A New Journey

Behcet's Club New Journey

About a year ago, I got my diagnosis of Behcet’s disease and I sighed with relief. It was relief to finally find a doctor who knew what was wrong with my body. After many years of struggling with symptoms and sometimes wondering whether I had a mental disease, I could now start the journey of treatment or find a remedy that would improve my quality of life. Since then, it has been a long journey with ups and downs. I feel like there may be more downs than ups, but again, that could be the pessimism cast by my current situation. Earlier this week I had an appointment with my rheumatologist to review my blood tests and the pains I had been having that have only seemed to get worse with time. I thought it would be a routine check where he would change my painkiller prescription and I would go about business as usual. Unfortunately, he told me that the excessive pains I have been having are because of fibromyalgia. I was left speechless for a while. I did not like the turn this year was taking. First diabetes, now fibromyalgia. The good news was that Behcet’s is under control according to the blood tests, and that means that I do not have to get the biologics. At least not yet.

Since then I have been doing my research on this new chronic pain condition to familiarize myself with what to expect. I have learnt over time that research is my best friend. I cannot rely on the doctor to inform me on how to cope or what I will face as I go by my days. I find real life stories in support groups online, such as ‘The Mighty’ more helpful and relatable. Which is part of the reason I started this blog. To be a source of encouragement for that newly diagnosed person who is wondering how life will be.

I am still trying to come to terms with everything. At times I am sad, and at times I am well adjusted. The pain is still there every day. So is the brain fog, the trouble concentrating, and remarkable fatigue. I hope the medication will help, although, from what I have read on support forums, the medication does not help much. But girl can hope 😊

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