I am new a new member and at current have not been diagnosed with lupus , fibro yes but I have positive Ana tests and other symptoms like excessive sweating muscle aches poor sleep no sleep migranes muscular and joint pain fatigue ect etc… I recently have had a flare laSting about two half months but am doing well with just constant am back pain and odd headaches, sweating. my Rheumatologist has prescribed various pain killers tramadol , NSAIDs , muscle relaxants flexeril , migrane tablets, to be taken when needed,as well as anti nausea and anti depressive. Yesterday night after having numerous hot flushes all day which are really embarrassing I have to add ( which i get every day and thought it was pre menopause , hysterectomy 8 years ago) I got a hot red patches on either cheek , this time my adult son even noticed it. Inhad this several weeks ago too , both times I took pictures , but have not mentioned to dr. My next appointment not until February as I just went to see her last week and was doing great. I am having blood work today to check my hormone levels.
Could this be the lupus skin rash ? It has only lasted for three to four hrs then goes. am I being paranoid??? Any help is appreciated thank you.
Not attractive picture haha !!!
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Could be the very begining of what they call the mylar (butterfly) rash very common with lupus. If it gets worse see a dermatologist.
The mylar cheek rash happens in SLE. THe discoid Lupus (DLE) happens mainly anywhere the sun has hit you regularly, even from flourescent lighting. I have had DLE for a couple of years now and wear Coolibar clothing any day I am out in the sun to prevent the rashes which do not hurt but are disfiguring until it clears up with wearing the Coolibar SPF 50+ clothing again. I'm just used to always be sure to have my top and bottom covered with Coolibar clothes. I also can wear my regular clothes with Coolibar snug tops inside them, or Coolibar tights under the regular pants. Coolibar makes lots of really nice clothing. I am a regular Coolibar.com customer! Rather expensive, but just have to pay the $. Good thing is that this expense is Deductible on Income Taxes!! It is a required medical expense! So go for it.
I had the DLE diagnosed by biopsy of a lesion on my face several years ago now. It was the first hint that I had SLE. I had the SLE blood tests and was ANA + for years before ever getting a reasonable Rheumy who would listen and believe my history of signs that qualified for SLE. The Rheumy I saw first was much put off by my "knowing what I had" and ushered me out of his office saying that I knew too much about the disease to Have it!!! Had to wait until I had changed Primary Care docs to get one who finally agreed to order the blood tests needed to refer me to a Rheumy who had just been taken on by a practice that had gotten filled in the first 8 months of practice here. Ah well, now I'm seeing a good one.
I understand your frustrations. It seems (especially in the beginning) you have a dr. appt & guess what you happen to go when you have been feeling well & feel fine at appointment then.....BAM few days later you start a flare. It took 5years for me to get formally diagnosed. I live in a rural area & our town is roughly 5000 population. Anyway my gp dr. is in a town 20min away & when I started all of this weird stuff going on with my body I was hospitalized & was to be helicopter transported to KU Med. KU med was full & could not admit me. So started the in & out hospitalizations until I could go to numerous specialists at KU med which is 3.5 hours away. I would have to stay at a motel to get all 5 specialist appointments in & of course had to schedule appts several months out to get seen by all the specialists in a few days instead of driving back & forth. Of course I was never in a flare & all of my blood tests were ok or borderline. Conveyed my frustrations with my gp & so we tried a few different medical facilities with the specialists needed. Still things were not panning out. Finally found a physician an hour & half away that specialized in auto immune disorders especially the tricky ones like lupus. I saw her & it was great. She explained false negative & false positives ANA tests among a few other tests that don't always point toward what doctors look for to help diagnose auto immune disorders. She reviewed my past records & lab/test results & charted them. She then explained how most doctors/specialists look test results & if they aren't text book perfect indicating a problem they just treat the symptoms. We got along great, She listened & then dropped the ball.......She was taking a leave of absence to do research, work with other specialists & do case studies & write a medical journal on Lupus & other autoimmune disorders/diseases. UGHHHHH just my luck. At this point I was devastated. Thankfully I have a fantastic GP who has stuck with it & though relentless work & research I was finally diagnosed. When he broke news to me he said....."you know when this started & you were hospitalized the 1st time & we were unable to transfer you? Well.....I didn't think you were going to make it. You were that sick. I had you on comfort measures & steriods." I was stunned - utterly shocked - I didn't have a clue that's how bad i was. Thank goodness for my GP doctor & his perseverance. Best advice I can give you is.....get a calender or journal or notebook & document your days. I used a notebook only & i would get lazy about writing in it or I would get tired writing about the bad days. So I got a calender & made a code to correspond with good days, bad days, so so days, etc.. & would mark the calender. Then when the flare or bad days hit I would put the date in notebook & few key notes. When I felt better the notes jogged my memory & I was able to document what was going on. I would also write down questions that I would hi light or write on a separate sheet so when I went to the doctor & i felt fine I could look in my journal & address my questions or concerns. Oh during a flare I would take my temp & document it, what meds I took to help with pain & mobility. Also wrote down how i was feeling emotionally, activities I could or couldn't do, sleep patterns, rashes, areas of most discomfort, etc. That documentation helped me so much. Especially when I was having to go to multiple doctors. What you tell one dr, you may forget to tell the next. Also - sometimes you may not discuss something with the doctor because 1. you forget or 2. you may not think it is relevent. Those are some of the things I did & wish I would have done in the beginning - it may have helped me get some answers or a diagnosis sooner.
I have had migraines all my life - honestly diagnosed at age 8 but said I had them as early as 2months old. Runs on both sides of family & I have food allergies, reaction to stress, weather patterns - multiple triggers some controllable others not so much. lol So when all of this other started - I really struggled with depression.
I too had a hysterectomy about 2yrs before all of this stuff started & ohhh the hot flashes & sweating. It got to a point where I carried a little battery operated fan in my purse for hot flashes on the go..lol I saw a friend that has a little square fan (like a mini box fan that can tilt up or down) that is battery operated that she carries in her purse. She is able to rest it on her purse in shopping cart to help keep her cool while shopping. I know certain medications, lupus & unfortunately maybe other underlying medical conditions can cause hot flashes & excessive sweating. I also get hot flashes & sweat profusely when I get upset, in a hurry, stressed or feel insecure or anxious when I have to go out in public & i am all broke out with rash. I also stress & have anxiety issues when I know we have an upcoming event or have daughters travel team softball tournaments. My husband works full time, we have cattle & farm so 99% of time I am responsible for getting her to events & have to travel, stay nights, etc for tournaments. Am I going to be able to function, feel good enough to make it thru a whole weekend, or get a migraine & be really sick. I tend to make it through & can go go go but then WHAM....I am out of commission for days to weeks. Not trying to scare you - just letting you know to have a back up plan in case you aren't up to doing what ya need to do.
To answer your initial question regarding rash....my guess yes it is lupus rash. I get them but mine don't last too long 20min, to hours to a few days- just depends. Then that triggers my foliculitis & I get pimple type sores that take forever to go away. I don't think you are being paranoid. Any auto immune disorder is full of "suprise" lol symptoms. Just do what you are doing by taking pics & try documenting your symptoms, etc.
Sorry so lengthy - just letting you know you are not alone & you have come to the right place for questions, answers & support. Take care of yourself.
It doesn't look like the butterfly pattern rash. I don't think lupus rash comes for just a few hours or when you're having a hot flash. My hot flashes ended up being due to thyroid, adrenal and endocrine issues. My rash, which is all over my face like yours, was diagnosed as rosacea caused by my too fast heart rate, tachycardia. Rosacea is slightly raised and can have bumps or blisters on it. Yours looks pretty smooth. I would check again about your hormones, maybe go to an OBGYN who deals with bio-identical hormone creams. Then ask him/her to check your thyroid and endocrine system. Or just go to an endocrinologist, they are trained for every hormone and chemical in your body.
I flush as well. Noticeably.
Wow, i did not know the excessive sweating is lupus related, thanks. Do you know if the sweating is a flare?
Thank you for your help I sent pictures to my dr and am awaiting her answer , there is so much going on that it’s hard to differentiate right now. Sending good thoughts to everyone TY.
I think the sweating may be from the anti depressants. I’m on Cymbalta and I sweat so so bad. All the time.
Hi, I get the flushes everyday too. My rh dr said it is called a malar flush and is common with lupus. I have a friend with lupus who also gets this. Sometimes it feels like my face is on fire.