Hi all, I just wondered if any of you have AF as well as Lupus? I am a bit unsure of whats going on with me at the moment and could really do with some advice.
I was diagnosed with SLE 12 months ago, after gaining the butterfly rash, joint pains, swelling, fatigue and feeling a bit down. I was just monitored at first, and told to use Ibuprofen and sunscrean. I was okay for a while, until October 12 when I developed severe chest pains, fatigue and shortness of breath. I went to the GP and he diagnosed inflamation of the chest wall, he told me to rest. I felt really ill and was off for 2 weeks. I was then prescribed hydroxychloroquine by my rheumatologist in Novemeber 12. I continued to feel rough for a couple of months but by Febuary 13, I noticed a real change. I felt a lot better I would have a flare roughly once a month (rash, joint pain, chest pain) but just pain managed it. My rheumatologist was pleased that I had responded to the medication and said that I should keep a diary, as he believed my monthly flares were linked to my hormones.
However, by April time I started noticing that my heart would race really fast for no reason and that I couldn't catch my breath, then it would settle down. I put it down to the inflamation as I would often get chest pains. A few weeks later I felt the chest pains come on in the morning, so took some painkillers as normal but they persisted. They didn't ease off and my heart was racing whilst I was at work. I went to lie down to see if it would pass but the chest pain, fast heart rate and shortness of breath persisted. I started to vomit and the room started spinning. My collegues called 999 as it was scaring them, they took me to CCU. I was told I had AF and my heart rate at one point had gone up to 300 beats per minute. I was given medication and it settled, I was discharged with beta blockers and told to rest. I was told that I would have a follow up appt with the cardiologist in two months. I went home and rested for 2 weeks as I had fatigue, shortness of breath on excertion, and kept having AF episodes. The GP said that my symptons could be due to the beta blockers, and by body getting used to them. I went back to work on light duties and reduced hours due to the shortness of breath and fatigue.
I saw the cardiologist last Tuesday and updated him that I was still getting weekly AF episodes but my main concern was the shortness of breath and fatigue. With two young children and being a young active person it was getting me down. The cardiologist said that they would try me on flecainide as this didn't have as many side effects. I dont think the flecainide agreed, I had been on it for 2 days and I felt a bit confussed, anxious and had insomnia. On the Thursday morning my heart started racing again, I was vomiting the room started spinning. My hubbie called 999 when the paramedics got to me I was tachycardic about 160 but not in AF this time, they called my GP and he wanted me to be admitted again. I went on a general medical ward, my heart rate settled down,they swapped me back to the beta blockers, on discharge they said that I need to see the cardiologist in the next week or two for further investigations.
Currently I am shattered, still getting out of puff, my chest hurts most of the time, especially when I lie down or exert myself. I just feel that I am starting to be a burden to my hubbie and my work collegues.
Can anyone give me some advice please? I don't know wheather I'm coming or going? I don't know if its the lupus, AF or both? On a positive note I have my rheumatologist appointment on Friday and my cardiologist the week after?
Sorry for the essay