The Sun is Evil - Fibromyalgia Message Board

GodsGirl4ever06 · 04-28-2007, 05:03 PM

Okay, so I went to a city wide garage saleing event this morning and walked a bit. It was very sunny. I tried to stay out of the sun as much as possible but it was no use. The sun makes me sick, literally. I feel so crummy from the sun. Which is why I never spend long periods of time in the sun. Does anyone else have this problem from the FMS? Because, I know it is something related to lupus, but what about FMS?

I also know that low grade fevers are related to lupus, just like the sun thing. I have both of those symptoms. I've been tested for lupus 3 times. I am present for the antibodies, but my titer was 1:32 the first time, which is too low to be dx'ed to some doctors and then I had the antibodies the next two times, but the titer was as low as it gets and practically nonexistant.

So, I know low grade fevers can be a symptoms of the FMS, but can the sun thing be too? Or would it be just way more equated to lupus? I just need some feedback here, see how others of you react to the sun.

kathryn+2 · 04-28-2007, 05:22 PM

Sounds like lupus to me. I was just diagnosed with it. My tests came back normal for the longest time (2yrs I think), but recently came back with an ANA titer of 1:40 speckled. Still on the low side but my rheumatologist put all my symtoms and tests together ( icluding the prednisone challenge, have you done that yet? If you feel better on the prednisone it's most likely an autoimmune disease),.and she DX'd me with lupus. All my muscle/joint pain went away on the prednisone. But I swear everything you are describing points to lupus.You should ask your Dr. to put you on prednisone to see if it helps. It took about 3 days to really kick in ,and then I gradually weaned off. I was actually relieved when I was finally diagnosed. I am now on a drug called placquenil that is supposed to do wonders for your joint pain and fatigue. The bad news is is that it can take up to 4 mos. to really feel a difference. Are you seeing a rheumatologist or a family Dr. right now?
good luck...Kat

Glojer · 04-30-2007, 09:46 AM

Hi Godsgirl and Kathryn,

I have had an ANA count of 1:320 speckled pattern and lots of joint pain and I take prednisone now and it helps my joint pain or at least did for a year or more. I was also on plaquinel at first but had an eye problem and had to stop taking it. It was discovered the problem was not from plaquinel though. I also have that getting sick in the sun thing but I don't have low grade fevers. I get mouth sores and other lupus symptoms but my rhuemy has never diagnosed me with lupus, he calls it Connective tissue disease and says it is almost lupus, just right at the line but I haven't crossed that line yet. I don't test positive on some of the other lupus blood tests.

My ANA count has gone down to normal now and I am treated for my joint pain which increases all the time. I take precautions in the sun and try not to be in it too long. What I am trying to say is....Godsgirl I think you should be tested for lupus but if everything comes out OK, I think you should still take all the precautions from the sun. With fibro we do have an autoimmune disease and they can all overlap and the sun can be bad for you even with fibro.

Kathryn, I did see your post where you said you were finally diagnosed, I am glad you finally got an answer although having lupus is not what we hope for. I haven't been on the lupus board for a while, but if you haven't checked it out yet, Veej is a great source of info. She can recommend a great book by Dr. Wallace. Don't leave us though we would miss your input. By the way did your doc recommend regular eye exams by an opthomologist? I got them every six months while on plaquinel or maybe it was every nine months. Anyway it is very important and be sure they do that awful visual field test, thats the one that got me, I finally failed it and it was thought the plaquinel was the cause. It turned out to just be my old bad eyes. But do please keep a check on that.

Glojer

kathryn+2 · 04-30-2007, 08:42 PM

you know what Glojer, I'm thinking I have "almost lupus" too. What my Dr. said was "I'm not diagnosing you with lupus ,but I'm treating you as if it is lupus. So of course all I heard was the lupus part and ran with it.

But like you ,my main problem is joint /muscle pain,abd fatigue. So far I don't have problems with the sun. My ana titer was1:40 speckled which is on the low end for full blown lupus. I kind of wish she had mentioned "connective tissue disorder" to me. It might have deflected the lupus diagnosis a bit. I know when I ask questions on the lupus site people on there are surprised I don't have problems with the sun ,or the rash etc. (by the way ..veej has been very helpfull). so maybe I don't really belong on that site after all. I don't know where I belong

Well guess I'll just muddle my way through and bug all of you

.

Starting the big motorcycle trip to Colorado on Friday. A little nervous about it ,but we're going to take it slow and easy ,plus my Dr. okayed it and gave me an "emergency" stash of prednisone,which i probably will have to take. Just for a week though. Even though it helps me tremendously it makes me nervous to be on it long term.A week is okay though (plus weaning off time ).

thanks again...guess you're not quite rid of me yet

..Kat

goldenwings · 05-02-2007, 08:11 AM

Hi thre,

I don't think being over sensitive to the sun is necessarily anything to do with lupus, fibro and indeed any other illness. Some people are sensitive to it and some aren't. Please don't worry about it being illness related.

Just to say, not all people with lupus have problems with the sun, it is about 60% who are. If it was lupus related, you would certainly know about it as I did at one time and this is why I stay out of the sun now.

Take care

goldenwings