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.