In 1975 (then aged 32) I contracted Glandular Fever, the Epstein Barr Virus. Some 15 years later I got it again, this time followed by three years of Chronic Fatigue Syndrome, at which time Doctors were very reluctant to diagnose.
In between those years I rarely visited a doctor apart from treatment for an occasional bout of Candida, manifesting as vaginal thrush.
As I look back on it now I do have to consider that it may all be relevant to my current diagnoses of Sjogrens Syndrome, Fibromyalgia and Raynauds Phenomenom.
I did have some difficulties with my contact lenses feeling very scratchy in early 2002 and I was advised to give them up and go back to glasses.
In 2008 I was troubled by a very sore mouth with inflamed gums. My dentist didn’t know what it was so sent me to a specialist dentist at the Dental School in Adelaide where I was told it was Lichen Planus, an autoimmune problem which was treated with cortisone cream and eventually cleared.
Several months later, still 2008, I went to my GP complaining of pain behind my knees which I thought maybe was the beginning of arthritis since I come from an arthritic family. My knees were X rayed and blood tests done and I was told it was some sort of connective tissue problem, yet to manifest itself, and I was put onto Voltaren despite expressing my reluctance. I took only half the dosage my GP recommended and within two weeks had an inflamed gut, an outcome I had half expected given the history of this drug. My GP had a ‘take it or leave it’ attitude and needless to say I haven’t returned to her since.
Some six months later I decided to try again, this time to another doctor who again did blood tests and this time they came back with a confirmed diagnosis of Sjogrens Syndrome with SSa and SSb antibodies. I was sent to a Rheumatologist at the Flinders Medical Centre where after being put through a raft of tests, I was prescribed Plaquenil. We were about to go overseas so despite feeling a bit unsure, we went ahead. I struggled quite a bit with my health during that time, not only because the Plaquenil once again didn’t suit my gastro intestinal tract, but I was often fatigued and experiencing ‘twittering’ and trembling nerve endings which made me feel quite weird as it was a feeling with which I was most unfamiliar.
On our return and from then on, the other problems fairly rapidly appeared. The Raynauds bothers me badly in the winter despite special gloves, socks and ‘hot hand warmers’. Even in summer I’m sometimes affected.
My doctor diagnosed Fibromyalgia some time later when I went to him feeling quite wretched with pain all over my body and absolutely no energy. Because of my history with oral drugs causing gut inflammation, he organised for me to have pain patches which do take the edge off the pain but, of course, cause constipation. I have Lyrica at night to control the nerve ending discomfort and that works well but I do have to be careful with sleepiness, when not appropriate, despite only taking 50mg.
Cannabis Oil, if lawful here in Australia, would be a godsend to people with autoimmune pain, I’m quite sure.
I realise, having read so many stories both here and on the TASSA Facebook page, that I’m fortunate to have reached the age I am before this began to trouble my life so much and, even then, nowhere near as much as many others. I do have flares and some reasonable periods in between times and I have realized how much effect the everyday stresses of life have on these autoimmune diseases.
I agree with most everyone else who writes into these pages, that the medical fraternity know little about how to help us and so much more needs to be done with regard to research to find an answer. My doctor once told me that Stem Cell Research would be where the answer would finally come from and I’m hoping, with our Australian of the Year being a scientist researching in that area, my doctor may be right.