I am at present having an active outbreak, this is my first outbreak in 2 years. My skin is not as bad as it usually gets, but my body seems to have taken a knock. I have Discoid Lupus therefore has only affected my skin in the past. Now I have aches and pains in my back and shoulder, itchy skin (scalp and face) and very very sore eyes. I am feeling very lethargic and have no energy whatsoever. I will be attending the Drs. on Monday and just wondered if this was normal?
Hello sunlight, I have SLE. Not sure what normal symptoms feeli like. I have read that those with Discord Lupus can also have SLE. I would make sure to describe exactly what you are feeling on Monday. Maybe they need to run more test. I pray that you get answer to what’s going on.
I having the worst flare right now. Your symptoms sound a lot like mine. My rash extends onto my scalp. My back, neck and shoulders hurt. I have always been told its fibromyalgia. Good luck at your doctors!
Your symptoms seem very normal for SLE. I feel that way most of the time.
I am going thru the same thing and I have SLE. Artchick is right about it being normal but I am much worse due to sun exposure for too long. I was in a situation that I couldn't remove myself from and now I am in trouble. I am waiting for a doctor office to return my call. I am sure I have something going on with my kidneys so hoping my primary care doctor will order labs. Make sure your doctor understands how bad you feel. For me that always seems to be a problem. Good luck on Monday!
Sounds like you’ve been diagnosed in the past with Discoid lupus, but not SLE? If this is so, it sounds like you may have progressed to SLE (systemic lupus) now. Tell your doc the symptoms you’ve mentioned here, so he can do some bloodwork on you to find out if it’s SLE. If it is SLE, then yep that’s pretty much how the sunlight makes me feel, too. Fibromyalgia and lupus have lots of the same symptoms. I do also have fibromyalgia, but the sunlight isn’t a factor with fibro.
I always explain to people that I feel like I was hit by a bus. When I am having a bad flare it seems every inch of my body feels awful. I can even say my eye sockets hurt so I make it very quiet and dark to relax.
Sounds like we all have this pain in common. Thank goodness I have found a group who honestly understands.
these were exactly my symptoms after a few hours in the sun last weekend it is not normal but may be normal for us.
Tammy
Hi, i know how you feel, and no , it is not any fun. My flares cause me to itch very bad also, the doctor gave me some shampoo, it helped the itching . Hope that things get better for you...Beverly L.
Funny...I always say I have been run over by a train--changing reels, going back and forth over my body!
auntpearl said:
I always explain to people that I feel like I was hit by a bus. When I am having a bad flare it seems every inch of my body feels awful. I can even say my eye sockets hurt so I make it very quiet and dark to relax.
Sounds like we all have this pain in common. Thank goodness I have found a group who honestly understands.
hello sunlight, i have sle and also many other things attached to that as well i wanted to add that we often get other autoimun problems which your aches and itching and sorness can also be linked too please have your tsh,t3,t4 checked for any thyroid problems that was a big one that came with the sle make sure not to let your doc just dismiss alot be specific and write down the problems you are having make sure you bring it to the docs as we do forget once we get into the room it is so important that we teach our doctors to listen to us i had to and my drs know when i need their attention please make sure they do a battery of blood test god bless, hope everything turns out for you and hope you will let us know how you made out
Discoid patients can later develop SLE. I’ll hope not for you, but it’s something to be mindful of.
Hi, yes a train and bus run over me during my flares. Please don't let it rain-that something that has nothing I can compare to, it hurts so bad when it rain , I just stay in the bed on the heating pad. Take care of yourself...Beverly L. Latina said:
Funny...I always say I have been run over by a train--changing reels, going back and forth over my body!
auntpearl said:I always explain to people that I feel like I was hit by a bus. When I am having a bad flare it seems every inch of my body feels awful. I can even say my eye sockets hurt so I make it very quiet and dark to relax.
Sounds like we all have this pain in common. Thank goodness I have found a group who honestly understands.
Make sure the heating pad has an auto shut off feature in case you fall asleep.
Ann, you have a lot of info. Do you or anyone here use the UV clothing? I am thinking I read on here that someone does wear it. I have looked it up on line and it is really pricey. I was able to get a mans long sleeve white shirt on sale of 20.00 today vs the 65.00 price tag on a womans long sleeve white shirt. I know it is going to get dirty so maybe I will eventually go back and get the more expensive one for going out.
My family has learned that if they see anything on sale...or it's my birthday/Mother's Day/Christmas, they surprise me with the clothing.
What a good idea, Latina. And Ann, you have kept me busy reading so many wonderful articles.
Thank you everyone!
Had my appointment at Drs today- he is re-referring me back to Dermatology and has ordered blood tests to be taken to measure my anti-bodies and Thyroid levels. Still feel like Ive been ran over and to top it all I now have a chest infection for which I am taking antibiotics. xx
I have been in a flare for the last month. Went to the Rheumy and he put me on prednisone 10 mg. along with my plaquenil. I also take 1 flexeril 10 mg. at bedtime and 2 tylenol. These are just the ones I take on a regular basis. I couldn't figure out what caused me to flare as I don't go outside except to go to work and come home. I haven't slept in a bed in close to 2 mths, I sleep in a recliner because it seems to allow me to sleep a little better. Mind you I don't sleep through the night, maybe a total of 4 hrs. sleep a night. Well this morning I woke up and happened to look towards the window and realized that my recliner is right in the path of the sunrise. So I'm thinking that even though I don't go outside, I am stll getting the UV rays from the sun that comes through the window every morning and shining on me!! Needless to say I am moving the chair this evening away from the window and see if it helps. I dont have curtains or blinds on the window, just a valance because it is on the second floor facing the woods.
hi mrspag,i am not feeling to well but i did want to tell you that its really good that you atleast got the testing over with hopefully you will get the results in a couple of days depending on when you get the blood work done and that will atleast put your mind at ease hopefully giving you the answers you need i have sle lupus and other autoum, diseases and now i am waiting also to see the dermatolagist for some of us it lupus can get very complicated like ann A. said reading is knowledge and if you can and in between being sick try to educate urself as much as u can because alot of this is a mystery and to get the best care we can its important to know and not just belive the doctors know it all the lupus foundation is awsome if you need to go to their website they have so much help there they also have educational conferences and monthly telephonic support groups from your home if interested just go to lupus.org believe me every bit helps because no one really knows enough about it let alone trying to explain it,but we have people out there trying really hard with this support group life with lupus and i call it the mother of all the lupus foundation can help answer alot of medical questions its like a big lupus libary and alot of kool people doing alot of great stuff i hope that helps hope to hear from you soon
mrspag said:
Had my appointment at Drs today- he is re-referring me back to Dermatology and has ordered blood tests to be taken to measure my anti-bodies and Thyroid levels. Still feel like Ive been ran over and to top it all I now have a chest infection for which I am taking antibiotics. xx