I thought it was my imagination but the sun literally shuts me down and gives me the worst headaches that go into my eye. Is this normal for the sun to have this effect?
yes it is totally normal to have this reaction... most people with lupus are photosensitive... i am even sensitive to the lights in supermarkets :( :( i cant go out in the sun for more than 5 minutes without getting a reaction i get extremely fatigued with a headache and sometimes the rash develops and i get joint pain and muscle aches for days after the exposure... protect yourself from the sun at all times i use sunscreen and an anti uv umbrella and a hat when i go out and i make sure im covered up :) :) keep yourself out of the sun it can cause full on body flare ups including your internal organs xx
Its our normal ( people with lupus).... It gets me so I do my best to stay out of it...
Thank you so much. I didnt believe it but three times out and the same reaction fatigue, nausea an d paon with the worst headaches ever. I just cant seem to adjust to this new normal.
Im dealing with one of those same headaches today. I brought my girls to a shaded park but still ended up in the sun for a little while. I had to go to the grocery store after and I felt horrible, it made my body feel so beat down. I have been feeling horrible for weeks now and I just want to feel well again. Im sorry you are feeling this way too. Im dreading the upcoming work week. I feel so bad that I can't get out of this rut, I know my family must be tired of me complaining. My headache is right behind my eyes also and nothing I take will make it go away. What are you doing for your headache? Thanks, Nikki
Nikki nothing seems to help but closing my eyes and laying very still. It took a few hours before it passed. The last time it took a few days. I did take some tramadol and naproxen (was desperate for this headache to end). I hope you feel better soon. I went to buy hats in every color so I will not be leaving the house without covering up from now on.
I took the same things tonight, but the naproxen is killing my stomach. I was a little desperate. I know that some times I get a bad stomach ache from it but it usually helps so I take the risk. I just didn't want to sleep my "day off" away again. I wanted to enjoy the kids. Im a hat person myself, mostly for style and bad hair days but I need to start looking into some that are actually "functional" I guess, lol. I appreciate you getting back to me, just feeling frustrated tonight and it is nice to talk to someone that understands. I hope you enjoy the rest of your night.
Thanks Ann will check those out.
Nikki, I agree its nice to talk to someone. Yeah I wasnt supposed to be on the naproxen sincr I started the tramadol but I had some left and the pain was too much. I did end up sleeping the day away just getting up.lucky for me all kids are yiung adults so they are all doing their o. Thing
Feel better soon
Thank you Ann! Your information is always helpful :)
Ann A. said:
http://forum.lifewithlupus.org/forum/topics/sun-uv-protection-resources
You might find some of these sun protection resources useful.
There are also post that discuss how serious the damage done by sun exposure can be.
The sun is probably your enemy. The first book ever written by a patient for patients had the title The Sun is My Enemy.
Good luck in the battle.
http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazi...
Yikes duly noted. I have to do better with taking care of myself. I think I am still in denial and thats why I have adapted to this new normal
The sun is definitely not my friend. I bought a big hat, and I wore it yesterday at a family gathering. No one asked me why I was wearing it in the shade : ) I don't get a rash, but my aches and the fatigue are increased when I'm outside. I didn't think that I was photosensitive - because I didn't get a rash, but instead it affects me internally.
I’m glad you were able to connect it early on. I always found a way to excuse how i felt after exposure to the sun, because i worshipped it. Regretfully, I think I did way more damage to my lupus because I was in denial for sooo many years. I loved going to beaches for vacation. But after my last trip in April to FL, I became acutely aware of that I actually need to completely cover up from it and my new normal will no longer include trips to my favorite, peaceful places. 
I stayed in the house all day yesterday and felt fine. It was thick, overcast, cloudy day yesterday and thought I could go for a walk in the early evening without covering, and became sick to my stomach, fatigued with a headache that lasted through the night and I still have it.
Everyone, how do you feel when it affects you internally? I feel warm inside somehow. Also, I keep having back pain above my waist that feels like it is inside and not skeletal. I have back issues and have had 2 back surgeries so far so I know it isn't that. The deep ache comes and goes but the internal heat is not going away. This started before I was in the sun too long last week. Any suggestions? I called my PCP last Friday morning and still have had no return call and he still has not sent the referral to a rheumatologist.
The sun is definitely not good for me even if for just a very short period of time. Hats are wonderful but they do nothing for your arms and legs. My arms actually sting with any exposure to the sun. The other day my husband, brother and sister decided to meet at the cemetery for mother's day. My brother knowing how I melt in the sun brought a golf umbrella for me to hold and I can tell you how much it helped!! It might be a bit more dramatic that a hat but at least the umbrella can allow me to outside for a while.
Take care,
Hello,
Sun also used to bring on my migraines and headache behind my eyes. I have found out that in addition to Lupus, I am wheat/gluten intolerant. I have been off the wheat for 2 years and my headaches/pain in my scapula (back area) are gone. The sun still affects my skin, but the headaches are gone. I know this won't be the answer for everyone, but I thought I'd share just in case it could help even one person! :)
You are always so helpful. Thank you for the link.
Ann A. said:
Aunt PearlYou may like my new love - the sun sleeve
https://www.google.com/search?q=sun+sleeves&source=lnms&tbm...
auntpearl said:The sun is definitely not good for me even if for just a very short period of time. Hats are wonderful but they do nothing for your arms and legs. My arms actually sting with any exposure to the sun. The other day my husband, brother and sister decided to meet at the cemetery for mother's day. My brother knowing how I melt in the sun brought a golf umbrella for me to hold and I can tell you how much it helped!! It might be a bit more dramatic that a hat but at least the umbrella can allow me to outside for a while.
Take care,
Thank you for the link! :)
Ann A. said:
Hey S
Gluten sensitivity is so important to many people with lupus that there is a group on LWL that focuses on sharing gluten free recipes and information about living gluten free. JC our stick with us moderator even has a great blog on living a gluten limited life.
S said:Hello,
Sun also used to bring on my migraines and headache behind my eyes. I have found out that in addition to Lupus, I am wheat/gluten intolerant. I have been off the wheat for 2 years and my headaches/pain in my scapula (back area) are gone. The sun still affects my skin, but the headaches are gone. I know this won't be the answer for everyone, but I thought I'd share just in case it could help even one person! :)
Umbrella it is. I had been wearing a thin jacket to cover arms. This kind of sucks!
Christy you are so right. My husba. Just yelled at me for same reasons lol he says he is going to wrap me up himself lol
Yes--------the sun really does a number on me!! headaches & all.....