What Doctors Don’t Always Share About Raynaud’s

CaduceusI recently moved and found myself going through boxes (and more boxes!) of old files.  One had notes on my personal medical history at the time I was diagnosed with Raynaud’s.

In the process of learning I had Raynaud’s, I kissed a few froggy doctors, but eventually found a couple of keepers.  The first keeper, Dr. Nelson, became my internist after leaving an HMO where I felt like a number and had the scare of my life in the course of my diagnosis.  In my file were notes from one of our phone conversations in which I learned that Raynaud’s is a conditioned response.  Here’s what he told me:

“The more you activate Raynaud’s, the more active and sensitive it becomes.  But the more you keep it asleep, the louder a wake-up call it needs and the alert button goes off less often.  This process won’t be immediate or necessarily that obvious as it occurs, but it’s true.”

In essence, I learned that the more attacks you have, the more likely you are to have more frequent attacks and they can get progressively more severe. Repeated exposure to the cold and stress can aggravate the condition, increasing the frequency and severity of attacks over time.

By the same token, if you can decrease the onset of attacks, you are less likely to trigger future ones, and while they won’t necessarily go away, they can become less frequent and less intense.  That’s why it’s important to dress properly, avoid exposure and stress when possible (gloves in the freezer, etc.), and make whatever lifestyle changes you can that may help reduce the onset of attacks.

When I was first diagnosed, I thought “Now I understand why my hands hurt so much while I’m making meat loaf.  I’m not crazy, there’s a medical reason for this!”  I was so relieved, and just thought I could keep doing what I was doing now that I had a rationale for why it was painful – I thought I could just accept it and learn to live with it.  After hearing this new information from Dr. Nelson, I knew I had to rethink several things in my life that were triggering attacks:  The kitchen was an obstacle course, standing on the train platform commuting in cold weather was challenging, and going without gloves in weather below 60 degrees was not smart.  Now I had to pay attention to these behaviors or I’d risk making my life more miserable.

One question I’m asked a lot is whether or not Raynaud’s gets worse over time.  I generally respond that some sufferers do find it worsens over the years, others find it gets less intense – there’s really no definitive pattern.   But we’re not helpless on this issue.  More doctors should advise us that we do have some (albeit limited) control over the condition.  And if we don’t take control, long term – at the extreme – we can do permanent damage to our blood vessels.

Wish there were more doctors like the late Dr. Nelson.   He ended the same phone conversation with this thought:  “Doctors are beginning to learn from their patients…”

2 Comments

  1. I fully agree with this.

    I had a lot of attacks the winter before last and ongoing incidents throughout the seasons of the following year.

    Last winter I was VERY careful, using gloves and heated wheat bags to keep my hands warm. As a result, I feel that this spring and summer things have been a lot better. I even noticed that a characteristic redness that seemed to endure on my worst-effected right index figure has now gone.

    So, prevention is better than cure!

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