"One of the things [he] had always found hardest to understand about humans was their habit of continually stating and repeating the very very obvious, as in ‘It's a nice day,’ or ‘You're very tall,’ or ‘Oh dear you seem to have fallen down a thirty-foot well, are you all right?’… ‘If human beings don't keep exercising their lips,’ … he thought, ‘their brains start working.’"
-The Hitchhiker’s Guide to the Galaxy
I am never sure quite what to say when people comment on my hand temperature when we shake hands. My internal reaction is often a mixture of, “No kidding,” and “Do you seriously think I am unaware of that?” Yes, my hands are cold. And, like so many other seemingly unrelated things in my life, yes, it’s because of lupus. Or rather, it’s because of Raynaud’s Phenomenon (often simply called "Raynaud's"), a disorder that can, but certainly does not necessarily, occur in conjunction with lupus.
Raynaud’s is thought to be a disorder of the autonomic nervous system. Autonomic disorders occur when the part of the nervous system that controls most of the automatic stuff happening in the body—heart rate, blood pressure, etc—goes nuts. How and why this happens is (say it with me now) not well understood. What is well understood is what actually happens in Raynaud’s patients. For whatever reason, the blood vessels in the patient’s fingers and/or toes squeeze shut. This prevents a normal amount of blood from entering the fingers and/or toes. Since every part of the body needs blood to carry life-sustaining oxygen to it, this causes problems. Best case scenario, the fingers/toes turn white and then blue. Worst case scenario, the tissue in the fingers/toes die, leading to a necessity of amputation.
Raynaud’s patients are divided into two categories: those with Primary Raynaud’s (aka Raynaud’s Disease), and those with Secondary Raynaud’s (aka Raynaud’s Phenomenon). The difference between the two is that patients with Primary Raynaud’s do not have another medical condition (like, oh, say…lupus) causing the problem. Those with Secondary Raynaud’s do. It goes without saying that all Raynaud’s patients are more susceptible to frostbite, which also occurs when extremities do not receive enough blood to keep them alive. But a Raynaud’s patient does not need extreme cold to trigger the symptoms. Even an air-conditioned room can be cold enough to turn fingers and toes all sorts of interesting colors. Some patients must wear gloves at all times; others just have to be careful about exposure to extreme cold. Like so many disorders, Raynaud’s spans the severity spectrum from a mild nuisance to a serious health problem.
Because the cause of Raynaud’s is not well understood, the treatment options are limited. One of my doctors gave the oh-so-helpful advice that I should try to keep my hands warm. Thank you, Dr. Obvious. For people with more serious cases, doctors prescribe a class of drugs called alpha-blockers, or other vasodilators. Vasodilators are simply drugs that attempt to force blood vessels to stay open. These drugs all have side-effects, so they are not used for mild cases of Raynaud’s.
So yes, my hands are cold. Yes, many other lupus patients’ hands are cold as well. If you see us wearing gloves inside, don’t think that we’re trying to bring back an accessory that went out of style with petticoats and bonnets. Raynaud's is just one more way lupus reminds us that we’re not like everyone else. As I may have mentioned before, lupus sucks.