View Full Version : A few questions... florescent lights, being emotional, and sense of smell
08-12-2012, 05:31 PM
I keep forgetting about the darn florescent lights. Today I went out to Jo-ann's and then the grocery store. I spent a couple hours out all together and hubby stayed home with the kids. I was so excited to have some time alone and just take my time, etc, etc. Of course, by the time I got home I was miserable!!! My malar rash was bright angry red and stung like crazy. My muscles in my legs were so sore I could hardly walk up the stairs to my room. I collapsed in bed and my joints just throbbed and my kidneys were hurting, I couldn't even fall asleep I just hurt so bad everywhere. I don't think I even get that bad out in the sun! But, I guess I don't spend 2 hours in the sun without sunblock on anymore. I'm still miserable, but the motrin and tramadol have helped a bit.
So how do you cope with the big stores? I mean, grocery shopping is a necessity, so I can't exactly not do it. I've been doing a lot of my shopping online for things I can, but sometimes you need to go out.
I've also been extremely emotional lately. I've been crying over everything and just down a lot. Does this happen with a flare? I am taking zoloft already since I had bad PPD after having my youngest, but I don't feel depressed. Just overly emotional.
And, my last question. I keep thinking I smell this really horrible smell and no one else seems to smell it. Like the smell of something decaying? Or, when I do smell something bad, like changing a poopy diaper, it smells 100 times worse then usual, and no one else thinks it smells that bad. Could this be related to lupus at all??
The very first thing I am going to tell you has to do with he smells that no one else can smell. You need to make an appointment with a neurologist and have that looked into. I don't want to scare you but it is something that could be very serious (or not) and it can't be put off. If you want to talk more about this feel free to PM me and we can discuss it.! I had the same thing happen to me and I put it off for way too long
Aa for the fluorescent lighting, the answer is ssimple when you get in the habit of doing it. You treat going to the stores or work just like you would going in the sun. Strong sunscreen on (even under where clothes would be unless you are wearing UV Protectant clothing) and a hat. Remember that you are dealing with the same UV type rays that are put out by the sun and it should be treated as such.
Talk to your doctor about changing your anti depression meds as well. For some of us the Lupis actual messes with he chemical make-up in the brain and it takes several attempts at finding the right medicine/dose to stop the years and overly emotional moments
Hope this helped a bit
08-13-2012, 03:22 PM
I know what you mean about the feeling you get after being in the sun. I sat out in the sun on Friday for a memorial service, and then felt miserable that evening and I haven't had much energy all weekend.
Could the bad smell be something as simple as a sinus infection? Have you checked that angle?
Marla made a good point that I think we discussed privately. Although I would see a Neuro first an Ear, Nose and Throat doc would be next on the list. I tend to go toward the neuro just because of what happened to me. My smells were somewhat different than yours and always the same smell so a sinus infection could be very possible
08-13-2012, 06:08 PM
I also sometimes smell something burning and there never is anything actually burning. I have an appt with the endo on Friday so I will bring it up there and see what he thinks. My mom has epilepsy so I guess it's always worth checking out.
Maybe there is an infection in there somewhere? I've had some weird noises in my left ear, like when you put a seashell up to your ear. So maybe there is something going on there.
I feel like now everything that happens to me I think, omg, it must be AI related! lol
08-14-2012, 06:26 AM
I have the same smell and emotional feeling. Is it really that bad?
08-14-2012, 04:50 PM
*sigh* I guess I need to get looked at about this. Today I had to lay down as I was just exhausted all the sudden, and I had some jerks/twitches in my lower back. (I had it one time over the weekend as well, but just thought I was tired.) I felt scared and like I was shivering but I wasn't. I called the Dr to make an appointment and while I was on hold I forgot who I was calling and why so I hung up. Couldn't remember the cat's name for a minute. Then just felt awful afterwards and started sobbing and had to sit down most of the rest of the day. (Can't wait to go to bed tonight, I'm beat) So, something isn't right.
I decided I'll stop taking the tramadol I'm on since I read that it can have a bad reaction with zoloft that I'm also on. I'll call the Dr. in the morning and make an appointment.
Never stop taking any medicine completely without Dr. Permission. Many of the meds have to be tapered off of or the side effects can be disastrous. Call and talk to the Doc and see if stopping them cold Turky is OK
08-15-2012, 05:00 AM
i like many here, am not a doctor.
i like many here, read closely to peoples posts.
i like many here, watch my own medical condition closely.
i have come to the conclusion that lupus has removed my ability to properly contol emotions.
either good or bad.
i go from no emotion at all - to - full throttle emotions.
i can stay on no emotion for a long time.
i am really cold to emotion, no response.....
then all of a sudden, without warning...
full emotion. no holding back.
when it is a good emotion it seems acceptable.
but others find it hard when it is a bad emotion.
i find it awkward at both extreemes.
btw. i am on anti depressants.
i believe it is not because i am depressed...
but because part of my brain needs this type of medication.
I'm like Steve, I have always been like this probably not as bad just semi-detached from emotions. Like him I am on anti-depressants, not because i'm depressed, but because the steroids made me so crazy. Over all it made me balance out and control my extreme emotional episodes. No matter where I go I out on sunscreen nuetrogena makes a good affordable sunscreen thats light and not greasy. If I know theres a chance I might have to be sitting out side I have to think ahead of time, like my grandmothers funeral, and request a tent. Im actually glad I read this because I didn't know large grocery stores used florescent lights, I learn something everyday. Talk to your doctor about your emotions because the zoloft might not be working for what you need it do, again not a doctor but from personal experience my anti-depressants are not as effective anymore.
A. G. Moore
08-16-2012, 02:18 PM
I related to so much of what you wrote in your posts ( 8/14 and 8/12), which I just read a couple of hours ago. Hope you don't mind a long comment, but so much of what you wrote sounded familiar to me that I thought my experience (20 years) with lupus might be helpful.
As the psychic in Poltergeist (1982 movie) famously said, “Stay away from the light”. This isn't fair, and I'm looking forward toward the day when photosensitive people can have equal access to public spaces. But that day is not here yet. Fluorescence is everywhere. A simple UV shield over the light source would do much to protect us, but so far these are not required. We're going to have to change that, but until we do, we have to protect ourselves. If I have to go to a store I wear long sleeves, pants and a hat. And as soon as I feel warm, even if I'm on line with merchandise, I put down my carefully chosen items and leave.
As for your emotional and cognitive difficulties: many times I know a flare is coming because I get irritable. Usually I wait to see if other symptoms appear--muscle/joint pain, rash, GI discomfort-- before I medicate, but the mood disturbance is often an indication that the flare is going to be a doozy. You and I are not alone; some lupus experts suggest that as many as 50% of those with SLE experience similar emotional/cognitive disturbances.
As for the twitches, this is one I haven't heard a lot of people complain about, but I have experienced them myself and my GP observed the phenomenon when I went to her in a panic the first time they appeared (couldn't reach the rheumatologist).
My medication of choice is prednisone, a low dose, taken sporadically. I hate taking a corticosteroid, because I know the toll it takes on the body. But I want to live productively; for years my lupus was not treated effectively and I regret all that wasted time.
Hope the appointment with your doctor went well and that you received good guidance about how to manage your symptoms.
08-19-2012, 08:10 AM
I did myself in on Friday. Spent the morning in the Dr's office and could feel the lights making me sick, despite the sunblock. Then went to a friend's and spent most of the day outside playing with the kids. All after a night of 4 hours of sleep. Needless to say, yesterday was pretty miserable.
The tramadol was just for break through pain and I wasn't taking it very much, but now that I've stopped all the weird symptoms have completely gone away. So I think I was definitely having a reaction to taking both meds together. I'm still on the ibuprofen and have vicodin for the kidney stones, so no need for the tramadol anyway.
I went to the Endo and he put me on synthroid and is running labs for Hashimoto's. I go back in 2 months for a thyroid ultrasound and to see if the synthroid is helping. Even though my TSH was normal and my T4 was just a little low, he said it was enough with my symptoms for him to call it hypothyroidism and since I have a fmaily history of Hashimoto's, he's betting that's what it is. Hopefully those lab results will be back sometime this coming week.
Only a couple more weeks until my appt with the rheumatologist! And next week I go into the vascular center and get my cystoscopy. I finally feel like I'm going to get some answers and the Dr.s are actually hearing me (it helps of course to have labs to back things up!).