I have an odd symptom which appears at least once or twice a week, would really like to know if others have this.
I suddenly (within minutes) start to feel a combination of dizziness/flu-like fuzzy-headedness. I can't even describe it properly but I basically just suddenly feel 'ill' and flu-like in my head. I feel like I'm running a temperature in terms of how my head feels, but I don't feel particularly hot or cold, and when I take my temperature it's within normal limits.
It happens at least once/twice a week, and almost always after I've been in particular meeting rooms at work with very harsh artificial lighting, or accidentally get too much sun. I'm convinced it's the lights. It usually makes me feel bad enough that I leave work as early as allowed and cancel any plans I had in the evening.
Is this what others mean when they say they have 'mild fever'? Or does that need an actual change in thermometer temperature above the normal range?
Does anyone else have similar episodes?
Thanks in advance!
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LuckyJC
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I have severe photosensitivity and if I'm under certain lights for too long I go very dizzy, I start to shake as if I'm hypoglycaemic, I get this kind of spaced out feeling, I'll go really hot and then really shivery and flu like and my stomach feels painfully empty and nauseous including sometimes being physically sick. Without being graphic at its extreme my stomach will also evacuate 🙈 I'll then get a migraine later that day. I can list the effects but it's actually the weirdest feeling and it's hard to describe - it kind of feels how I do when I have jet lag but then it could be my jet lag isn't jet lag at all but photosensitivity from the airport it seems lol. It's very much a "spacy" feeling though - i feel all the strength draining out of me and my legs go to jelly and I'll get a hot flush out of nowhere and feel like I'm going to pass out. The reaction has varying degrees depending on lighting and how long I'm under it etc and I've described the more extreme end of the spectrum. Not sure if it helps at all or any of it rings true but if it's the same rooms each time then I'd definitely suspect there's a strong possibility of a photosensitive lupus reaction - talk it over with your rheumy as some drugs for lupus can make it worse if it is that causing it.
Thanks, yes that sounds very much like an extreme version of what I experience. I have had a few severe flare ups after days in the sun when I've been virtually housebound for days at a time, but it's the spaced-out and flu-y feeling that happens most often. Do you mind me asking how your photosensitivity was diagnosed? I have been referred to the photodermatology team at Guy's Hospital because I've also had various rashes, so am hoping they can do the tests and at least give me some certainty on what types of light are causing the problem
Funnily enough I was tested at Guy's earlier this year and they confirmed that I have full blown solar urticaria to all visible light and not just uv but based on other symptoms they advised me that they think I also have photosensitive lupus as a separate issue.
The testing is very specific in diagnosing you based on how you react. I wish I could tell you what all the tests are but I never completed them all ... I reacted so immediately and strongly across the whole light spectrum that there was no need to continue testing me so I was diagnosed quite rapidly!
The main test is really simple though - you go into a small cubicle with one of the nurses, sit on a chair facing the wrong way and they put this little laser pen thing on your back and mark it up to check the reaction. It doesn't hurt ... in my case it felt itchy and burny straight away but that's because of the diagnosis that I have and it had gone by the time I got back to the train station in line with solar urticaria. The form I had said there would be another test but I didn't get that far so not sure if that one helps pinpoint which light spectrum causes you the most problems or not. You then leave everything on your back untouched and come back the next day for the consultant to look at.
The team there are great. Very helpful, seem to know their stuff and the first doctors I've met that didn't make me feel like i was going nuts or imagining it. I've only had the one real appointment with them so far though so reserve the right to change my mind later lolol
Good luck and I hope you get to the bottom of it - keep me updated.
Oh and wear a hat or similar to your appointment! The waiting room is in this conservatory type wing so it's glsss roofed! It's uv protected but for me where it's more than just uv it was fun sitting there waiting 🙈
I have always had trouble trying to explain that feeling to family. I can be sitting having a nice conversation and it creeps over me like a shadow until I have to excuse myself and go lay down. It is difficult to have a lay down at work and at that point I can not go home early as I am not fit to drive. I do not get migraines, just a very unwell wet noodle feeling, and of course my face gets very hot and red. I like the hypoglycaemic reference - I use to be checking my blood sugar but it would be fine so quit trying to put it on that.
YES I KNOW THE FEELING AND YOU JUST HAVE TO LIE DOWN. I AM RETIRED SO IT IS EASY FOR ME I CAN JUST GO TO BED. GOOD LUCK FOR THE FUTURE CUS YOU ARE STILL YOUNG
Sounds similar to symptoms i experience which always end with a migraine.I noticed this has been mentioned in other post.maybe pre cursor to migraine which is definately connected to auto immune conditions.need to mention to u r gp or rhuemy.
At our big recent Cambridgeshire group lupus info event, our prof rheumatologist head of lupus clinic told us that light can cause a flare even through basic protective gear, and even without rash being one symptom. Instead of rashes, we can experience the symptoms you're describing. I've experienced these for decades due to infant onset lupus...eg shopping in malls, being in airports, covention halls etc has always made me ill. And conferences/meetings too. Our consultant went on to explain that receptors in our skin respond to lights of various types & travel into our bodies to cause flaring symptoms where ever (anywhere & elsewhere 😉😏). I had read this sort of thing before, but her explanation was so clear concise & authoritative. As I listened to her speak, I thought 💡💡💡💡👍👍👍👍
🍀🍀🍀🍀 coco
Hi there,
You might find our information on light sensitivity useful as it goes into the symptoms that people can experience, including fever, and how they are affected.
Thanks so much everybody, I really appreciate the feedback. Horrible that others have this, but glad to know I'm not alone with this. I find the unpredictable nature of it the hardest. I can be sat at work perfectly fine then bam - just want to lie down and go to sleep as others have said. I've noticed the only thing that really cures it is going to bed - I usually wake up fine the next morning, other than a few times before I realized it was the sun, when I was ill for weeks at a time. Hopefully it'll be a long, cold and cloudy winter...🙄 Thanks again everyone
I get the same flu like symptoms without a fever. My whole head feels like it's burning up. My ears feel like they are on fire. I get it no matter if I am inside or outside. It is like your symptoms are exactly the same as mine. Do you get a butterfly rash, hoarse, raw feeling throat, chest pains and sore joints?
Dalollies, that's exactly what happens to me! I start with a sort of pain in my throat, my voice gets hoarse, I get a hot feeling in my neck, then I feel like I'm coming down with flu. Sometimes I get a migraine. I don't always get the butterfly rash, although sometimes I do, but my joints hurt especially badly for a few days after. This happens a couple of times a month for me and can be when I've been indoors or out, at home or at work, so I don't think it's caused by light.
I know I was very photosensitive when I was in my twenties - couldn't sit out in the sun without feeling ill and couldn't be in an office with fluorescent lighting without developing a migraine, but after a long period of remission (about 14 years) before symptoms flared up again, that hasn't returned, thankfully. Wel, not that I've noticed, anyway.
Yes, that sounds like what many of us would Lupus say when we walk into certain stores with certain lighting we just feel drained by the time we walk out of the store. Large big box stores are some of the worst because the fluorescent lighting.
At work by law they are supposed to change the lighting of any areas above your desk to bulbs that are not inducing Lupus flares.
As the article suggest, you could try using the sunscreen under your clothes all over your body and it may help but remember at the top of your head, and the light beaming straight down during an office meeting in the conference room.
When I sit in a doctors office waiting for the doctor to come in to see me, I turn the lights down to dim because even those lights tend to bother me when I'm having a bad lupus day.
You can wash her clothes in the Ritz SunGard that has an SPF of 5 to 30 that last for up to about 20 washings.
Do you have friends where it goes through their clothes, because they are not a good barrier for the sun or for the artificial lighting. And as indicated before, some days are better than others on how I can handle inside lighting.
Of course outside lighting is definitely forbidden, that means the sun. I had to learn the hard way, I met a lady who had had lupus for 17 years who said she could not go into the sun because of a bad flair that lasted for about that many years. I told her "that's not me", and it wasn't in the beginning, but as I grew with Lupus throughout the years my tolerance to the sun became intolerable. I did start out with rashes on my arms and I did not know that they were sun related.
Then I started getting migraines, I started having major pressure in my chest, I started feeling extremely ill, and it finally dawned on me – it affects me too !
I think I'm like a lot of other people, we try to live our lives the way we have been used to living our lives, but we have to realize that we need a "new normal", we are on a different path.
Please make your office aware that these lights are bothering you and see how they are responsible for making your working environment safe for you. I assume it's going to be harder in the conference rooms where they may not be able to change that lighting for you, but they can change where they have the meetings where you are involved.
Good luck with your research on Lupus and lighting, and yes I do believe it is affecting you. But we learn to deal with that too 💜🙂
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