I don’t understand the ins and outs of this.
I drank a lot of water today only went to the pool for an hour and a half ( a storm was coming) I was resting on the couch and for up to get the mail ( got up slowly)
Started seeing spots and felt really weird. Does meds or symptoms of Ana/ssa cause this.
I’ve had heat poisoning before but that was in high school. It didn’t get that bad this time but dont feel right.
I'm no expert and I too am still trying to understand the ins and outs. I wonder if the sun exposure did this to you. I know if I'm out in the sun for too long, I end up with a major headache and extreme fatigue. I have had times when I felt dizzy/lightheaded as well. If you continue feeling as bad as you do, please call your dr. Hope you feel some relief soon!
sounds like low blood pressure to me... even if you get up slowly it can still hit you like that
As I have mentioned before, your skin is an organ and when exposed to sun reacts as if it is being attacked by an infection. This is straight from my Rhuemy. She is incredibly knowledgeable and I would recommend her to anyone. She studied at UCIrvine and then taught there. She basically said Lupus was coming out their ears. It's got the right population for great research as well as being a being a place to send patients. Make sure you use lots of sunscreen, even just going to the store...over and over if you plan to go to a pool although unless it's indoor or covered, I am not sure I would recommend it at all.
I apologize if it's not what you want to hear, but it may be one of those things that can only be done at small times or not at all.
Overheating gets me every time. at 80 degrees I wilt, shade and cooling measures or not. If you are well hydrated, it could be like me, your body just doesn't regulate well. Same thing with cold. So summertime, from 11-6 I stay in the air conditioning, and wintr avoid ealry mornings and late nights out. Black spots in your vision and dizziness can indicate high blood pressure.
Please stay out of the sun as much as possible, sounds like it is a trigger for you as so many other people. Hope you are feeling better soon. Best wshes for finding a great rheumy in the new one. hugs
If you know you’re going to be out in the sun drink lots of water the day before you venture out. The body works better if hydrated before hand. Learned that from my son in law that got back from Ira.
I cannot deal with the heat at all these days. I used to be able to go fishing in a boat all day long, all summer long. Not anymore. The heat alone makes me feel horrible. This disease sucks.
I'm severely impacted by both heat and sun, as I just explained to my rheumy. If it is over 8o degrees, even if it's cloudy and I'm in the shade- I feel sick and often have a flare if I'm out for more than 20 minutes. It makes it hard to do things with my family in the summer - so now I usually send my kids and husband out to do fun summer things and I stay back home trying not to feel like a disappointing mom.
There is a cooling vest attached to a small battery that I'm looking into trying. I've tried the cooling vests that you fill with ice packs and they don't do much for me.
I am going through the same thing I get so nauseous and a bad headache when I am in the sun. I always drink a lot of water. It gets super depressing that I can’t get out and do things
I have always had a really bad time during the summer but didn't realize why until I was diagnosed with Lupus last summer. My boyfriend jokingly says that "little Sara" comes out on days like that meaning I act like a 3 year old. Have fits over trying to dress/undress, whine about eating or moving in general, and just get incredibly cranky. I don't even feel like I can lift my feet off the ground. It takes hours for me to feel better and usually naps don't help. The only thing that helps is waiting until it gets cooler again. If anyone has any ideas of how to deal with the heat (not necessarily the sun) let me know as well!
Unfortunately we all learn the hard way what our bodies can and cannot tolerate with this disease. I do see spots all the time and sometimes. My ‘all the time’ spots are called floaters. I’ve had them since I was a teenager which is rare to develop them at that age. They are a constant nuisance and so many. They are grey globs with squiggly lines. The other spots I see (my sometimes spots) look like little bursts of light. They remind me of twinkling stars or fireworks. I get these when I bend down to pick something up or when I look to the side too quickly. When I get these bursts of light I’ll close one eye at a time to see which eye it’s coming from. My left eye seems affected by my bending over and my right eye by looking too far off to the right. I mentioned it to my ophthalmologist already. Do either of these describe the type of spots you see? The spots I see have no relation to the sun or heat. I do wear sunglasses in the sun to protect my eyes, but didn’t before my late 30s, which I regret.
Hi, here lately I have been seeing black dots also, I made a appointment with the doctor. This is something totally new to me since being diag. , in 2010. It get bad at moments , which is funny!!! It’s like , I start waving at a bug or something is flying right at my face, remind you -that people already looking at you like you are doing things that is not normal , (at lest how I feel)’ but anyway , am waving and moving around like something is on me, or flying close to my face . Doing this action around people is so embracing…LOL. I just want the appoint to come!!! There has to be something done about this, soon. Hope you get your problem taken care of soon…Beverly L.
People with lupus are sensitive to heat and/or sun. The heat seems to short-circuit my system.
The sun effects me with dizziness and light headed feeling quite often. My eyes are becoming more sensitive and often I need to wear my sunglasses in an office with a lot of fluorescent lighting too. The heat bothers me a lot but wearing 70+ sunscreen, plus sun guard clothes, sun glasses, and a hat I still get sick being in the sun. I am in a constant flare because I am that sensitive being in the sun. I live in a home with 35 trees on the lot and the sun still bothers me. These are huge old trees. You really can't be too careful. I know someone that has lupus and there are pictures of her sun tanning in LA on facebook. I don't get it but it is her life and I know she has flares. Good luck, Christy!
Is this a cream for Fibro? What is it?
I had no idea that Voltaren comes in a cream. I may have to look into that! Thank you and good luck, Christy.
Hi Christy,
It can be very confusing, when you don't experience the rash. But I am very photo sensitive, and the heat completely wipes me out. It drains me physically. Also, you mentioned you came in before the storm? Storms really play havoc with our disease. Everything I know about Lupus, I learned here, and from the first book I picked up right after diagnosis. My Rheumie didn't tell me anything - he handed me a pamphlet which I took home, read and cried.
Christy said:
I knew it could cause rashes but not heat issues
My rheumy isn't knowledgeable at all so that's why I'm seeing a new one tomorrow.
Hopefully he doesn't tell me to google a new symptom that popped up!!! Lol
I know, it's just hard for me to absorb. I didnt realize we were so sensitive to heat too. i religously apply sunscreen. It is outdoor and I forgot my hat. Even with my sunglasses the glare was too bright.
There is an indoor pool that I could join next year. I'm sure the humid 92 day didn't help.
I didn’t know Voltaren came in a cream either! That’s good news. Here’s what I just read:
Voltaren gel is a prescription topical anti-inflammatory gel used for all kinds of arthritis pain: rheumatoid arthritis, lupus, and osteoarthritis of the knees, hands and hips. People who have stomach issues from taking anti-inflammatories by mouth can bypass that problem with Voltaren gel.
Now we can bypass stomach problems as a side effect. Awesome!
I hate to write this but you can not be in sunlight with it nor can you use sunscreen or lotions, etc with it. I decided to research it and there it was all online! Sucks!
I had an appointment with my Rheumatologist today, and he said my lupus is better, but its my Fibromyalgia that is causing all my pain. He gave me a referral with a pain management doctor and another new prescription : /