Raynaud’s can be an early indicator of a number of connective tissue illnesses, including lupus. My wife has Raynaud’s and so does another member of her family. Strangely enough, I think I have it as well, to a lesser degree.

Those with Raynaud’s Phenomenon should avoid smoking, cold temperatures, intense vibrations, and emotional stress, so don’t argue with someone on a Winter train ride in France.

In our house, we make sure we have warm socks, and if it gets really bad, we just soak our hands or feet in some warm water. We also bought one of those parafin wax skin treatment machines. My wife likes it a lot, and she says it does help, but it’s a bit of a pain to use it.

Fluorescent Light Bulbs and People with Lupus

Some reports suggest that there may be enough UVB radiation in fluorescent light bulbs to cause photosensitivity in people with lupus. Are you one of the people affected by fluorescent light bulbs? Please share your story with us at advocacy@lupus.org.

This has been one of those things that just dumbfound people when they see it. Jenny is super sensitive to fluorescent light. She will usually turn red and rashy within about ten minutes of stepping in a Target.

Oddly enough, the most dramatic example of this reaction happens in the doctor’s office. Those small brightly lit rooms make my wife butterfly almost immediately. I remember that some of the doctors were amazed at how quickly it happens. One doctor actually turned the lights out and then went to get a colleague in order to show him how quickly it happens.

I’ve seen articles about how we will eventually move almost entirely to fluorescent because of the impact on the environment. I wonder how that will affect my wife. Not only does she butterfly but she also tends to get headaches from the fluorescent lights. Maybe the technology will get better and the spectrum of light will be a bit more friendly for light-sensitive lupus patients.

If you have had any experience with this, I do encourage you to share your comments here and email
the folks at the LFA at advocacy@lupus.org.

It’s very frustrating when your specialist is two hundred miles away and doesn’t always respond to phone calls.

It looks like a chemical burn, but she hasn’t handled any chemicals.