Tossing this out there b/c I've become really frustrated with both my rheumy and my dermatologist. They are both really great but beyond saying "yeah, that's the rash" they are soooo not helpful. No matter how much sunscreen I put on (I do all over body and at least three layers on my face + hat) it never goes away completely. And, the sun only seems to make it kind of worse ... meaning I think there are other things that effect it. But when I ask the docs, they basically shrug and move on.
Does anyone else find that these things make their rash appear or get worse: emotional stress, vigorous excercise or allergies?
I know allergies are bad on the immune system, so that makes sense to me. But I'm really dying to know if anyone else out there has a rash that doesn't like excercise and stress.
I cancelled my last workout sessions b/c I was so embarassed when I looked in the mirror. I think my trainer thought I was about to have a heart attack :0 This is such a bummer as it's taken me almost a year and a half to get up the energy to workout again. And it's only twice a week.
Any and all advice appreciated. Attached is a pic of the rash about 4 hours post-workout. Had to crop my face for obvi reasons, but in this instance the rash actually went upward across to top of my eyes as well, in a perfectly symmetrical pattern. Kind of like a butterfly's upper wings.
It finally went down after a dose of Medrol and ~2 days. Before the workout, it had been barely noticeable.
Total aside: anyone else get that little white stripe across the middle of their nose? Appear about 6 months ago and don't know what's up.
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I don't have a definite diagnosis of lupus, (symptoms but negative bloods), but do get the rash on my face. Apart from the Sun I find stress is a trigger. I also find using my iPad or laptop for too long can trigger it. As can being in artificial light for too long.
I don't do extreme exercise or work-outs. I get face rashes and rashes everywhere. Extreme work-outs just exhaust the body already struggling with immune system problems. I have allergies, many, and must avoid stress - not easy in today's world especially when you are sensitive to the suffering of others. I do moderate exercise of walking, table tennis, gardening etc. That suits me, but I mustn't over do it. You could be the same, I don't know. I can take no drugs and I am electro-sensitive, too. I am better outside and away from Electro-magnetic radiation of Wi-Fi, etc. I keep moving because our bodies discharge when we are moving, but like I said not extreme work-outs. I am always in a flare if I over-do the exercise.
I find stress brings the rash up but, having said that, it also seems to make my mouth ulcerate and my pleurisy worse. I honestly believe that stress is the biggest single cause of problems for those of us with SLE. I strongly believe that SLE is completely incompatible with modern life.
I also find that if I sit behind my computer screen for too long, (more than an hour) the rash magically appears.
hi tonk - you're so right! modern life and SLE are impossible to reconcile. and the stress association is the worst. it's gotten so bad now that i'll feel pain even when i hear or am around stressed out people. especially if they are angry. it's like my body can't tune out or cope anymore. i talked to my doc about it b/c i thought i was nuts. was surprised to hear that many people with chronic pain from diseases experience this. but how do you get through life, right? can't live in a bubble :/
Sometimes, it is true to say that life can seem pointless however, I find that I can cope with it by only worrying about things which I actually have control over.
I am retired which, to some extent, gives me more options and choices over what I do and when. I don't feel the pressure of having to get up at a particular time, nor do I feel obliged to earn money to provide for my family because it is now just myself and my wife. This alone takes much of the perceived pressure off of my shoulders.
Don't get me wrong, my wife and I do sometimes argue or bicker, and that can cause my condition to flare but again, I try not to worry about it. We have been together long enough to know when to drop it so to speak.
SLE is not my only medical condition, I also have an especially nasty form of Meniere's disease which predates my SLE. Amongst other things, this makes me extremely sensitive to noise at certain frequencies especially that at which kids scream. I have learned to avoid situations where there will be screaming kids such as supermarkets at weekends etc. My own grandchildren know how affected I am by loud noises so they play quieter than one would expect them to do. I think that because, I had experience of coping with a chronic illness pre SLE, that helped me to accept the limitations SLE put on me once it exploded on the scene, even though I suspect, I actually had it for many years prior to my formal diagnosis.
Try to work out which situations cause you problems and then try to work out a strategy to limit the amount of time you find yourself in those situations.
I think over time, you learn to live with SLE and accept your limitations however, SLE will always shock and surprise at some point. I don't class it as giving in to the illness, I class it as being realistic.
Pace yourself, if you don't feel up to doing something one day, save it for another day....Pick your battles rather than fight each one at the same time.
Listen to your body and record thoughts and feelings daily.....It may throw up a pattern which will assist you or your medical team to help manage the condition. It can also help you to ascertain whether you're improving or getting worse or if the condition has moved the goalposts again.
I use an A4 size desk diary with a page for each day. I then review the period since my last hospital appointment and my next appointment so that I can, in effect, present a detailed summary of just what has been happening during that time. You may notice that the face rash has got more pronounced or chest pains have become more of an issue. I find doing it this way, I don't forget to mention relevant facts to my specialist when I get in to see them. You could choose to do it on your computer but, again, I find the monitor irritates my face rash hence why I prefer the old fashioned paper diary.
I suppose I find it easier to keep such notes because I am a retired psychiatric nurse and spent my professional life writing such notes for my patients but, it really is a worthwhile habit to get into and may well help you and your medical team in the long run.
You are right, you can't live in a bubble but, sometimes you may need to take temporary refuge in that bubble....Perhaps there's a support group in your area with whom you can meet up or exchange emails with. Sometimes, it really is good to talk to someone about how you feel, especially in relation to your hopes and fears which SLE causes. It is even better if that person knows what you're going through because they have the condition too however, it can sometimes be stressful if you're the one someone is offloading on to, especially if you're a sensitive and caring person who feels empathy for the suffering of others, so just be aware that it could cause more stress which none of us need.
Take care and try to only worry about things you actually have control over....Good luck!
I have not been diagnosed with lupus but I have the same rash. The sun makes it 100 times worse I have started to use olay with spf this seems to help a little but like you find it embarrassing
Hi, Iam the same. Excercise makes me look like a tomato 🍅 for days, but only the front of my face. Really embarrassing as people think you are going to drop from exhaustion but you have just started. You are not alone. Stress, tiredness and the sun also have similar effect. I also have rosacea which adds to the face issue. Have been given some good antibiotic and steroid creams from the doctor that help. But I am trying to learn to embrace the look as the exercise is too important. I am not there yet. Lol x
Hello, the butterfly rash is I believe a classic sign of lupus. I , too have this now, been told last week I have severe diverticulitis, oestoporossis, fibromyalgia to date after years of being fobbed off. All of a sudden attitude of GPS better!!!!! Still having more tests. Take care.ii had to go private and have both NHs and private tests. The rhuemologist kicked started diagnosis. Awful trying to explain symptoms isn't it? GPS think you a nuts. Very kind regards.
Stress, sadness, anger, exercise, working long hours, indoor lights, too many hours using my laptop, driving under the sun... pfff.
I use every ointment or nappy rash cream I can tolerate and some vitamin E gel pills (those you are suppossed to eat). I hope you can find a way to deal with yours hug.
You are not alone. I wish someone would tell me this once in a while. Have you tried swimming? I just started water Zumba and it pretty great. I still struggle a little bit on my joints but it is better than being in a hot sweaty gym.
My cheeks and nose look just like yours. Nothing works on making it go away and a lot of things make it worse. The only thing that I have found to make it "better" is makeup. It covers it up! I do not feel so embarrassed by how awful it looks some days.
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hug.
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