I have been very busy with both work and family. And while I diligently and faithfully take my medication daily, little did I know I will be "gunned down" and be confined to home suddenly by this disease - shingles - in the midst of a busy working schedule! It seems that people with lupus are prone to this disease. Shingles or herpes zoster is caused by the same virus that causes chicken pox. When you have chicken pox especially when you are young, apparently the virus does not completely leave your body when you recovered. Some virus hide in your nerves and become dormant like a volcano. When your immune system is weaken, as in the case of lupus patient who is taking steriods and immunosuppressant drugs for a long time and probably due to stress too, the virus will be awaken like a mummy and create havoc to your life and give your pains that can be killing, if not unbearable.
It all started with hypersensitive skin at part of my left hand. Then this hypersensitiveness slowly spread to my whole left hand and arm. And I also experienced numbness, tingling feelings, pin and needles and ache on my my hand and arm. As for my left shoulder, I have this stabbing pain and sometime piercing pain from the back of the shoulder to my heart area which can be unbearable. I ignored the hypersensitiveness of skin initially as I thought it will come and go like those I experienced before. But when it didn't and spread, I went to see my doc. He initially thought that it is nerve pain caused by nerve inflammation - probably due to my lupus fare. He increased my prednisolone to 15mg from 6.5mg and gave me a new medicine, Lyrica for my nerve pain. I stayed home the next day and noticed that rashes appearing on my left armpit and hands. I called the doc thinking it might be an allergic reaction to the new medicine I took. The doc ordered me to see him immediately. Just a look at the rashes, he concluded that I have shingles. He prescribed anti-viral drug, valaciclovi and asked me to go back to same level of prednisolone.
I have innocently thought that shingles is like chicken pox. I was so wrong. The pain both on the skin and the nerve are unbearable at times. Sometime when my spirit was weak and the pain was killing (even when I took the painkillers), I secretly wish I was dead so that I need not suffer the pains. I told my doc about the ineffectiveness of the painkillers (panadeine) and when he changed to another medicine - ultracet - it was effective in reducing the pain but I have adverse reaction to it - dizziness and nausea which was so bad that I was reduced to staying in the bed for almost 2 days. I guess there is no such thing as having the cake and eat it too.
I am still on medical leave recovering from shingles. Typically, it takes about 2 weeks to recover from it. The pains are still there but the rashes are drying out. I have stopped taking ultracet and relying solely on Lyrica to cope with the pain although it is not very effective. When I told my doc that shingles seems to be prone among the lupus patients, he said with a matter of fact that it is a "balancing act'. While steriods and immunosuppressant drugs are used to control lupus flare, it inevitably that they also weaken your immunity and make you suspectible to disease like shingles. It is unfortuntable but it is definitely something lupus patients must deal with and somewhat come to expect it. Personally, I am quite depressed over it, having to deal with 1 operation and 2 major illness within a short period of 1 year. Not only my family suffered, my career and work is also badly affected by my "roller coaster" health.
Nothing could change the fact that I have lupus and my life will be more unpredictable with it. But no matter what happen, I just have to take one day at a time, and live life to the fullest as I could since I do not know what will happen to me next.