Update and... Answers?

Greetings good readers,

So, it has been a while since I have commented on my FM or on any other medical type issues. In fact, I will admit that with regard to this particular blog I have been horribly slack and for that I will give a little apology. It has been one of those things where I have been wondering whether it was really appropriate to be putting in the blog anyway. Yes, sure it is my blog therefore anything that I like can go in it, but the reverse is the same. Anyway on to the topic at hand time for some news and some which may surprise some people. Oh, sorry, but this is going to be a long one...

Time for some news then. Seems that there have been a couple of questions rolling around the local branches of the SCA (Society for Creative Anachronism) about my health and "some chest issue" that I seem to be having. Well, in order to squish some of those rumours and get the story straight, I will present the following...

Some months ago I was getting dressed and noticed a lump down toward my stomach. I thought nothing of it at the time and decided to ignore it. A little while later I noticed it again and decided that I should really do something about it and see what it was. So, off to the doctor for an examination, and then off to get an ultrasound. The result was an over-enlarged spleen. What? What is that from? So more tests now we get to go off for a CT scan of the abdomen/chest area to see what is going on. The preliminary result at that point in time once it all came back was sarcoidosis.

Well, after a referral to the general specialist at the Princess Alexandra Hospital in Brisbane, followed by being passed along to another respiratory specialist in another department of the same hospital, it has been confirmed that it is sarcoidosis. In this particular case the result and diagnosis is a good thing as it could have been a lot worse, and sarcoidosis is something that can be dealt with. In my case I am just putting it on my list of irritations. It is something that I have been keeping to myself and those people who really need to know for sometime on the basis that I did not want people making a fuss. For the most part it is really easy to handle things myself, hence no need for anyone else to worry about it.

So, what does all this mean, well if you want some information about sarcoidosis, the easiest one that I have found to read about this particular issue is the wikipedia version (http://en.wikipedia.org/wiki/Sarcoidosis). So, in essence it is something which just turns up for no apparent reason and in most cases goes away without assistance. In some rare cases it can be life-threatening, but I really don't think that I am going to end up in that basket. In my particular case the most part of the condition has been found in my lungs and this is where I am being most affected. The specialist is organising for me to have various tests to ensure that it has not got anywhere more inconvenient, but we are dealing with what is in front of us. Me, I am not particularly worried, I am counting it as a long-ish term inconvenience.  

So, for me the three major symptoms are, a reduction in my lung capacity leading to getting out of breath quicker and more often, an enlarged spleen which needs to be protected, and the most annoying of all an occasional "smoker's cough" which just irritates the hell out of me as I quit 7 August 2010. The hardest part for me is really the having to slow down a bit due to the reduced lung capacity and thus reduced energy levels to tell you the truth. I have some other symptoms such as random pains in the chest here and there which can be a bit painful, but they are less of an issue. With these symptoms on the table and presented to the doctor it was decided that medication in my case to control or at least deal with some of the symptoms to a degree was a good idea.

So, my GP (general practitioner) put me on symbicort as a start once the diagnosis was confirmed as sarcoidosis as a stop-gap until the specialist decided what she wanted to do about it. With the symptoms present it was decided that a course of prednisone to start with would be a good idea. Yay, more drugs to take, not. So these get taken once every morning with food. Food? In the morning? That means breakfast! Not being a breakfast type person this has taken some weeks to get used to I can tell you. Now of course we begin to look at the side-effects of the medication, and what an interesting list it is. Once again lets look at our friend the wikipedia for prednisone (http://en.wikipedia.org/wiki/Prednisone). What you will notice is an interesting list of side-effects, some of which I am going to notice and others which could be confused for the FM playing up. Just another list of possibilities is what I am putting it down as, nothing more.

So, I have this additional "thing" wrong with me, and what do you think I am going to do about it? Well, if you have read any of my previous blog posts about how I deal with my FM for the most part you will not be surprised about my response to this. The first part of my response is to do what the doctors are telling me to do about it from their point of view as they have my best interests in mind (Yes, I really do believe that). Second part of my response is to look at exactly what I can do about the situation and what I cannot do about it. The second bit is just for reference as focusing on what I cannot do is just going to annoy the hell out of me. Once I have figured out what I can do, do something about it. The third part of my response to this condition is to respond to it in much the same way that I deal with the FM, I will be doing what I can when I can, and attempting to grow the ability to slow down a little bit and not push myself too hard. I can tell you out of all of it, the last bit is the bit that is going to annoy me the most. So, now that is dealt with we can move on to something really interesting. 

My good sister recently sent me an article which postulates that fibromyalgia (FM) may actually be related to brain injuries on some level and thus through this may actually be more to do with the brain that the other parts of the body. This is rather interesting for me especially with my history, but also because this might actually give an answer as to how I got FM in the first place which would be truly amazing. This is the bit where I have a situation where I might have an answer finally.

Anyway the document proposes that FM might be caused by trauma to the brain. Now this trauma is not necessarily large, but in some cases it is actually quite small. Essentially the brain chemistry releases chemicals etc to deal with the injury itself and thus results in the symptoms of FM as expressed in many sufferers. In some cases FM has developed in a patient after Traumatic Brain Injury (TBI) and after surgeries related to such TBI or other conditions where the brain has been operated on. This is something which is of real interest to me due to some past history of mine.

In my particular case I had a very active childhood which in some instances due to my activity and exuberance resulted in impacts to the head. In my case I have had several doses of concussion in my life due to various incidences and accidents and also other head injuries. Now with the information which has been detailed above in my case I might actually have an answer as to the reason for me actually having FM. What is potentially truly exciting about this particular situation is that this means that there might, and I am not getting my hopes up, be a chance that there may be an end to it. In my situation I have had various promises with regard to answers which have fallen flat so I am not getting my hopes up just yet.

I don't expect miracle cures for anything, they are something which would be nice if they happened but not something that I expect. For the most part I am happy to plod along with the way that I am going. I will do what I can when I can and that will please me. Sure there will be those times where frustration will get the better of me, but the hardest lesson that I have had to learn is that sometimes I actually do need to slow down a bit. Sure I can tell others to do it, but it is one of those cases where I have a hard time taking my own advice. Best thing I think for all is pick yourself up and keep going, sure it may take some time, but you will get there in the end as long as you have the guts and the drive to do so. Quitting is easier, but it is sure as hell less satisfying.

Cheers,

Henry.