Saying No to the Culture of Death

Since I last wrote about my health I have been in and out of employment again. I had a role in North Ryde which was ok but again I felt very left out because I was the (con)temp(t). When I was finished up I came down with a very nasty chest infection. It is worth noting here that I was moved from desk to desk and ended up breathing in the fumes from the printers. I react to things like printer ink fumes, paint fumes and the like. Two of the women came down with a similar infection that I had caught. Needless to say, my immune system was in lowered mode, and I copped it sweet.

Once again this gave me the opportunity to go to see the doctor and follow up on the previous tests that I had in July. I was in for a few surprises when I got back the results. First of all I had a C-reactive protein reading that was way above normal (elevated) at 19. My ANA is now 1:80 and it has a speckled pattern. There was a suggestion from the lab that it could be lymphocytosis. So I was sent to another rheumatologist for a second opinion. This time he diagnosed a mild inflammatory arthritis plus secondary fibromyalgia. He saw me in terms of my weight and unfortunately he did not give me a name for the arthritis. Whenever I hear the diagnosis of fibromyalgia I fight it because I know that my symptoms do not match this syndrome, or at least a number of the symptoms that could be associated with the syndrome might in fact be caused by something else.

The outcome of that visit happened to be that I was to continue with the present treatment. I respond well to Celebrex and also to Neurontin because it controls the neuropathic pain. When I do not take the Neurontin, or I am left without Neurontin, my pain increases something like 5 to 10 fold. The pain that I had over the winter of 2005 was in part due to the fact that I was not able to get access to Neurontin to help control the neuropathic pain. Of course there was the usual recommendation about weight loss and comment about getting into a swimming pool for hydrotherapy. It is such a pity that some doctors tend to blame one's weight for everything, when the pain preceded the weight gain. However, being overweight seems to cause some kind of blockage when it comes to trying to get an accurate diagnosis for arthritis.

Well, I am not one to give up and I did not give in and totally accept the diagnosis of this rheumy. I blame myself for incorrectly answering some of his questions. It was a misunderstanding on my part because I have dry eyes and that is now officially diagnosed by an optometrist. In fact I had a very, very sore eye, and it was so sore I could barely read what was in front of me during that particular flare. This was a sign of what is really wrong but by giving a wrong answer to the rheumatologist, I came away without a definite response or opinion. Once again I went hunting on the Internet for answers. Finally, I looked up information on Ankylosing Spondilitis and sure enough when I joined two boards I suddenly found a group of women who had similar problems to my own.

The next step that I took was to suggest this to my doctor. He responded at first in the normal way, that AS is a condition that affects mostly men. I told him that I knew that this is the case. He mentioned that it can be very bad. I countered that the condition for women is different than that for men. This is very true because a lot of women do end up being misdiagnosed as having FMS (fibromyalgia) when in fact they have AS.

Fibromyalgia definitely exists, but if a person has inflammation that shows up on MRI or has degenerative changes to the spine, then FMS should not be considered as the primary diagnosis. It is not consistent with FMS to have plantar fascitis or metatarsalgia. It is not consistent with fibromyalgia to have gelly legs. A diagnosis of a low grade or moderate inflammatory arthritis fits very well with what was happening to me, but I needed a name.

Despite my efforts to locate a particular x-ray, I could not find it, and in the end my doctor sent me to get new x-rays. Since 1995 my back has deteriorated and now there are osteophytes present, as well as the narrowing of some discs. The result on the x-ray that I could not find had pinpointed that I had sacroilitis. This should have meant that a doctor should automatically accept that I, a woman, has ankylosing spondilitis. The treatment that I was receiving has definitely helped to keep the condition under control, but I have been very fatigued etc. That result was sufficient for my doctor to finally accept that I have AS. I am not HLAB27 positive, and that means a diagnosis of this nature is harder to establish, but this is only because I belong to a particular subset of people who have symptoms that resemble rheumatoid arthritis.

Having a diagnosis at last, and being able to put a name to the condition has meant a world of difference to me. I have been intensifying my exercise program. I had a recent trip to Melbourne and I took my back support with me for the car trip. The support turned out to be excellent and I was saved from having a bad time due to pain. I did not have my result from the x-ray prior to the trip. I feel more settled within because I now know what precisely has been wrong since that night in 1988 when my left thigh was in so much pain after we had been sitting on thw ground whilst attending an open air concert. I now have a goal. I have something that I can work towards as I try to tighten and strengthen my muscles that have been neglected (most because I was not coping with the pain, and not coping with being left in no man's land.)

It is true, people just want to be given a name. It makes everything more real. I have other battles to fight, including convincing my husband that I am not a hypochondriac because I seem to have a lot of doctor's visits. There has been so much that has needed to be sorted out. I have a tendency to get urinary infections, and that necessitates having antibiotics to clear the infection. I need a script for that purpose. So for me, it is a new beginning as I work towards the goal of losing weight and getting my muscles toned so that I can cope with the ankylosing spondylitis.