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.

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

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

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 :rolleyes: 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:wave: ..Kat

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 :angel:

Kathryn enjoy the trip, and as golden once advised me use the prednisone! Really don't worry about the short term with it, just make yourself comfortable on your trip so you can enjoy it.

I think I forgot to mention that my ANA count went back to normal after starting on medication and hasn't gone back up since. It has been suggested it was high because my thyroid was so messed up.

Have a great time on your bike trip.

Glojer

Well goldenwings that's good to know and confirms my own feeling about it. I really didn't think that sun sensitivity HAD to be a symptom of lupus ,but COULD be one of them for some people. But when I mentioned this on the lupus site I sort of got a lot of negative feedback. Thanks for confirming that for me. I really love being out in the sun and the thought of having to avoid it was depressing. I may never develop sun sensitivity, and for now I'm taking it a day at a time.
cheers ,Kat

sorry to get in so late kids,
me i am a sun lover. garden, kayak, hike, you name it. i have sunreactive lupus. however i have found if i expose myself slowly i do well and tan right up like i did as a kid.
when my fms is really kicking my fanny a bit of time sitting in the sun revives me and pulls the pain out of my body.
with fibro there are no rules. we all are so unique and different. i do remember in the first couple of years with this i did notice heat got to me. still does. over 100 and i am useless and weak.
good thread. title threw me. gosh i sure am sorry the sun hurts some of you.
be well, be silly, be love,
blue

Hiya Kat,

Thing is though, the sun in massive amounts isn't good for anyone, and the cancer scares really should be taken into consideration.

I am as white as a sheet and like to think of myself as pale and interesting hee hee !!

Seriously though, you will know yourself if you feel crummy after sun exposure. If you feel really unwell or notice changes in your skin and sensations that are peculiar, then consider that this is a sign that sun worhsip is not for you. Take all the usual precautions anyway.

Take care.

goldenwings :angel:

As usual golden great advice. I didn't have any trouble with the sun a couple weeks ago when out working on my deck. Did get a little sunburn (forgot the sunscreen...shame on me) but didn't have that awful tired sick feeling I usually get. I also didn't turn bright red in the face. I think maybe it has to do with early in the year, not being as hot and trying to take better care of myself.

Glojer

I like to get in the sun, it seems to make me feel alive some. but I do get a rash like on my arms when i do. But I didnt know this was also a sighn of lupas!

Tammy sunsensitivity can be a symptom of lupus. Some people have SCLE which is a form of lupus that effects your skin. But sunsensitivity can be related to so many other things or just be that, sensitivity to the sun. I personally think that people with autoimmune problems are maybe more sensitive at some times more than others depending on flares and medication. But that is just my opinion!

Glojer

Hi...I wanted to comment about your ANA, there is no such thing as a titer of 1:32, it's actually 1:320, which is quite significant. A doctor who said it was too low for lupus was wrong.

Here is how ANA titers are measured.

1:10
1:20
1:40
1:80
1:160
1:320
1:640

The numbers after the : keep doubling, that is how the test is done.

I don't mean to bring up an old topic, but I'm still curious as to any more insights someone has about sun sensitivity and FM. I have just developed EXACTLY what you described GodsGirl4ever, and it is driving me crazy because I have never been this sensitive to the sun. I hate being outdoors, because I have severe allergies, but being out in the sun now literally makes me feel sick! It makes all of my joint and muscle aches and fatigue significantly worse.

Problem is, I've seen a rheumatologist both for an initial and follow-up visit, and after running some tests he said that he doesn't think I have anything autoimmune, because none of my bloodwork points to it - including a negative ANA. So he just gave me this fibromyalgia diagnosis, saying 'that's just the term we use for people who have chronic pain'. :mad: But I told him at my follow-up visit that the one consistent thing I've noticed about my pain since I first had this "attack" 2 months ago is that it is ALWAYS worse after I am in prolonged sunlight, especially if it's bright and hot, and even indirect sunlight from being in a car. So I asked if there is ANYTHING that could cause problems from the sun - and he said the only thing he sees that in is lupus. :dizzy: But I don't have lupus - I have an elevated sedimentation rate, which he says he doesn't think is significant, even though it has been elevated in the past after 2 previous "attacks", one of which I responded very well to prednisone. So I have FM, until proven otherwise, but it's so hard to take this seriously when the rheumatologist didn't even take it seriously. Even though whatever is wrong with me is significantly impacting my life and my work.

I nearly jumped for joy when I saw this post about sunlight being evil, because I finally thought "yes! maybe this IS truly related to FM, maybe this is something I should take seriously" only to have the conversation go back to lupus. Sigh. I've already posted once on the lupus board, because I felt I had a lot of sxs of lupus, plus I have a lot of risk factors for it (my age, gender, race, and family history of it) but I don't belong there. But isn't there ANYONE else with FM who has this problem with the sun? Anyone??

Sorry for this long, hijacked post - I'm just feeling very frustrated and very lonely right now. :(

I have developed sensitivity to the sun. As a kid, I stayed in the sun as much as I could because I enjoyed the warmth of the sun on my skin. But even before I got my fibro dx, I started to have problems with the sun. Some of the meds I take for my fibro warn about sun exposure. I feel silly sometimes carrying a big umbrella on a bright sunny day but I get nauseous if I am in direct sun too long. I tolerate indirect, like being indoors or in the car but direct exposure is what nails me. I did have a little cheap folding unmbrella that I could carry in a purse or backpack but I still got direct exposure so I broke down and bought a large, double canopy umbrella and I carry it. When I go walking with my daughter, she gets under the umbrella with me and I don't feel so silly.

But i hate that I can't get out in the sun and play with my daughter. She's only 8 and doesn't always understand WHY I don't feel good or why I can't do something but then she tries to help me do what I can. So instead of outdoor activities, instead we do indoors activities, like crafts and reading.

Minerva...some people have Lupus even with a negative ANA, or it just could be that your ANA hasn't risen enough yet.

That is what happened to me. My first ANA was 1:80, and so they said I didn't have Lupus just FM. The more research I did, I knew something more was wrong, especially the joint pain.

I got tested again about a year later and my ANA had risen to 1:320 and I was told I had a connective tissue disease, but not enough info to specify Lupus. About 6 months later, my ANA went to 1:640. That coupled with the joint pain, sun sensitivity, new symptoms of mouth/nose sores met the criteria for a Lupus DX.

I started on meds and feel much better now :)

Don't give up.....in all my years of learning, sun is NOT related to FM alone.

Lovemythreeguys, thank you for telling me about your story. It really, really helps me more than you can ever imagine!

I have gone through so many different thoughts after this last "attack" two months ago, because I initially looked into lupus, since I had several symptoms of it, but I feel as though I have accepted I don't have a clinical level presentation of it. It's weird, but all of my odd symptoms are there, and have slowly developed over the past several months, but they aren't clinically significant yet, just "odd". So I'm trying to embrace this FM diagnosis, but in the back of my mind I wonder - so is this where I stop? Does this mean I don't try to rule out additional things? Does this mean I need to put the idea of autoimmune issues out of my mind forever? Part of my fear has been that I do NOT want to be one of those people who finds out 15 years from now that I have a serious autoimmune disease, when if they had just identified it earlier, I could have saved myself a lot of damage. But I feel very hopeful to know that you stayed on top of it, got your ANA tested regularly, and it seems as though when you did catch it, you were able to get some treatment for it before it got too bad. That is VERY encouraging!

So while I feel much better about learning about ways of managing FM, I also feel good about staying on top of everything and talk to my regular doc (who I love) about at least running bloodwork on me every 6 - 12 months or so, just to make sure if anything changes, they can catch it early. Or if I notice my sxs getting worse. I'm also going to start getting copies of ALL of my bloodwork so I know exactly what my sed rate and ANA are. Just looking over the bloodwork the rheumy ran, I realized that my TSH has consistently dropped over the past 3 years, to the point that it's barely in the normal range now. So it's "normal" but sometimes you wonder if the dropping TSH is just a "coincidence". :confused: I feel much more empowered to take control over my own medical info, and not just believing what the docs say. Because it seems as though they don't want to deal with anything until it is out of "normal" range, and even then sometimes they don't want to deal with it until it is "significantly" abnormal. It just makes your head spin!! Thanks again for your input.

Regarding everyone that has sun sensitivity, do you find that sunblock on your exposed skin helps with the aches you get after sun exposure? My husband keeps telling me to get some sunblock, but somehow this seems silly considering I don't get any major skin irritation from the sun, which is what I've read seems to happen with a sun allergy. Plus I'm brown-skinned, so it's not as though I've very proned to getting sunburned either. I just saw an allergist/immunologist who said that he felt my aches, pains and fatigue were NOT due to my allergies. So does anyone find that sunblock actually helps the aches and pains?

Hi Lovemythreeguys, I am glad you got a diagnosis. I too have been labeled with CTD. My rhuemy says I am right at the line for lupus but have not crossed it. My ANA was 1:320 when my GP sent me to the rhuemy. It was I think the 1:160 a few months before that. I have severe joint pain the rhuemy is always trying to treat, mouth sores, incredible fatigue, red mask on face, rashes, and sun sensitive. They all never happen at the same time!!! My ANA count went to normal and has stayed there. That is assumed because of treatment, red face and mouth sores pretty much all the time. BUT.....the sun sensitive thing seems to have eased up this year. I usual get bright red when in the sun and have that sick feeling and worse fatigue but this summer 'so far so good'. My rashy places and my red face have eased up some to.

I don't know what all this means, I think as our autoimmune systems keep fighting us we keep ever changing. I'm not complaining though I am going to enjoy it while I can.

Glojer

Minerva, good for you for advocating for your own health. If you don't stay on top of things so much can be missed. I think you have hit upon something with the thyroid. Thyroid disease is also and autoimmune problem and I really believe that working and getting my thyroid in a better range for me has been a tremendous help. I have fought to get my tsh down to what feels good for me, but always knew my free T3 needed help. I finally had a chance to discuss all this with my GP and I started on cytomel (T3med) and have been doing better since then. I am not saying it has cured me but it has helped my body to work more efficiently and perhaps has contributed to my lack of problems in the sun.

It is all a guessing game, but keep up the good work of staying on top of your health care. And getting copies of all your tests and bloodwork is so important, especially if you start a journey to improve your thyroid.

Glojer

I was diagnosed with Fibro over a year ago. I no longer take any meds for it. I only took meds for 1 month and now I use natural remedies. To my understanding from research having Fibro wouldn't make you sensitive to sun light. The sun actually makes the joints feel better if exposed for a limited time. However, if you take meds for Fibro being exposed to the sun can make you sensitive to it and even feel sick. Also, if you use sun block it could do the same thing. The medicines, sun block or lotions that you may have on your skin at the time of sun exposure penetrates in the skin to the blood stream and cause toxins to build up. That's what causes cancer and what makes you feel bad not the sun. Try using an all natural sun block or nothing at all on the skin during sun exposure. No more then 15-20 mins exposure..you will be suprise of the tan you get and how good the sun actually feels. Exposure to the sun is an absolute necessity. (Limited exposure)

Hi! I am on the other part of this big world but i guess we still have the same pain with lupus so will share with you my story. We lived in tasmania and I was very bad with lupus, couldn't make any commitments as i didn't know how I would be etc. and to spend the rest of my life like this was very scary, the pain level was high and I was being put on so much medication I was forgetting who i was. This changed when we went on holiday to a warmer state, the pain got easier and I still had medication when we went home. Thought about it and realized my body responded to warmer climate so rented out the house, bought a van and left to be a gypsy. On my travels i met several people who recommended I wear Lapis Luzuri crystals, thought it was a bit far out, but had a bad spell of lupus that sent me to the hospital and bad advise that was enough to frighten me to try anything so bought the crystals and wore the necklaces for 5 weeks then was feeling great, that was 18monthes ago and i have had no medication since then. i still get the odd pain and redness on face and use mineral makeup which helps. I am now having alternative treatment for breast cancer so the battle to get healthy is still on. We bought a motorhome and was travelling but temporally settled down on the Queensland Coast in Australia where the sun and beaches are tropical paradise in healing me. Best Wishes, Lynn