:confused: I have just been diagnosed with lupus, but am still in denial. I for some reason feel like I have fibromyalgia. I have a couple of questions and would appreciate if someone could help me. When I am out in the sun for a long period of time, I never break out in hives. I feel very sunburned, although I am not at all, and my skin tingles. Do any of you do that? Also especially at night when I am lying in bed watching TV, my legs and my arms jerk involuntarily just out of the blue. I feel very fatigued, achy, and like I have the flu when I am having a "flare up."
Thanks!
Lola

Dear Lola, Many, many people with lupus are photosensitive, meaning exposure can trigger the whole gamut of lupus-related problems, NOT just skin problems. At first, I just felt tired & drained & "burny". Then the rashes started, but months after sun exposure. Then the whole cycle of sun & resulting rash really speeded up. At which pt. I finnally thought to myself, Duuuuh! Seems like sun is a factor here. :rolleyes:

But I may have had an easier time accepting the news due to my age at the time = 47. But I'd lost so many opportunities, put pressure on my marriage, had to stop commuting to the job I loved, etc. So I was more than ready to get help. And I'd give a lot to have those years back, but life doesn't work like that... So I can only hope for you that knowing what you know SPARES you years of problems & confusion---and allows you to maintain your health optimally.

Are you on medication? Some of them, Plaquenil for one, can take some months to build up to full effect. Has your dr. cautioned you about sun? Is it maybe that news you're finding impossible to accept? Or just the whole ball of wax? Anyway, wishing you well. I hope you post more soon! Bye for now. Sympathetically, Vee

I am sure finding out that what you say about the sun and the problems it can cause is a fact. Tired, drained and burny, fierce aching, jerky limbs, and feeling flu-like describes me. I plan on staying out of the sun as much as I can. And yes, my doctor did caution me about the sun, but I didn't pay enough attention to him. I learned the hard way! By the way, I am seeing a rheumatoid specialist for this. I didn't mention in my first post that I also have acute pancreatitis. I haven't had a flare up with that for almost 4 years now. I was being admitted to the hospital an average of 2 times a year for that, but for now at least it seems to be in remission. I am also hypothyroid, and I take synthroid for that.
I am taking ultram during the day for my arthritis pain, and 1 hydrocodone at bedtime, along with taking plaquenil 2 times a day. I think the reason it is so hard for me to accept is because of the other things that have happened to me and my family just this summer. My mom died June 23rd and then my sis and I had to put my dad, who has dementia and is cripple, into a nursing home, and then my husband lost his job that he has had for over 22 years. I'm thinking, you're kidding, now this?!! Anyway, if there are any pointers that you or anyone can give me, I am more than willing to pay attention now. I know this is a terrible disease and I want to do everything I can to make it more bearable. Thanks a bunch, Lola

Dear Lola, Try sun avoidance, meaning really limit that midday sun. Look for hats with tight weave & good-sized brims. Long sleeves & pants (not of "gauzy" material). No tanning beds either! Wear sunblock, making sure to reapply often. (I wear a facial block of SPF 32 under my foundation, which adds even more SPF.) Take care on long car trips, too, as sun coming thru windows can fool you.

Here's a good hat tip I learned from a saleswoman. You can make a "one size fits all" hat fit if you buy ones that have an inner band. Use a needle & thread, and sew tiny tucks into the inner band. I make tucks in the back & sides (to avoid red dents in my forehead that show when I remove the hat).

To be honest, I hated having to make these changes but am very glad I did.

Please accept my condolences on the loss of your mother and for all you're going through with your father. It's so hard to accept that we can't change the things that happen to our parents, that we just have to muddle through, doing the best we can for them.

Like you, we lost our mom a few years back and had to put our dad into a nursing home (he had Parkinson's with dementia). It took my sister and me awhile to realize the the best we could do for our dad was to monitor his nursing home care, and to help the staff understand his quirks & his illness. Sometimes that meant being nice to staff we felt weren't understanding his plight; but then we'd stand back & realize how overworked & understaffed THEY were. So we'd watch for basic cleanliness, for glove-wearing, etc. i.e., back to the basics.

My heart goes out to you & your husband on all that you are going through, both individually and as a family. Sincerely, Vee

I learned the hard way about the sun and how it does people with lupus. Now I have a new respect for it. As much as I whine about the lupus, I still know how fortunate I am every time I look around me. When I go out to see my dad, I see the most pitiful people. He's not in a regular nursing home. He is in a State Health Center that is run more like a hospital. He likes it there somewhat, so that is a load off.
My main concern about myself right now, is that I have been diagnosed with mild lupus, and I don't know :confused: if it will stay the same or progress to something much worse. I've gotten to where I think about it 24/7. I need to get a life! Lol.
I'm so glad I found this board. I really appreciate the support! :)
Thanks,
Lola

Lola, Hi, again. There are quite a few people with lupus who seem "born to be mild". That is, given proper medical attention, check-ups, appropriate meds, and necessary lifestyle changes (for many, sun), of course. It does not *necessarily* progress, is the point. Since there are OTHER diseases that are by definition degenerative, this is a PLUS.

And even if you do have flares, or sprout new problems, medicine today is so much better than it used to be. (But I hope you don't go there)

If you ever have the urge to read more, there are some excellent hardcovers that you could borrow from a library or buy at a bookstore. Two authors come to mind: first, Dr. Daniel Wallace, and second, Dr. Robert Lahita. Both are excellent. Also the "Resources" tab above, or the Search Box above, can take you to more info about lupus. I think it might help to read true experts stating that many people can stay pretty stable.

Hang in there! Bye for now, Vee