I am a 39-year old male who in January 2008 had a violent cough, weight loss and pains in my joints which changed daily. My three year old son used to imitate my coughing as I was doing it so much! My GP thought it was a virus and described me as a mystery.
I then started have atrial fibrillations (strange heart rhythm), three times in 6 weeks, each resulting in hospital stays, the last one needing an electro shock to my heart.
My stay in a Greek hospital triggered a rheumatology referral that diagnosed Lupus, by which time my hair was falling out, I had severe aches in my muscles, my teeth kept going out of alignment, my joints were stiff, swelling and in huge pain and I was too exhausted all the time to do anything. I developed horrendous oesophagus pains on swallowing. It felt like a sledge hammer smashing into my back. This caused a lack of appetite and some weight loss.
My treatment medications helped me for a few hours a day. I often woke up a cripple in great pain and used to cry at the top of the stairs knowing what pain was coming to try to get down them and wait for my drugs to take effect. Before the drugs would kick in each day I couldn't even pick up a sock or pull the sheet over me at night when I was cold. Even the neighbours through a solid concrete floor could hear my moans of pain through the night. The pills started working about lunchtime and gave me (almost) pain-free respite for 3-4 hours until the stiffness and pains all started returning in the evening. Unfortunately I couldn't do much in those nicer hours as by then I was so tired I needed to sleep.
My three year old wanted me to chase him and hold him upside down like I used to. I felt so guilty at not being able to and not being able to go out with my wife to do things together as we did previously. Very luckily, at the time, I had an understanding boss who suffered from similar problems, allowing me plenty of rest. Twice I was taken out for dinner by my parents and by chance on those two occasions I was struck down with such intense stomach pains that not only could I not eat, but other diners gave me very concerned looks!
The depression that comes with Lupus for me has been strange. I usually suddenly wanted to cry for no apparent reason. I would not be thinking of anything but suddenly felt down. I usually left the room so no-one had to see this. Luckily I have never felt too sorry for myself, despite having spent the first 5 months on the sofa in great pain. I was on a change of medications to clear up my problems, but do expect to have flare-ups for the rest of my life.
My GPs seemed not to know anything of Lupus and several rheumatologists I have seen have little knowledge of connective tissue disorders, or bother treating me as someone in great pain. I have had symptoms for 25 years without knowing what I had. Not even my arthritic hips (at the age of 37) were enough of a sign to the doctors that something strange was going on. This was why I asked for a referral to the Lupus unit. The faster I can clear up my symptoms the sooner I can return to work, and have a lot of fun with my family again.
Dr. Cuadrado at the Louise Coote Lupus Unit put me on an immuno-suppressant that worked miracles. It took away all my symptoms so I had my life back. Alas, it was short lived as I had to keep reducing the dose as it was adversely affecting my body in other ways. I have now been settled for the past 6 months with limited symptoms. Just the fatigue is my bug bear. But I am thankful that I was diagnosed after such a long time to be in a safer position now. I am looking for work and do have times with my son when we run around. I am thankful and lucky and hope that I have seen the last of my major problems.
