I have arthritis. In fact I have had clinical arthritis for a very long time, probably spanning at least 40 years. This is my story of very personal conflict. It is a story that is in keeping with the heading of my blog “A world at War”.
In reality I could state that my issues began when I was about 9 years old because that is when my skin went all funny, and the dandruff began. Years later this was diagnosed as Sebhorrea Dermatitis by a skin specialist who actually did a biopsy of my skin. There are more skin stories but they are not important to this story.
So where is the beginning of my story? Perhaps it began when a woman from DJ’s who was fitting me for school shoes noticed that my feet were different and we were sent off to see a chiropodist who sold us a pair of steel orthotics. I hated those shoe inserts. They were inflexible. No, I do not think that is the beginning. The real beginning happened a few years later when a girl I would describe as an enemy, not a friend deliberately tripped me up on the stairs at school. Yes I really was a victim of school bullying, not just by students but by a teacher!! This was the first time that I sprained my ankle. Over the years I have sprained my ankle hundreds of times. So, this was in fact a part of the beginning of my story and journey to get some answers.
The next part to this story happened when I was roughly 19 years old. By that time, I had experienced a number of weird things with my feet. I would purchase shoes I thought fitted and would find that when walking in them I ended up with bloody stockings at the toes. My toe nails were cutting into the toe, causing the bleeding. In other words as I was walking to and from university for example my feet were swelling. There is no other possible explanation. Yet this is not the ultimate experience at the time that I want to explain. By the age of 19 I was experiencing ankle swelling every time rain was pending. At the time of this story I had taken on a short job with the Commerce Library at the University of Melbourne, and yes I enjoyed that job. On this particular day, my ankle was hurting, and I said to my companions working with me that I could predict when the rain would come. I came within about half an hour with my prediction, it was not too bad for someone who was bragging to have gotten that close with the prediction. I did use a little help, by looking at the cloud formation :).
Ever since my teenage years my ankles have started playing up when it is about to rain. These days the discomfort is much more extreme than when I was younger and did things like ballroom dancing and walking from Flinders Street Station to Melbourne University. What I never understood is that this swelling is probably the earliest sympton of my “clinical” arthritis.
The next instalment of my story comes at the age of 22. when I slipped on some stairs, and discovered that synthetic carpets and leather-soled shoes do not mix. Well, that slip on the stairs caused more than a sprained ankle this time. Four months later I discovered that the cause of my growing discomfort was a fractured and displaced coccyx. This was before having any children. The discomfort was extreme. It was hard to sit, it was hard to stand still, and walking killed. It was even worse when trying to get to sleep. This went on for a very long time. However, I did get some respite after I gave birth to my first son.
After this came the car accident where I had a whiplash injury. I am not complaining because the seat belt restrained my body sufficiently so that I did not go through the window. The injury is a small price to pay, even though it has lasted all these years. The injury itself was a torn neck muscle and stretched ligaments. Ouch.
There were other injuries to my left calf muscle and once again to my shoulders. It was the new shoulder injuries that first caused investigations to begin. I had some blood tests and one indicator came back weakly positive. I was sent to a rheumatologist, had some further tests and he came to the conclusion that it was fibromyalgia and that I needed to go exercise and good-bye. He put me on what I describe as Zombie medication. I ceased taking that stuff not long after I began using it. At the same time I had no intention of going back to see him. In the meantime I continued with the physiotherapy which was very intensive. This was done under Worker’s Compensation laws. Then we moved to Townsville for a year. It was a year off work. However, Townsville is very humid in the wet season. Needless to say I had a lot of discomfort, and could barely put clothing on the clothesline… yes it really was that bad in the wet season. I fared better in the dry season, but this was helped by seeing a Rheumatologist by the name of Dr. Keary. He was the one who said I had clinical artritis because he observed my symptoms. However, at that stage the serological tests were not giving a real picture of what was happening.
After Townsville, it was back to Canberra, and I ended up with very sore shoulders once again. I was sent to the partner of the same doctor I had already seen with the request to inject my shoulders. (Dr. Keary had given me an injection in my shoulders that had helped me during those dry months in Townsville). This doctor took one look at my file and he refused to give the injection. He told me I had fibromyalgia, go exercise and threw me out the door. Actually I was exercising under a physiotherapist at the time. I can assure you I had a very dim view of Canberra doctors as a result of that treatment.
My years in Castle Hill were also eventful, but they were the years where my body began a series of changes. I had troubles with my hands and fingers. I continued to have issues with my feet. I was using orthotics by this time and changed Podiatrists a few times. The first doctor to recognize that my symptoms could be Rheumatoid Arthritis was Dr. Sue Kiang. She is a brilliant doctor who is able to pick up on people’s symptoms to offer a diagnosis. I went to her because I had a very sore left little finger. I thought I might have jammed it in a car door, but of course there was no crack from such an incident. Instead she had noticed arthritic changes in my little finger, thus she was prepared to call it RA. with a question mark. My other doctor from that era was also very good. He ordered some bone scans that indicated if anything that the level of inflammation since my first bone scan had significantly increased.
The first Rheumatologist that I saw in Sydney was a doctor Lim. I liked him. He thought that the inflammation indicated generalized osteoarthritis. I began a program of exercises under his care, and was seeing an exercise physiologist. He introduced me to taking Glucosamine because other patients were using this product and claimed some good results. I was sent to another doctor for a second opinion. More conflict because fibromyalgia was back on the table… but he also put me in the clinical arthritis category.
In the meantime some other things happened. These included a new round of plantar fasciitis. When this strikes it also hits into my hips. At this stage I was having hydrotherapy and treatment of the condition was a part of my hydrotherapy exercises. Then within months of this development I injured my coccyx for the second time. I had already developed an allergy to wooden seats that required I used a cushion to sit on the church pews, but now I needed a bit more in the way of padding. The injury happened in 2007 and I am still have problems. They are similar to the first time that I had this injury. For this reason I recommend that people should be very careful about trying to check the water temperature in a swimming pool because hitting one’s butt against the wall of the pool leads to lots of extreme discomfort!!
Our move to Canberra happened around this time, and once again I was in the hunt for a rheumatologist. My GP was very quick to pack me off to see a rheumatologist for my symptoms. This time I was very lucky to end up with a doctor who was very thorough in coming to a diagnosis. It meant a lot of tests, blood tests, bone scans, x-rays etc. but the end result happened to be that Chandi is by far the most thorough of all of the professionals that I have seen. I was diagnosed with Mixed Connective Tissue Disease. He knew that I had a low opinion of any fibromyalgia diagnosis, and he thought that MCTD was a nothing diagnosis but for me it was an end of a long journery of struggle because of those symptoms. About 2 years later my diagnosis changed because I was moving towards RA as a primary diagnosis. The most obvious symptoms are in my feet. Chandi was good and I do like Dr. Tymms who was responsible for bringing Chandi to Canberra.
Last year, in 2012 we moved from Canberra to the Central Coast. I had to find a new rheumatologist and I was sent to one in Gosford. I got so angry with that man, I was calling him a prick, and continue to refer to him in that way. However, yesterday I behaved and did not refer to him in such a derogatory way when I went to visit another rheumatologist. This prick in the first consultation stated that he thought Chandi was wrong with his diagnosis and that fibromyalgia was my primary condition. He then proceeded to reduce my dosage of Methotrexate, and by the next appointment he took me off the Plaquenil. He barked at me with his questions. I gave some wrong answers because of the actual questions. Even in the letters he wrote to my doctor he had errors regarding the actual consultation. He paid no heed to the actual blood test results. As a result of the way he behaved, one indicator which had been reducing as a result of the treatment with Methotrexate and Plaquenil started to rise again. I only knew this when I read what I was taking to the new person. After the last consultation he decided to review me in 12 months, BUT I have no intention of remaining as his patient. When my GP called me in for a consultation regarding the letter he had received from this man, I hit the roof over what had been stated. There were errors again over what was discussed, this made me furious. I had shown him the bone scan reports and he seemed to be mollified. I told him that I was not continuing with the Zombie medication (I fought with him about that stuff) and he had in fact abused me because I had not increased the dosage of that crap. So, I did not hold it in when this doctor had conceded to my GP that Lyrica was also used for fibromyalgia. I had used Lyrica in the past but it was expensive medication and I had to stop because the price was too much to pay. However, Lyrica is now on the free list which means I pay a lower amount for a prescription, and the price has in fact fallen significantly because it is approved to be used for neuropathic pain which is the reason that I use the medication. During the consultation with my GP I did in fact call the man a prick, yes, I actually said that.
My GP gave me a referral to another man and I saw him yesterday. I have asked this man to be my Specialist Rheumatologist. I am once again changing my medication dosages, and we will see what happens 6 months from now. In the meantime I am happy with him.
One more thing about Chandi, he was the one who first sent me for a sleep study because he knew of a possible link between sleep apnea and fibromyalgia. It is all about the need for restorative sleep in order for the body to heal. To cut a long story short, my GP sent me to a doctor who is a specialist in lung and sleep disorders. I did another study and this time the diagnosis had gone from mild to moderate sleep apnea. I am grateful to Chandi because of his persistence in the first place. Yesterday, this new doctor with a twinkle in his eye described the treatment for sleep apnea as unromantic… he made me laugh as I explained that both of us are now on machines. Yes it is very unromantic!!
As you can see, this is indeed a story about personal conflict and working through what has been ailing me for a very long time. I was surprised that this doctor pointed out the obvious about my long journey, even though I would add maybe another 20 years with regard to symptoms. At least in those early years there were no inflammatory indicators.
This is a personal journey for me, and there are some extra things I have not added, especially about the extra falls and the bruising that I have experienced, though most of it does not match the bruise I got on my butt after that second incident. I guess that bruising is an indication that some nerves in the region were indeed affected by the accident. The other good thing about yesterday is that this man recognized that I am an intelligent woman. It makes a big difference. So now I am ready to move forward as I seek to cooperate with this particular doctor.