The experience of people with sarcoidosis varies considerably. Many people diagnosed with sarcoidosis go into remission relatively quickly after treatment and never suffer another symptom. Other people are not helped by the treatment and the symptoms become so debilitating that they experience long-term disability.
I’m somewhere in the middle.
I have responded to treatment but I have never gone into complete remission. Nor are my symptoms so severe that I cannot work or live a “normal” life. My experience is that of generally good health with periodic flare-ups.
What is a sarcoidosis flare-up?
I cannot speak to the experience of others. I can barely generalize about my own experience. It depends on where in my body the sarcoidosis is most active. I have it in my lymph nodes, lungs and eyes.
At this moment, I’m in the midst of a flare-up and so I can explain what is going on right now. One of the first symptoms is often increased fatigue. I require more naps and get pretty grumpy without them. Sometimes (like now), I get a rash. The name sarcoidosis includes the Greek word for flesh, because it was originally discovered by the effects on the skin (even though many people now mistakenly think of it as a lung disease). I also notice shortness of breath. I was much more winded the last time I went swimming than I had been in recent weeks.
The worst part is the muscle and joint pain. It is different from the pain of pulling a muscle or exerting yourself too much. The pain can move around quite frequently. I get a lot of it in my back, but it doesn’t stay in just one spot. Also, it doesn’t gradually get better the way it happens after you have worked out too hard. I can be walking with a cane in the morning and go for a run pain-free in the evening. It can change that fast.
I share this, not to complain, but to increase awareness. Sarcoidosis is one of those invisible conditions where people can look healthy but are experiencing tremendous pain. I’m thankful for the health that I have and I know that this flare-up will be gone soon.