't do what you planned today, push it to one side and do something else; then try again tomorrow.
30. Take hold of something which is yours and hold on to it. Pick one thing, one thing that you love doing and do your very best to hold on to that thing. For me that one thing is Renaissance martial arts, it is something I was doing before fibromyalgia and it is the one thing that keeps me going. When I mention fencing this is what I am talking about, not sport fencing but the fencing of the Renaissance period. I do it, I read about it, I research it. This is the one thing that keeps me going and the one thing I will never give in. Essentially you need something you love to challenge you and give you the victories to keep going.
Well, I have come up with 30 of them. No doubt I will think of some more later on and these I will either add to this in some form or some other method of recording them. You will notice that some of these will repeat themselves, well, that is just the way it is. Different lessons in each one of them though.
Cheers,
Henry.
This post was inspired by one made by my sister. Ironically, I think I have written a lot of this separately in different blog articles, oh well...
1. Make a choice fight or don't. You can crawl up into a ball and reduce what you do. Or you can stand up and fight and keep or expand what you can. One of these is easy but leads down a much more restricted path, the other will be much more difficult but the benefit will be a much more involved life. This will require activity and it will take time. Needless to say I am a fighter.
2. You are in it for the long-haul. There are not quick-fixes for this one. It is not something you can go to a doctor/surgeon/specialist and then days/months/years down the track it is all fixed. This is one which is going to stick around for the rest of your life. So you need to think of the long-term rather than the short-term, and this means the long-term effects of what you are doing with yourself (See "1").
3. You will have to explain what fibromyalgia is to people a lot. Giving a medical definition will be a waste of time so the best thing is to give a general idea of what the symptoms are like. I tend to describe FM as the worst elements of arthritis and chronic fatigue.
4. People will not understand the pain you experience, even others with fibromyalgia. Everybody's pain is different and not everyone will have the same symptoms as you. Even if they do have the exact same symptoms as you the pain will be difficult to describe. This goes for people in the medical profession as well.
5. You will get asked where does it hurt, a lot. Being able to pin-point where you have pain is a great advantage, for the most part you will not. In response to this question for the most part it would be easier to ask where doesn't it hurt, though that can change at a moment's notice. On a pain diagram it is easier sometimes to simply circle the whole thing, or colour the lot in.
6. You will have to explain your existence a lot. People will not understand how you can do somethings and not others. This is one I get asked a lot. However, do not feel you need to explain yourself, for some people it won't matter what you say, they will never understand and they will never believe you. These people are best to be left behind as they will always second-guess you.
7. Don't be afraid to push your limits. If you want to extend yourself then you need to challenge your own boundaries. You will be surprised about what you can accomplish.
8. Expect to fail every now and then. When you take the advice in "7" you will find that your boundaries are sometimes more restrictive than you thought. The important thing is not to see the failure as the end. Get up, brush yourself off and have another go, and another, and another until you do get where you want to be.
9. Take a break. Everybody needs them. Your body will tell you when to take the break one way or another, but most often it will tell you by causing you pain. In my case it is usually after I hit the bottom, but I do rest.
10. Expect some people to walk away. This is because they cannot understand what you are going through and this frightens them. It is during these times that you will find people who are really your friends.
11. Some people will never believe you. This is regardless of what you tell them or what evidence you present. These people will always think that there is nothing wrong and it is all a show. Best advice for these people is to stay away from them as best you can.
12. Find a good doctor. I do not mean a doctor with lots of qualifications and recommendations. I mean a doctor who you can deal with. A doctor who really wants to understand and help you with what is going on with you. More to the point a doctor who actually does understand that there is something going wrong. If you have to spend your time convincing your doctor that there is something wrong and it is not all in your head you need to find a better doctor.
13. It may get better, or it may get worse. This is one of the frightening things about FM, you may get worse or not, you don't know. The only thing to do in this situation is to do what you can help to prevent it from getting worse. It may not work but give it your best and you never know it might get better or at least stabilise things (See "1").
14. Expect the random. What? How can you expect the random? Expect that sometimes your fibromyalgia will come up and bite you on the butt when you least expect it, and most often when you least want it to. In this you need to be prepared to decline, to reschedule, and to miss out. Sometimes it is better to sit out and miss things than to push yourself too far. Sometimes it will be worth it to push yourself, pick your times and your battles. In my case I have missed events of various kinds in order to do this, it is not easy to do.
15. Do not be afraid to be a burden, but do not expect to be one. There are times when you will need help and when it is offered, take it. However, do not expect people to do things for you just because of your condition, you need to give them a reason to want to care. You need to be giving something back for people to want to go out of their way for you. I pull my weight where I can, or at least try to and try to give something back where I can from what I can do.
16. Ask for help, it is not a sign of weakness. There are times when you will need help, do not be afraid to ask for it. Do not expect people to intuitively know when you need help with things. You will need to ask for help, do not simply expect it to happen without asking. More to the point be grateful of the help, especially because it most often comes when you most need it. One of the hardest lessons to learn for me, and to tell the truth, I am still learning it.
17. Do not expect help, even from those you should. There are times, and most times, when you will have to do this thing on your own. This means you are just going to have to battle through yourself and do what you can when you can. There will be times when you will expect help and it simply will not happen, sometimes even when you ask.
18. People have their own lives. They can not always be around to help you or be there for you. You need some self-sufficiency. Sometimes people's lives will be more important than helping you with yours, this is something you simply have to accept and move on.
19. If you want to do something, do it. Find what you want to do and see if you can. Give things a go, you will only find out if you have a go. You never know you just might surprise yourself. Of course, keep your expectations real at the same time. Find a project, intellectual or physical (the best kinds have both) and go for it.
20. Don't believe everything that you read. You will find things which are contradictory to what has been written about the condition. In my case I have one word "caffeine". Supposedly it causes problems with fibromyalgia and thus I should stay away from it. I have found it useful. It helps cut through the "fog", it obviously wakes me up, and it gets the blood pumping. All of these things I have found to be a benefit rather than a problem.
21. You are much stronger than you know. You can battle through the hardest parts of this condition. You always have the strength to go on. There is always light at the end of the tunnel. Some days getting out of bed is a hardship, but I do it anyway. Small achievement I know, but a victory nonetheless. If you find these victories in your life you will find that you can do a lot of things and each achievement will spur you on to the next. Getting out of bed gets the ball rolling. Sure it is hard, and it is easy to go back, but always look forward. Get one thing done today and it is an achievement, you never know you could be aimed at two, or more tomorrow.
22. Look for understanding not sympathy. The former is more difficult to achieve than the latter and is worth more. Through understanding a person can then begin to understand when you need help and how this is best delivered. Sympathy is like a pat on the head, nice but does not get you anywhere. Understanding is a long-term project usually only undertaken by those who really care and want to know. Needless to say if you go looking for it you can get a lot of sympathy, but understanding is a lot harder to achieve. Oh, and after a while too much sympathy gained off a single individual can turn into contempt, which is exactly what you don't want.
23. Insomnia can be both a curse and a gift. In the long-term insomnia is not good for you and will cause you problems, however it can allow you to achieve things as well. A short dose of insomnia in one particular instance allowed me to get further in a project than I would have otherwise. Use the over-active brain to do something with. Write it all down, even if it is gobbledigook.
24. Medication needs to be managed. Well-managed medication can be a boon. Side-effects can be a killer so these need to be managed as well. More to the point you need to realise when you actually need it. I am horrible with regard to this as concerns pain-killers. I hate taking them due to the side-effects and my fear of becoming dependent on them. I will do anything I can to avoid having to take a pain-killer. I take them when I need them, and not before. The rest of my medication is, for the most part, pretty good, even if it is somewhat limiting on certain aspects.
25. There is always another twist. There is always something around the corner that you will not expect. In my case this was sarcoidosis and osteoporosis. Dealing with both, things are looking good. These things will complicate what is going on. For the most part they do not even have to be directly associated with the FM, but they will have their effects. Look at it simply as another puzzle to solve or manage and move on.
26. Your life is a puzzle. Yes, I am a walking rubix cube. There are many moving parts and the bits do not always fit the way that they are supposed to. The fibromyalgia will complicate things for you and the symptoms will be random a lot of the time. However, we all have triggers which we can do our best to avoid where we can. In my case I look at it all as a puzzle and making all of the bits fit properly results in me having a better life than before. It may not be perfect, but at least it will be better.
27. Being positive does help. Whether it is something chemical or just an outlook on life, being positive about things helps. If you are positive there is no hurdle which you cannot tackle. In my case I accept things for what they are and move on. Curling up in a ball and hiding only works so well for so long. Eventually you have to get up and do something. Worrying about stuff you can do nothing about does nothing but waste energy on things you could be doing something about.
28. Take greater joy in the things you can do than those you can't. There are things we all cannot do anymore thanks to FM. In my case I can no longer write or type for as long nor as fast as I used to be able to. So I focus more on the things that I can do, especially the ones where the ability to do this shocks people. Big one for me is fencing and this one not only shocks friends and family but also some in the medical profession as well.
29. You will get frustrated and annoyed. I am usually a reasonably calm and quiet sort of person. This illness drives me to distraction, especially when it says "Not today." for anything. In these times you need to accept that you are actually frustrated and annoyed, but also realise that while something may not be going according to plan, there are things you can do about it. I denied for the longest time that I had depression and I do have my ups and downs with regard to it. For the most part the cause of this can be firmly laid at the feet of fibromyalgia. It makes things really difficult at times but you have to accept these things as they are and then move through them. So you can't do what you planned today, push it to one side and do something else; then try again tomorrow.
30. Take hold of something which is yours and hold on to it. Pick one thing, one thing that you love doing and do your very best to hold on to that thing. For me that one thing is Renaissance martial arts, it is something I was doing before fibromyalgia and it is the one thing that keeps me going. When I mention fencing this is what I am talking about, not sport fencing but the fencing of the Renaissance period. I do it, I read about it, I research it. This is the one thing that keeps me going and the one thing I will never give in. Essentially you need something you love to challenge you and give you the victories to keep going.
Well, I have come up with 30 of them. No doubt I will think of some more later on and these I will either add to this in some form or some other method of recording them. You will notice that some of these will repeat themselves, well, that is just the way it is. Different lessons in each one of them though.
Cheers,
Henry.
Tuesday, July 2, 2013
The Continuing Saga...
Greetings,
About this time last night or whatever it was I wrote about my sleeping issue. Well, looks like it is continuing, much to my disgust. I mentioned I may be back with regard to this one, and here I am. So here's another ramble...
So, I relented last night and took the medication to induce me to go to sleep. That was about 3:20am or thereabouts. I figured a late to bed and early get up would fix things. Not the case unfortunately as I am here again. Why did I relent you ask? In a word, pain. My head started to throb and various bits and pieces of my body were on their way to locking up, so staying up was not a good idea. Unfortunately I think I am headed for the same last night.
Let me say "Thanks" to those who took some time to have a chat with me on FB last night. It was greatly appreciated. Nice to have a chat and fill in some hours while I figured out what I should do. I have almost no doubt that the same will happen tonight. At least I have nailed one of the reasons and it is pain. Weather-related pain. The wet weather and the cold are most definitely getting to me again. Not happy about that. Expected it, but still not happy.
Of course due to the crappy weather I was unable to go to training tonight also. So the exercise thing went out the window so the joints have been sedentary. I hope that Wednesday clears up enough for me to go to training that night. I really think that the two doses of exercise that I get at training really do help. I think it is partially due to the enjoyment, partially due to the increased heart-rate, and partially due to the inner-warmth generated due to the exercise. Whatever the cause/effect, it works and I need training at least twice a week for this to work. For those who are new to the blog, that would be fencing training.
Best idea I ever had with regard to my FM was taking up fencing some 20 years ago. I have not looked back. It provides me with motivation, exercise and more importantly something to focus my mind on. Sure I play some console games as well and that helps, but the holistic approach to the study of fencing, studying and doing it, fulfills both the mind and the body. There is so much to learn and that is awesome. I am not saying that it is the magic key, but I think it really helps. What helps is that I have had multiple medical practitioners agree with this assessment. If you can, maybe you should give it a go.
Anyway, the brain has pretty much run out of things to write at the moment. I will probably follow the same procedure as last night, go on FB and have a chat until the body says "No more" again. I know it is not a solution, but heck, it seems to be the thing to do at the moment.
Cheers,
Henry.
About this time last night or whatever it was I wrote about my sleeping issue. Well, looks like it is continuing, much to my disgust. I mentioned I may be back with regard to this one, and here I am. So here's another ramble...
So, I relented last night and took the medication to induce me to go to sleep. That was about 3:20am or thereabouts. I figured a late to bed and early get up would fix things. Not the case unfortunately as I am here again. Why did I relent you ask? In a word, pain. My head started to throb and various bits and pieces of my body were on their way to locking up, so staying up was not a good idea. Unfortunately I think I am headed for the same last night.
Let me say "Thanks" to those who took some time to have a chat with me on FB last night. It was greatly appreciated. Nice to have a chat and fill in some hours while I figured out what I should do. I have almost no doubt that the same will happen tonight. At least I have nailed one of the reasons and it is pain. Weather-related pain. The wet weather and the cold are most definitely getting to me again. Not happy about that. Expected it, but still not happy.
Of course due to the crappy weather I was unable to go to training tonight also. So the exercise thing went out the window so the joints have been sedentary. I hope that Wednesday clears up enough for me to go to training that night. I really think that the two doses of exercise that I get at training really do help. I think it is partially due to the enjoyment, partially due to the increased heart-rate, and partially due to the inner-warmth generated due to the exercise. Whatever the cause/effect, it works and I need training at least twice a week for this to work. For those who are new to the blog, that would be fencing training.
Best idea I ever had with regard to my FM was taking up fencing some 20 years ago. I have not looked back. It provides me with motivation, exercise and more importantly something to focus my mind on. Sure I play some console games as well and that helps, but the holistic approach to the study of fencing, studying and doing it, fulfills both the mind and the body. There is so much to learn and that is awesome. I am not saying that it is the magic key, but I think it really helps. What helps is that I have had multiple medical practitioners agree with this assessment. If you can, maybe you should give it a go.
Anyway, the brain has pretty much run out of things to write at the moment. I will probably follow the same procedure as last night, go on FB and have a chat until the body says "No more" again. I know it is not a solution, but heck, it seems to be the thing to do at the moment.
Cheers,
Henry.
Monday, July 1, 2013
Sleep time... What?
Greetings,
Well, I figured I should get around to writing this one sooner rather than later before it passed my mind. It is on that immortal subject of sleep. Unlike my usual posts which are usually organised by thought and so forth this one will not. I also do not guarantee that it is not going to be a lot of rambling.
Anyhow....
For the most part and "usually", if there is such a thing, I get tired, I take my evening medication and I go to bed. Unfortunately this is not always the case. I would like to cite the last couple of days as a prime example. I have been getting up at my usual time, doing what I do in a day. Then it comes to midnight, my average and usual bedtime, and I am not tired. On a usual day I am usually trying to stay awake, past couple of days it has been quite a bit of the opposite.
I, as a rule, do not like having to take medication in order to get to sleep. I did this for a while and my I got a little dependent on them. As I said, usually I get tired, I take my medication and I go to bed. More recently it has been take medication to make me tired and then go to bed, which is not the way that I like it to work. Now I do apologise to any of my readers who are familiar with the concept of insomnia, especially where it is associated with fibromyalgia. For me this is not a general thing that happens.
Only times when I have trouble getting to sleep is: when I have slept during the day, for an extended period of time; got something in my subconscious that is bugging me; I am particularly concerned about something in my life; had too much caffeine (yeah right, ask anyone who knows me well about this one); or the weather is so bad that I am in pain enough that I cannot sleep without pain-killers, another one of my pet-hates. Sure the weather has been really crappy of late and I have been in a bit of pain, but no more than my "usual".
So, here am I sitting, for the first time actually writing on the subject which is actually going wrong for me currently. My usual is to leave it until I can compose my thoughts properly and then write it "properly". Cold weather usually cramps my hands and causes me issues, did so this morning, it was actually my first symptom of FM that I got. Of course my original doctor put it off to "growing pains" or "being too tall and thin" or some other "easily-explainable" or "untreatable, besides by anti-inflammatories" reason. Anyway back on subject-ish. One of the reasons for removing the "regularity" from this blog was for a better insight into what is going on "now" for me. Well, just for a change it is happening.
My issue at hand is that I should be tired enough that I want to take my medications and go to bed. But I am not so I am not going to. This time, I think I am actually going to stay awake and see just how long it will actually take me to feel like sleeping. I would not be surprised if I end up doing some research or end up on Facebook. I am sure that there must be someone awake in the world wanting a chat.
Anyway, I do not know if I will update this blog and keep you all filled in on this. I will make no guarantees on that one. So I will see how things go. You never know you may get another out of me quite soon. Or at least sooner than I would usually.
Cheers,
Henry.
Well, I figured I should get around to writing this one sooner rather than later before it passed my mind. It is on that immortal subject of sleep. Unlike my usual posts which are usually organised by thought and so forth this one will not. I also do not guarantee that it is not going to be a lot of rambling.
Anyhow....
For the most part and "usually", if there is such a thing, I get tired, I take my evening medication and I go to bed. Unfortunately this is not always the case. I would like to cite the last couple of days as a prime example. I have been getting up at my usual time, doing what I do in a day. Then it comes to midnight, my average and usual bedtime, and I am not tired. On a usual day I am usually trying to stay awake, past couple of days it has been quite a bit of the opposite.
I, as a rule, do not like having to take medication in order to get to sleep. I did this for a while and my I got a little dependent on them. As I said, usually I get tired, I take my medication and I go to bed. More recently it has been take medication to make me tired and then go to bed, which is not the way that I like it to work. Now I do apologise to any of my readers who are familiar with the concept of insomnia, especially where it is associated with fibromyalgia. For me this is not a general thing that happens.
Only times when I have trouble getting to sleep is: when I have slept during the day, for an extended period of time; got something in my subconscious that is bugging me; I am particularly concerned about something in my life; had too much caffeine (yeah right, ask anyone who knows me well about this one); or the weather is so bad that I am in pain enough that I cannot sleep without pain-killers, another one of my pet-hates. Sure the weather has been really crappy of late and I have been in a bit of pain, but no more than my "usual".
So, here am I sitting, for the first time actually writing on the subject which is actually going wrong for me currently. My usual is to leave it until I can compose my thoughts properly and then write it "properly". Cold weather usually cramps my hands and causes me issues, did so this morning, it was actually my first symptom of FM that I got. Of course my original doctor put it off to "growing pains" or "being too tall and thin" or some other "easily-explainable" or "untreatable, besides by anti-inflammatories" reason. Anyway back on subject-ish. One of the reasons for removing the "regularity" from this blog was for a better insight into what is going on "now" for me. Well, just for a change it is happening.
My issue at hand is that I should be tired enough that I want to take my medications and go to bed. But I am not so I am not going to. This time, I think I am actually going to stay awake and see just how long it will actually take me to feel like sleeping. I would not be surprised if I end up doing some research or end up on Facebook. I am sure that there must be someone awake in the world wanting a chat.
Anyway, I do not know if I will update this blog and keep you all filled in on this. I will make no guarantees on that one. So I will see how things go. You never know you may get another out of me quite soon. Or at least sooner than I would usually.
Cheers,
Henry.
Friday, May 31, 2013
Pain-killers... Oh, How I Loathe Thee.
Greetings,
I need to be a little specific with this topic, and I suspect that this is going to be a little shorter than my usual post. I am going to talk about pain-killers. More to the point I am going to talk about the reasons why I am so disinclined to take them if I can find any other way in which to solve a pain issue. This is probably going to seem a little odd to some.
So, you have a headache. Straight to the medicine cabinet, pop two pills, be they aspirin or paracetamol, and everything is good, right? For most people I would say that this is how things work. So I had a headache last night, with neck pain and back pain. According to the description above it should have been simple, follow the instructions have the pain-killers and be done with it, right? In my case not so easy. This is more than a simple choice to make, in fact it can be quite a bit more complex.
First of all, due to being on methotrexate for sarcoidosis (which is on the retreat I am glad to say) I cannot take aspirin due to the blood-thinning agents in both medications, also I cannot take paracetamol due to the liver issues associated with the combinations. This effectively takes out things like panadol, panadol forte, aspalgin, mersyndol and mersyndol forte. Pretty much all the over the counter stuff is gone, along with some which you can need a prescription for.
What does this leave? This leaves wonderful things like MS Contin, which is a morphine derivative, and Tramadol which is a synthetic drug designed to stop the pain signals to the brain. Or at least these are the two wonderful drugs I have been prescribed in addition to my usual drugs taken for FM. The Tramadol is the main one, but in order to take this I have to make choices.
I don't like taking the MS Contin for obvious reasons, however I can take that whenever I need it as it has no real reactions besides the above to anything else I am on. The Tramadol on the other hand reacts with the anti-depressant that I am on in the evening, so I need to make a choice of one or the other. Not a great choice I can tell you.
In the taking of either of the drugs, I know for a fact that I am going to be have "brain fuzz" for at least 24 hours if not longer. This is like the good old FM fog, i.e. can't think straight, lose track of things and all those wonderful symptoms. The big reason why I really dislike taking the pain-killers. Pain goes away, leaves the disgusting fuzz behind. For the most part I will do anything in order to not take either of them. This includes putting up with the pain, having a warm shower (which helps a surprising amount), going to bed early if it is in the evening (and sometimes during the day, not all that often if I can help it), or just trying not to think about it and working around it.
Of course the other big reason why I do not like taking the pain-killers is because I do not want to end up dependent and upping the doses as my body gets used to them. I do not feel like being dependent on "big-dose" pain-killers at all. The concept of being like this and dependent on them is something that I will avoid as best I can, and if that means I go without, well so be it. Needless to say, I keep my pain levels under reasonable control as best I can, and will put up with the pain for the most part until I can't. Pain-killers for me are a last resort.
Cheers,
Henry.
I need to be a little specific with this topic, and I suspect that this is going to be a little shorter than my usual post. I am going to talk about pain-killers. More to the point I am going to talk about the reasons why I am so disinclined to take them if I can find any other way in which to solve a pain issue. This is probably going to seem a little odd to some.
So, you have a headache. Straight to the medicine cabinet, pop two pills, be they aspirin or paracetamol, and everything is good, right? For most people I would say that this is how things work. So I had a headache last night, with neck pain and back pain. According to the description above it should have been simple, follow the instructions have the pain-killers and be done with it, right? In my case not so easy. This is more than a simple choice to make, in fact it can be quite a bit more complex.
First of all, due to being on methotrexate for sarcoidosis (which is on the retreat I am glad to say) I cannot take aspirin due to the blood-thinning agents in both medications, also I cannot take paracetamol due to the liver issues associated with the combinations. This effectively takes out things like panadol, panadol forte, aspalgin, mersyndol and mersyndol forte. Pretty much all the over the counter stuff is gone, along with some which you can need a prescription for.
What does this leave? This leaves wonderful things like MS Contin, which is a morphine derivative, and Tramadol which is a synthetic drug designed to stop the pain signals to the brain. Or at least these are the two wonderful drugs I have been prescribed in addition to my usual drugs taken for FM. The Tramadol is the main one, but in order to take this I have to make choices.
I don't like taking the MS Contin for obvious reasons, however I can take that whenever I need it as it has no real reactions besides the above to anything else I am on. The Tramadol on the other hand reacts with the anti-depressant that I am on in the evening, so I need to make a choice of one or the other. Not a great choice I can tell you.
In the taking of either of the drugs, I know for a fact that I am going to be have "brain fuzz" for at least 24 hours if not longer. This is like the good old FM fog, i.e. can't think straight, lose track of things and all those wonderful symptoms. The big reason why I really dislike taking the pain-killers. Pain goes away, leaves the disgusting fuzz behind. For the most part I will do anything in order to not take either of them. This includes putting up with the pain, having a warm shower (which helps a surprising amount), going to bed early if it is in the evening (and sometimes during the day, not all that often if I can help it), or just trying not to think about it and working around it.
Of course the other big reason why I do not like taking the pain-killers is because I do not want to end up dependent and upping the doses as my body gets used to them. I do not feel like being dependent on "big-dose" pain-killers at all. The concept of being like this and dependent on them is something that I will avoid as best I can, and if that means I go without, well so be it. Needless to say, I keep my pain levels under reasonable control as best I can, and will put up with the pain for the most part until I can't. Pain-killers for me are a last resort.
Cheers,
Henry.
Thursday, November 15, 2012
Camouflage
Greetings,
Ok, so the title of this one is cryptic as hell. Camouflage is the art of concealment and is most usually heard with regard to military matters or animals. Camouflage is about blending into your surroundings. For this blog entry I am using it in a medical sense one condition covering another.
My first experience with regard to this one with regard to fibromyalgia (FM) was interesting and put quite a few people into a state of panic, ironically I was not one of them. So the story goes like this... One day I wake up and my left shoulder was really aching a lot, so as per usual I ignored it as best as I could. Later on in the day the shoulder disapates, but my chest starts aching and making it a little hard to breathe, further down the track the left shoulder moves to the left arm. By this time I am in quite a bit of pain and really unimpressed with the world. So, I decide that this is beyond the joke. As far as I was concerned I had a developing chest infection and a muscle issue in my shoulder. Time to call an ambulance as I was not in a condition to be walking to my doctor. So I rang up the ambulance and gave them my symptoms, much to my surprise I had one around to my place about 10 minutes later. The paramedics ask me my symptoms and bundle me into the ambulance. I arrive at the hospital and they immediately get me in and put sticky things on my chest and hook me up to a machine. Doctor comes in later with a puzzled look on his face as he cannot find a reason, he asks me some questions and I answer him, eventually getting to the bit about having FM. He then smiles leaves, comes back with some aspalgin and gives it to me. It all begins to feel better a little while later on. Seems that going by the diagnosis I was having a heart attack, nope just the FM playing up and messing with people.
I can tell you that after that experience I have been a little more careful about tracking my symptoms, and also about when I do and do not call the ambulance. It was a little scary that the FM could cover up or imitate a heart attack and I decided that being aware of this was really important. In other ways the experience has made me a little more relaxed about things, and a little more attentive to my pain needs.
Now we move on to the present my right shoulder has always been a little dodgy. I have had a nerve pinched on that side and it often gets overworked while fencing. When I woke up one morning with a really stiff shoulder I smiled and went looking for the "Deep Heat" and a hot shower. It abated it a little but not as much as I would have liked. What did not make sense was this one did not miraculously go away like the previous. I sat on it for a week. Every day same shoulder same stiffness and soreness. So off to the doctor I went.
A week and an x-ray later the result is that there is actually a problem with my neck and not my shoulder after all. Seems that the pain in my shoulder is nerve pain as a result of the neck issue. As far as rthe neck is concerned Cervical vertebrae 3 and 4, or C3/4 are touching one another and causing the issue. I have looked at the x-ray myself and it is pretty spectacular. I had intentions of scanning the x-ray and putting it on here to show you but it was not to be. Anyway we looked at physiotherapy and turned out to be a bad idea so it is medicinal relief instead, an increase in the medication. I will say that it is, for the most part, holding up quite well.
The conclusion to this one, if it hangs around get it checked out, regardless. The best news that you can get is that it is nothing, or nothing to worry about. FM has the ability to cover up other issues with its total randomness and people with FM and those who care about them should both be aware of this.
Cheers,
Henry.
Ok, so the title of this one is cryptic as hell. Camouflage is the art of concealment and is most usually heard with regard to military matters or animals. Camouflage is about blending into your surroundings. For this blog entry I am using it in a medical sense one condition covering another.
My first experience with regard to this one with regard to fibromyalgia (FM) was interesting and put quite a few people into a state of panic, ironically I was not one of them. So the story goes like this... One day I wake up and my left shoulder was really aching a lot, so as per usual I ignored it as best as I could. Later on in the day the shoulder disapates, but my chest starts aching and making it a little hard to breathe, further down the track the left shoulder moves to the left arm. By this time I am in quite a bit of pain and really unimpressed with the world. So, I decide that this is beyond the joke. As far as I was concerned I had a developing chest infection and a muscle issue in my shoulder. Time to call an ambulance as I was not in a condition to be walking to my doctor. So I rang up the ambulance and gave them my symptoms, much to my surprise I had one around to my place about 10 minutes later. The paramedics ask me my symptoms and bundle me into the ambulance. I arrive at the hospital and they immediately get me in and put sticky things on my chest and hook me up to a machine. Doctor comes in later with a puzzled look on his face as he cannot find a reason, he asks me some questions and I answer him, eventually getting to the bit about having FM. He then smiles leaves, comes back with some aspalgin and gives it to me. It all begins to feel better a little while later on. Seems that going by the diagnosis I was having a heart attack, nope just the FM playing up and messing with people.
I can tell you that after that experience I have been a little more careful about tracking my symptoms, and also about when I do and do not call the ambulance. It was a little scary that the FM could cover up or imitate a heart attack and I decided that being aware of this was really important. In other ways the experience has made me a little more relaxed about things, and a little more attentive to my pain needs.
Now we move on to the present my right shoulder has always been a little dodgy. I have had a nerve pinched on that side and it often gets overworked while fencing. When I woke up one morning with a really stiff shoulder I smiled and went looking for the "Deep Heat" and a hot shower. It abated it a little but not as much as I would have liked. What did not make sense was this one did not miraculously go away like the previous. I sat on it for a week. Every day same shoulder same stiffness and soreness. So off to the doctor I went.
A week and an x-ray later the result is that there is actually a problem with my neck and not my shoulder after all. Seems that the pain in my shoulder is nerve pain as a result of the neck issue. As far as rthe neck is concerned Cervical vertebrae 3 and 4, or C3/4 are touching one another and causing the issue. I have looked at the x-ray myself and it is pretty spectacular. I had intentions of scanning the x-ray and putting it on here to show you but it was not to be. Anyway we looked at physiotherapy and turned out to be a bad idea so it is medicinal relief instead, an increase in the medication. I will say that it is, for the most part, holding up quite well.
The conclusion to this one, if it hangs around get it checked out, regardless. The best news that you can get is that it is nothing, or nothing to worry about. FM has the ability to cover up other issues with its total randomness and people with FM and those who care about them should both be aware of this.
Cheers,
Henry.
Monday, February 1, 2010
01/02/2010 - Progression Made
Greetings,
Well, I seem to be getting this new addition to my medication regime under control, hell I am actually up at a reasonable time, that is a start. I am thinking that I may try getting to bed at a reasonable hour in the next couple of days and seeing whether it can all wear off by the morning, here's to hoping. The good thing is that I am actually beginning to manage the side-effects.
Yes, the side-effects are really annoying, especially for me. Feeling "fuzzy-headed" and lethargic is just not me, as many who know me will tell you. I am getting these under control, mostly through taking some time each morning to get through that bit in order to get on with the rest of the day. Of course, I am still having a day every now and then which is spent on the couch as the universe catches up with me. I am beginning to think that this means I need to slow down a bit.
I am beginning to think that I may actually begin to need a little more down-time than usual for a while, especially with these new meds working on me. I don't usually laze around too much, it is just not me, but I am thinking that this may actually be useful if I can get the timing right. I am hoping that the increase in rest here and there may help with the side-effects of the medication, and with other things in general, but I suppose we will just have to see how it goes.
Cheers,
Henry.
Well, I seem to be getting this new addition to my medication regime under control, hell I am actually up at a reasonable time, that is a start. I am thinking that I may try getting to bed at a reasonable hour in the next couple of days and seeing whether it can all wear off by the morning, here's to hoping. The good thing is that I am actually beginning to manage the side-effects.
Yes, the side-effects are really annoying, especially for me. Feeling "fuzzy-headed" and lethargic is just not me, as many who know me will tell you. I am getting these under control, mostly through taking some time each morning to get through that bit in order to get on with the rest of the day. Of course, I am still having a day every now and then which is spent on the couch as the universe catches up with me. I am beginning to think that this means I need to slow down a bit.
I am beginning to think that I may actually begin to need a little more down-time than usual for a while, especially with these new meds working on me. I don't usually laze around too much, it is just not me, but I am thinking that this may actually be useful if I can get the timing right. I am hoping that the increase in rest here and there may help with the side-effects of the medication, and with other things in general, but I suppose we will just have to see how it goes.
Cheers,
Henry.
Thursday, January 21, 2010
21/01/2010 - Some Trying Days
Greetings,
Now I am going to attempt to explain what has been happening to me for the past couple of days. Recently I had a change in medication to deal with a side-issue. I have been getting chest pains near my sternum for a couple of months now. I went and saw my doctor, he poked and prodded and said he did not know what was going on. I was sent for an x-ray, the upside of this is that it cleared a lot of things off the list but still not solution. We are both thinking it is either a muscular or cartilage problem. The result of this was to increase my medication.
It was known that the side-effects of this combination of medication would result in some drowsiness and some lethargy. What I did not know was it would result in me sleeping for an extended period of time and also feeling "fuzzy-headed" and sluggish all day. While the medication has indeed reduced the pain in my chest, it has resulted in some other side-effects. The increased sleep is an increase of more than six hours and anyone who knows me will tell you that I am not the type to stay on the couch all day, well that is exactly where I have spent at least the last one.
This is truly one of those situations of the question of whether the cure is worse than the problem. I will be giving the current run of medications their chance, and will be giving myself some time to adjust to them. I am just hoping that the resulting in-between time is not too bad and that people will understand exactly what I am going through.
Cheers,
Henry.
Now I am going to attempt to explain what has been happening to me for the past couple of days. Recently I had a change in medication to deal with a side-issue. I have been getting chest pains near my sternum for a couple of months now. I went and saw my doctor, he poked and prodded and said he did not know what was going on. I was sent for an x-ray, the upside of this is that it cleared a lot of things off the list but still not solution. We are both thinking it is either a muscular or cartilage problem. The result of this was to increase my medication.
It was known that the side-effects of this combination of medication would result in some drowsiness and some lethargy. What I did not know was it would result in me sleeping for an extended period of time and also feeling "fuzzy-headed" and sluggish all day. While the medication has indeed reduced the pain in my chest, it has resulted in some other side-effects. The increased sleep is an increase of more than six hours and anyone who knows me will tell you that I am not the type to stay on the couch all day, well that is exactly where I have spent at least the last one.
This is truly one of those situations of the question of whether the cure is worse than the problem. I will be giving the current run of medications their chance, and will be giving myself some time to adjust to them. I am just hoping that the resulting in-between time is not too bad and that people will understand exactly what I am going through.
Cheers,
Henry.
Tuesday, December 15, 2009
8 - 11/12/2009 - My Little "Twinge"
Greetings,
Disguising and understating pain is something which I seem to have a true talent for. I mentioned on Facebook at one point in time that I was not feeling well and had a bit of a "twinge" of pain to deal with. Now, while it was somewhat the truth, the actual situation is something a little different. In essence, this is something like a "bad day" for me.
Where to start? Well I suppose at the beginning would be the most obvious. I woke up with some constriction across my chest. The muscles were aching quite a bit. I thought it was nothing so decided that I just needed to do a bit of deep breathing and it would all be good. I breathed deeply and instantly got sharp stabbing pains on both sides of my sternum, not a good start. Things with regard to my chest would only get worse for a while.
Along with the breathing issues associated with my chest, I also noticed a distinct lack of movement without pain. Anything that involved rapid or large amounts of movement of my arms was not good and caused me pain. This was not good and was actually the longest lasting aspect of the chest pain. The breathing eventually got easier and the pain lessened eventually taking deep breaths, but rapid movement was still a problem.
The next on the list was my left shoulder. This actually stiffened up quite a bit not long after the limiting aspect movement across the chest had lessened, which is about right for me. This was mainly stiffness on my left side a limited movement again. The chest area around the left shoulder was a little sore but nothing like my chest before.
Just to add a little more on to this situation, my left leg around the hip decided it would play up as well. This happened at the same time as my chest and continued with the shoulder issue. This was a sharp stabbing pain into the hip joint, but was more toward the spine, sound familiar? Yes, you guessed it sciatic pain. So at least I could nail it down to one nerve cluster. This would result in movement issues due to pain mainly, and as with any nerve issue it spread down the leg to my ankle. This of course made things rather difficult for quite a period of time.
So the question that comes to mind is how I dealt with this particular situation. Well medication is always helpful to a degree. In my case it was three different types of pain-killers all at once, but as anyone who knows me at all, this only came after I could not ignore the situation anymore. I tend to only resort to pain-killers once every other avenue has been exhausted. I don't tend to like to take pain-killers for several reasons, the two big ones being not wanting a dependence on them and the other being the amount required to actually do any good.
Pure ignorance and denial of the pain is one of the most basic, but tends to be the least effective of all of them. Distraction therapy is always much more successful. Getting involved in doing something to take my mind off the pain works much better. I altered what I was doing during the day somewhat, but not all that much. Stubbornness seems to be one of the key aspects which keeps me going during times like this. In many ways it is the stubbornness and distraction therapy which does the prime job and the painkillers are more of an assistance.
Well, that's about it. This is what one of my "bad days" is like. On a scale this situation, while it lasted for a couple of days actually rates pretty average to below average for one of my real "bad days". The get worse than this and sometimes, much worse than this. I don't tend to like to focus on this sort of thing as it depresses me, but it is just the way it is. I always look forward to what tomorrow will bring, no point in letting the issues and pain beat you, that takes all the fun away.
Cheers,
Henry.
Disguising and understating pain is something which I seem to have a true talent for. I mentioned on Facebook at one point in time that I was not feeling well and had a bit of a "twinge" of pain to deal with. Now, while it was somewhat the truth, the actual situation is something a little different. In essence, this is something like a "bad day" for me.
Where to start? Well I suppose at the beginning would be the most obvious. I woke up with some constriction across my chest. The muscles were aching quite a bit. I thought it was nothing so decided that I just needed to do a bit of deep breathing and it would all be good. I breathed deeply and instantly got sharp stabbing pains on both sides of my sternum, not a good start. Things with regard to my chest would only get worse for a while.
Along with the breathing issues associated with my chest, I also noticed a distinct lack of movement without pain. Anything that involved rapid or large amounts of movement of my arms was not good and caused me pain. This was not good and was actually the longest lasting aspect of the chest pain. The breathing eventually got easier and the pain lessened eventually taking deep breaths, but rapid movement was still a problem.
The next on the list was my left shoulder. This actually stiffened up quite a bit not long after the limiting aspect movement across the chest had lessened, which is about right for me. This was mainly stiffness on my left side a limited movement again. The chest area around the left shoulder was a little sore but nothing like my chest before.
Just to add a little more on to this situation, my left leg around the hip decided it would play up as well. This happened at the same time as my chest and continued with the shoulder issue. This was a sharp stabbing pain into the hip joint, but was more toward the spine, sound familiar? Yes, you guessed it sciatic pain. So at least I could nail it down to one nerve cluster. This would result in movement issues due to pain mainly, and as with any nerve issue it spread down the leg to my ankle. This of course made things rather difficult for quite a period of time.
So the question that comes to mind is how I dealt with this particular situation. Well medication is always helpful to a degree. In my case it was three different types of pain-killers all at once, but as anyone who knows me at all, this only came after I could not ignore the situation anymore. I tend to only resort to pain-killers once every other avenue has been exhausted. I don't tend to like to take pain-killers for several reasons, the two big ones being not wanting a dependence on them and the other being the amount required to actually do any good.
Pure ignorance and denial of the pain is one of the most basic, but tends to be the least effective of all of them. Distraction therapy is always much more successful. Getting involved in doing something to take my mind off the pain works much better. I altered what I was doing during the day somewhat, but not all that much. Stubbornness seems to be one of the key aspects which keeps me going during times like this. In many ways it is the stubbornness and distraction therapy which does the prime job and the painkillers are more of an assistance.
Well, that's about it. This is what one of my "bad days" is like. On a scale this situation, while it lasted for a couple of days actually rates pretty average to below average for one of my real "bad days". The get worse than this and sometimes, much worse than this. I don't tend to like to focus on this sort of thing as it depresses me, but it is just the way it is. I always look forward to what tomorrow will bring, no point in letting the issues and pain beat you, that takes all the fun away.
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.
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.
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