Even when I’m perplexed, my community helps me feel validated
Dealing with a mysterious symptom is easier when someone else 'gets it'
As I’ve grown older with sickle cell disease, I’ve come to appreciate the incredible community that’s emerged. This network connects us, amplifies our voices, and gives us a platform to share our experiences. I’ve been fortunate to meet some amazing sickle cell warriors who’ve helped deepen my understanding of the condition.
Even though general information, such as the disease’s symptoms and treatments, is available, much remains unknown.
For example, countless online articles explain how to manage avascular necrosis, a common complication of sickle cell. I’ve found that strengthening the muscles around my knees has significantly alleviated my daily pain, though other therapies are available.
However, one symptom that still baffles me is the intense itching sensation I experience while walking. It seems random and unpredictable. I’ve wondered if it’s related to cold weather or other external factors, but haven’t found a clear explanation.
When I say “itch,” I don’t mean a surface-level irritation. The sensation starts subtly, then builds into an overwhelming discomfort in my legs that only stops if I completely stop moving. At times, it’s so intense that I feel physically sick. Scratching doesn’t help; I have to stand still and wait for the feeling to pass. After a while, it feels like something releases in my legs, as if blood has started to flow again. That’s accompanied by a warm sensation that signals relief.
I’ve searched online and read about issues such as runner’s itch or irritation from tight clothing, but nothing quite matches what I’m experiencing.
My theory is that it has something to do with blood flow and vasodilation. It tends to be worse when I’m less physically active; sometimes it resolves more quickly if I’ve been active recently. But that’s not always the case. It varies from day to day.
Grateful for others who ‘get it’
Recently, though, I met another sickle cell patient who described a similar sensation. For the first time, I felt validated about the itch.
Even though neither of us knows what’s causing the issue, just knowing that someone else understands has made an enormous difference. We’d both been told by different healthcare professionals that laundry detergents or clothing might be the cause. However, we had both tested that theory using different clothes and products, and the symptom still occurred.
It’s hard to explain a symptom when you don’t know its name or cause. But connecting with someone else who “gets it” made me feel seen.
Has anyone else with sickle cell disease experienced this sensation? If you have any insight, I’d appreciate hearing from you in the comments below.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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