Head pain

I understand bad flares. Are you on any steriods to help calm your flare?

If this headache is worrying you then by all means complain to your doctor. That's what you pay them for-to make you feel better.
I remember when I was first diagnosed I'd suffer from terrible headaches that lasted all day.
I noticed you have possible lupus too, are you using sun protection and avoiding all UV lighting (fluorescents and halogen)?

I spend most of my days inside the house too. My bedroom/sitting room has heavy blinds and is lit with LED light ropes. I use LED light ropes because it's getting harder to find light bulbs that are not fluorescent core. I also have trouble with incadescent bulbs if they are 3 way type.

I used to do the beach for vacation. I gave away my swimsuit and capris. I wear my shorts only inside the house.
I miss the sun...sigh.

People are affected to a different extent -- it all depends on your personal manifestation of Lupus. I couldn't live without light - grew up outdoors in south Florida. Now in Georgia with the hot summers...I can go outside mornings and after 5:30 pm without too much of a physical reaction.

Now that means I'm doing something outside in shorts & t-shirt, and keeping well cooled with shade & water. I can't do midday when sun is raw and heat is too much -- then I immediately break out into a red sun rash, and if I let that go it'll turn into a nasty lupus flare which I totally avoid if at all possible!!!

I won't generally spend more than 1.5 - 2 hrs a day outside, then skip a couple days before I do it again. Not sitting by a pool, not boating -- reflection off the water burns me fast!

My house windows -- well, the drapes are usually open to let the light in, but I'm not sitting in the sun. I do avoid putting florescent lights in the house. And I have the darkest legal coverings on my car windows.

My eyes are actually much more light sensitive than my skin -- I'm only without sunglasses on *very* overcast days. Otherwise I'm squinting big-time...if I can get my eyes to open at all.

So that's how it works for me...although cautious, I haven't yet gone the route of the expensive 50+ rated clothing, etc. My fear with that stuff is that it will block the sunlight, but also increase the heat -- and heat is as much or more so a Lupus enemy!

Everyone's experience varies, you just have to try slow exposure and see what your body is comfortable with. You may get a rash, or simply find you fatigue increasing, or something else altogether! Fun, fun, fun!

My eyes are definitely hypersensitive. I have sunglasses stashed everywhere. I wear them outside, driving, 365 days a year. I can't be without them. And they Re not enough sometimes. I guess I have noticed some changes. Sun burning faster than I used to. I thought it was just the medication (?). And a prickly heat looking rash at times.

Hi, Jen719 -

If/when you have a chance to explore the head pain issue with your doctor, would you be willing to share the outcome?

I was getting weird head pains in February, and attributed it to a CellCept dosage that was too high for me. After being on a lowered dose for a a few weeks, the random pains (NOT headaches) subsided a bit, but they still come on, randomly, and they kinda of freak me out. Like you say, they are not headaches. I get random areas of pain on my head, and sometimes it feels better if I actually apply pressure to the painful area! Wierd!

Like you, I've been hesitant to talk to my rhuematologist, as I, too, don't want to be labeled a "problem" patient.

This disease blows!

Best regards,

Nina