[Maura]

Hi,:worried::worried::worried::worried::worried:

I have been feeling really sick lately. Lots of muscle aches, extreme fatigue, chills and so depressed.
The weather out here is warm with lots of sun.
I often wonder how people living in warm areas keep one step ahead of the sun. We are not used to warm weather every day and I have a hard time avoiding the sun. I wear sunscreen all the time with a hat but sometimes I do forget the hat.
Do you always use sunscreen on your hands and wrists too?
I think what I am trying to find out is whether a little sun on your hand can provoke a flare?

What I also don't understand is how one knows that one is sun sensitive if there is no rash? Does anyone know?


Hugs

Maura:sad::sad:

 

[Katharine]

Hi Maura,

I have also been feeling pretty bad the last few weeks (same weather as you). I don't usually go out at all during the day but have had to for an hour each Thursday. Well protected, sunscreen, long sleeves etc.

I haven't had as many visible photosensitivity issues this year, they reduced with plaquenil, but, like you I wonder if just the actual light is getting to me.
I'm not sure if the worsening of symptoms is linked to that or if it's just plain bad luck as my disease activity isn't really under control and hasn't been since I came out of remission.

Katharine

 

[sadieone]

Hi Maura,

A lot of my sunsensitivity was due to my meds. I would feel miserable even with sunblock on and sweat perfusely.

Now I put sunblock over my entire body after showering and on real hot sunny days i wear sunprotective clothing. With all of this i still do like Katharine,, try to stay in during the day at least til after 3pm.
If i have to be out in the sun i carry my sunblock wth me and top it off after a couple of hours in the sun.
WE just have to play it by ear until we are comfortable in warm weather.

Frankly, i like it warm rather than rainy and cool. My joints and back keep me from moviing very well when it gets to rainy or cool.

Good luck

 

[Maia]

I will get the sun sensitive rash especially on my forearms if I forget to put sunscreen on. But other times, I won't get a rash but will get a much more intense flu like feeling where everything aches and I become extremely fatigued from spending too much time out in the sun. I try to avoid being out between 10am and 3pm as much as possible, and limit time in the sun.

My achiness can start to worsen within just 1 hour of being out in the sun, so I know it's due to the sun. So if your symptoms worsen quite predictably with sun exposure, that's a big clue that you are also sun sensitive.

 

[deNile]

Hi,
When you get that flu like feeling when you've been in the sun a bit you know you shouldn't be there. It took me a while to put it together as I may not show symptoms for over 24 hours. My mother had it put together well before I did. I rarely get rashes, I just get sick. It wasn't fun while I lived in the desert but I have a good regimin now. I put on sunscreen in the morning and/ or after showering. I have sunscreen hanging off my purse, in the car, at every exit door of the house. I keep a bag packed with my purse with a hat and long sleeved white shirt that buttons down the front, so I can let a bit of air in if it is too hot. I take it when ever I leave the house and often drive with the shirt wrapped around the exposed arm. I also have a hat that ties under the chin for windy days or traveling. I counted the other day and must have reapplied sunscreen about 7 times. I was forced outdoors more than ususal due to end of year acctivities with the kids. I do love a good rainy summer day, but also have arthritic and raynauds problem with the cold. Mostly during a dry summer I just try to stay inside between 11 and 5ish sometimes later.

Hope this helps
Sherry

 

[tinkerbell222]

Sunscreen for women of color

Thanks friends. Being a woman of color, I have never worn sunscreen, or protected my self from the sun to much. But I notice I get fatigue, achy and headaches after I come inside. I will take better care of myself. I'm going to talk to my doctor about a sunscreen lotion.

 

[alisonr]

I too have been a lot more fatigued when its been nice weather, and i do put sun screen on, think it just goes with the lupus. I'm just glad that my nasty rash hasn't reappeared. I'm also a regular wearer of long floaty skirts and linen kaftans - try to keep much of me covered as possible. I do however, put sun lotion everywhere and am slightly parnoid about how often i should re-apply. Should it just be every few hours (like normal people!!)

 

[acard]

8)The sun is our enemy and I hate that I have to say this.
I was a sun worshiper ALL my life and now it makes me so very sick. My dr. just told me recently that you even need to wear sunblock inside as the uva rays penetrate our windows and window covering. I was in my living room and got sunburned. When in doubt just avoid it.
Sorry to be doom and gloom


Not so sunny-Becca

 

[Douglas]

Sun plus me equals agony.
Sun block on my face but because I wash my hands occasionally I have taken to wearing gloves whenever I am outdoors. I found some very light yellow leather gloves at a good price so with that and the hat that is spapled to my head I am doing OK outdoors. Now to just remember the pills....
Douglas+

 

[FizzyKiss]

Living in Southern California I deal with the sun A LOT.

I have noticed that when I'm out, like for Mother's Day I am suffering for a few days afterwards.

I also get horrible sunburns, even with sunblock on, so I try to stay out of the sun during the worst part of the day.