Jerry's Fabry Disease Blog

Keeping the Fabry community informed

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Jerry's Fabry Disease Blog was created to spread awareness about Fabry disease, a rare genetic disorder, and to share news and information about what is happening in the Fabry community. The blog is one component of the National Fabry Disease Foundation's social networking program.

So, I think using “pain crisis” to describe the recurring episodes of fever and pain that I have like many others with Fabry is an appropriate term after all. Throughout my life I’ve occasionally had sudden attacks of pain and distress that last a couple hours to a few days at a time. I’m thinking about this now because I just went through several days of distress with a Fabry pain crisis. I spent most of the time in bed or in a chair with limited activity. Like usual, this episode was characterized by varying degrees of intermittent fever (100 to 101 degrees Fahrenheit), mild to severe overall body achiness, a significant increase in vary types of neuropathic pain, significant fatigue, lack of appetite, and often worsened gastrointestinal upset. It’s like having a bad case of the flu without the coughing, nausea and vomiting. My periodic episodes are usually similar to this recent one although my fevers can get very high sometimes (103 to 104 degrees). As a child, my parents would wrap me in ice-towels to bring the fever down. I will always remember those times as some of my most unpleasant life-experiences. With Fabry disease, cold temperatures, especially freezing cold temperatures, induce more pain. I don’t blame my parents, these were last resort measures and I survived. The triggers to these episodes seem to be too much physical activity, overheating, and perhaps not enough sleep, but the onset is not predictable. I have endured hard work and physical activity much of my life but the occurrence of a pain crisis seems random. Having low-grade fevers, chills and chronic pain are a normal part of my life. Luckily for me, Tylenol (acetaminophen) works pretty well for me to manage my everyday overall achiness although its effectiveness seems to be declining. I take a tremendous amount of Tylenol and get my liver function checked regularly because Tylenol processes through the liver. I also routinely experience sporadic other neuropathic pain such sharp shooting pains in my extremities, deep aching in my lower legs, severe burning pain in my thighs, and areas skin pain the sting to touch lightly but not to press hard. These types of pain usually come and go somewhat quickly but not always. When possible, I try to avoid daily stronger neuropathic medications that numb my senses or make me sleepy. During a pain crisis, all these pains are more intense. They seem to get into my bones and my joints which is not normal for me. In summary, for me the pain crises are all my normal symptoms on overdrive accompanied by fever. I can’t ignore them, I just have to ride them out and hope some time passes before the next one. ♦