View Full Version : Lupus really panicking
After a fair bit of Googling I've come to the conclusion that's what I have. It has flared up this week and ticks a lot of the flare up boxes: Extreme temperatures (it's freezing in Newcastle literally), exercise, spicy food and alcohol. Well, I've been exposed to all of them this week and now I have a pink nose and a bit of pink cheeks. It was better this morning but since walking the dog and coming back into the warm I look like Noddy or a victorian doll. I know it's not a life threatening disease or anything but it's still worrying me :(
Does anyone else have this? I'm scared it gets worse and worse over the years and I end up with a horrible nose or bad skin. And I'm worried it means there's something wrong with my blood vessels. My main fear was High blood pressure but they're unrelated. Infact I read flushing is very rarely a sign of BP problems and if there is any flushing it would the whole face and chest. I don't have that. Roseacea is just classed as a skin condition.
Does anyone have advice to keep it down / at bay? I'm having a meal tonight and wanted a red wine, but I know it's gonna turn me even pinker!
Help x
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Anyone? X
Serious question: Does it have to actually be some documented condition? Why can't it be just part of your human condition? I myself get rosy cheeks and nose when out in the cold as I'm fair skinned. I know of many people that this happens to. Besides, you would actually have to be diagnosed by a real life doctor to claim this anyway. And if it is? Big deal... it's not serious. Seems to me you're just feeding the dragon to justify your irrationality LF.
Positive thoughts
I know it may just be how my body works. But it's not just flushed wheh I'm out in the cold. I've been indoors a couple of hours now and it's got gradually more flushed. My cheeks are pink and hot to the touch and so is the top if my nose. It feels like a burning sensation. I've put a cold flannel on my face a few times but that's not doing anything. My boyfriend is getting pissed off as it's all I'm talking about and constantly checking my face.
I just don't know why this has happened. I can't remember if it's a normal bodily thing for me in the winter. If it is I don't remember it being this bad :(
Trying not to freak out but I can't help it. I am now thinking it's part of an underlying condition, maybe related to my liver or to the cherry spots I have on my torso and chest. The liver thing is something that's been on my mind lately as I feel there's discomfort in that area.
I'm getting into a panic over it all especially as I can't get my skin to calm down
My boyfriend is getting pissed off as it's all I'm talking about and constantly checking my face.
Can't blame him. You're totally spiraling and making a mountain out of a molehill. I have the feeling you'll end up going to the doctor and being told it's normal for you. Care to bet an "I told ya so" on this? ;)
Positive thoughts
I know, I've been a bit silly about it to be honest. It's going down since the house is cooling down so maybe I'm just too warm with the heating always being on.
I'm at the doctors on Thursday anyway so I'll ask her about it then.
Thanks Fishman x
I know, I've been a bit silly about it to be honest. It's going down since the house is cooling down so maybe I'm just too warm with the heating always being on.
I'm at the doctors on Thursday anyway so I'll ask her about it then.
Thanks Fishman x
No problem... you know I'm always going to challenge you to fight the dragon ;)
Positive thoughts
I know, I appreciate it hugely!
Thanks again x
PanickyGuy
30-01-17, 02:30
Does anyone else have this?
Yeah I was diagnosed with that years ago, when I was in my early thirties. I even have blood vessels that appear on a few areas of my face now. Although you can't see them unless you get up close enough like a foot a way from a mirror.
But I'll tell ya the things that I noticed over the years that can make it flare up and that's alcohol, smoking, spicy foods, hot tea, weather changes, exercise and wind can all irritate it.
If it gets real bad and bothers you, you can go the docs and they have different types of medication to keep it from getting out of hand. But unfortunately there is no cure for it. Managing it is the only thing you can do i'm afraid.
I'm going to the doctors about it on Thursday to see if it definitely is this or not. So exercise alcohol and spicy food, all the good things in life! I definitely couldn't contemplate stopping training or going out at the weekends and having a drink, life just wouldn't be worth living. So I'll just have to hope it doesn't flare as badly in future. I think it's the weather that's set it off as the other things I do all the time and it's never an issue.
What did you find helps?
Thanks
Sugar makes mine flare up
And sugar, no chocolate either! This roseacea is a b*stard haha.
How bad does your guys get? Mine only seems to flare badly in the early evening, say between 7-9 then goes away again. I'm not sure why. I've looked at some pictures online and it's not as bad as that. I just have pink at the bridge of my nose and the tops of my cheeks, nowhere else. My bf keeps laughing saying I'm just warm and it's not roseacea, but I think it's a boy who cried Wolf situation now, he doesn't believe there's ever anything 'wrong' with me.
I've also wondered if it's to do with the congestion I've had lately. I had a cold for a while, that's gone, but I keep getting random totally blocked nose. I have wondered whether it's an allergy also. I'm house sitting this week, 3 cats and a dog, and it's been since then. Last time I house sat for them I had swollen eyes. So, don't know if there's a link here.
Am I going to end up with a horrible spotty veiny face :(
Ok. I've decided this skin flushing is lupus and not roseacea. I was trying to find info to help bring the flushing down and ended up coming across lupus symptoms. The typical lupus rash on the face involves the bridge of the nose and the cheekbones, which is exactly what mine is when it's flared. It specifically affects the bridge of the nose which is where mine is worst. Other symptoms are said to include hair loss, which I had a few weeks ago, and again a few years ago in the same spot. The doctors just said it was stress or an immune response. Well lupus is an immune disease. I have had blood tests taken in the past few years (after the hair loss) and everything was normal. But i don't know whether it would need a specific test. I'm now freaking out. I don't have the other main symptoms which are apparently joint pain or swelling, or rashes on the hands or wrists. But i do get white fingers in the cold sometimes (Raynaurds) which is another symptom. Although my mum gets that too so it's never really bothered me.
Can anyone advise? I'm very worried
merged with your earlier thread
Thank you
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Anyone?
Thank you
---------- Post added at 13:35 ---------- Previous post was at 11:03 ----------
Anyone?
What do you want people to say that hasn't already been said? You said you're going to the doctors on Thursday, so why not just wait and see what the doctor says? You aren't exactly going to drop dead between now and Thursday so why not just try to put it out of your head for a few days?
Catherine S
30-01-17, 16:25
If you've been told previously that you have Raynauds then yes, it could be connected. My daughter was diagnosed with this a few years ago and her fingers go white as well as the tip of her nose. She also has a high colour across her cheeks and the rest of her nose, which becomes more red in the winter and after drinking alcohol. I doubt you have lupus tbh.
ISB
alcohol, smoking, spicy foods, hot tea, weather changes, exercise and wind
Sounds like a typical weekend here.
ISB - do you mean your daughter was diagnosed with Raynaurds or lupus? I've never been told from a doctor I have Raynaurds, I just know a few people with it and they're like oh you have it too. So I just thought nothing of it until connected the lupus reading.
Gary A Yeah I'll be asking what she thinks at the doctors it's just waiting for the appointment is hard.
Catherine S
30-01-17, 19:19
Sorry for the confusion, she was diagnosed with Raynauds :)
ISB
PanickyGuy
30-01-17, 21:15
Sounds like a typical weekend here.
Well come to think of it...that use to be my typical weekends as well. When I was a helluva lot younger, wild and stupid, although in this case, I didn't want to specifically mention 'a lot of sex' as another reason, because I was sort of categorizing that under 'exercise'. :whistles:
@LF87- You still want me to answer your question about how I take care of my Roseacea? Because I see you've turned this into a Lupus thing now, which I really don't see the point now.
Yes Panicky Guy do tell me, I'm hoping that's all it is so it'll be good to know either way. Do you find it flares up at night more? I don't know if that's just because of the warmth in the house.
I'm demented over my lupus theory though, I now can't see what else it could be. My doctor did however tell me that when my thyroid was retested (after a high reading), they retested it for antibodies as well. Like autoimmune antibodies. And I think that's the test they do for stuff like lupus. Both came back normal and that was about 3 years ago. I'm freaked out because of the hair loss I've experienced as well as this facial flushing. Twice in the same place, but years apart. Neither doctors seemed concerned, but that was before I mentioned this face flushing thing. This might change their mind. But they both used the term autoimmune, which I was always like ok but why? They also said it could be stress. But i dunno, seems weird it's the same spot. Luckily it's underneath my hair so you can't see the little patch.
I don't have any symptoms such as fatigue or joint pains, which are at the top of the most common symptoms for it. My brother had a phase of alopecia in his beard wheh my mum was in hospital so maybe we're prone to that somehow genetically? Stress and bouts of alopecia? Sorry I'm ranting but bf has put a ban on lupus chat. He also bet me 20 pounds the doctor says it's not lupus.
But i dunno, there's a lot of box ticking here :(
PanickyGuy
31-01-17, 03:10
Yes Panicky Guy do tell me, I'm hoping that's all it is so it'll be good to know either way. Do you find it flares up at night more? I don't know if that's just because of the warmth in the house.
I'm demented over my lupus theory though, I now can't see what else it could be. My doctor did however tell me that when my thyroid was retested (after a high reading), they retested it for antibodies as well. Like autoimmune antibodies. And I think that's the test they do for stuff like lupus. Both came back normal and that was about 3 years ago. I'm freaked out because of the hair loss I've experienced as well as this facial flushing. Twice in the same place, but years apart. Neither doctors seemed concerned, but that was before I mentioned this face flushing thing. This might change their mind. But they both used the term autoimmune, which I was always like ok but why? They also said it could be stress. But i dunno, seems weird it's the same spot. Luckily it's underneath my hair so you can't see the little patch.
I don't have any symptoms such as fatigue or joint pains, which are at the top of the most common symptoms for it. My brother had a phase of alopecia in his beard wheh my mum was in hospital so maybe we're prone to that somehow genetically? Stress and bouts of alopecia? Sorry I'm ranting but bf has put a ban on lupus chat. He also bet me 20 pounds the doctor says it's not lupus.
But i dunno, there's a lot of box ticking here :(
Well wait a minute. You just mentioned your hair falling out and it's a spot under your hair? I do get that as well, but in my case it's under my beard in some areas and on my chest, yet the thing is - I've also been diagnosed with psoriases as well and that will usually cause it to itch and you get flaky skin sometimes; especially in the places where there is thick or light hair growing and it usually is found in various places over the entire body.
So I'm wondering now if it itches sometimes and you get any flaky skin bits with it? Maybe you're like me and have both. :shrug:
Well anyway, I tell you what I use to take care of both my problems and that's using store bought hydrocortisone creme. I mainly use for anti-itch and flaky/dry skin because of the psoriases that I also have, but I also noticed it will tone down the redness I get from rosacea as well, so that it's not so noticeable out in public. But it won't get rid of the small facial veins that can pop-up in a few places with rosacea. But in my case I'm not bothered by those since it's not like the facial veins I have, show up everywhere on my face; they mostly show up where my beard grows so lucky for me I guess.
But that's what I use and it works good enough for me, but since you're going to see a doc for the proper diagnosis about it they probably have something even better then what I use. I say definitely try their recommendations first. :winks:
I have really thick hair. About two and a half years ago it started to shed profusely. It wasn't seasonal shedding because it was happening all the time. In addition to the hair loss one a couple of my fingernails started growing in a weird way. They were sort of misshapen. I don't know how to describe it. I was tested for Lupus and the results were negative. I tried to find answers for about a year and no one could give me a reason for it. My hair continued to fall out excessively until about 6 months ago. I still had a lot of hair so no one could tell except my hairdresser and myself. 6 months ago I stopped taking Nexium after taking it for 4 years. My acid reflux was mainly caused by my anxiety so once I overcame the anxiety I didn't need the Nexium anymore. About 3 months ago I noticed that my misshapen nails had returned to normal and my hair loss had stopped completely. I blame the Nexium. The doctor said that's impossible. I said bull and will never take it again.
Thank you panicky guy that's really helpful. I will go get some. I'll definitely ask about psoriasis as well. I have very tiny visible veins on my nose but my make up covers it well. Hoping more won't pop out. I did read that was a feature of roseacea and not the lupus rash?
I'm not on any medication other than my pill? So I don't know if thats what it could be. What is seasonal hair loss? My hair loss isn't excessive, it's only happened badly twice. But those two times were bad, a full clump. My hairdresser told me to stop using dry shampoo as people had been losing hair so I don't know if that may have affected an area of the scalp? But they're pretty adamant about it, that they've seen lots of people with bald spots because of it. But I'm still using it :/ I doubt it could be that as the clump only comes out of one area. Do know if lupus hair loss would cause it all over the scalp not just one spot? Thanks for replying,x
Capercrohnj
31-01-17, 13:34
I have really thick hair. About two and a half years ago it started to shed profusely. It wasn't seasonal shedding because it was happening all the time. In addition to the hair loss one a couple of my fingernails started growing in a weird way. They were sort of misshapen. I don't know how to describe it. I was tested for Lupus and the results were negative. I tried to find answers for about a year and no one could give me a reason for it. My hair continued to fall out excessively until about 6 months ago. I still had a lot of hair so no one could tell except my hairdresser and myself. 6 months ago I stopped taking Nexium after taking it for 4 years. My acid reflux was mainly caused by my anxiety so once I overcame the anxiety I didn't need the Nexium anymore. About 3 months ago I noticed that my misshapen nails had returned to normal and my hair loss had stopped completely. I blame the Nexium. The doctor said that's impossible. I said bull and will never take it again.
That sounds like anemia hair loss and misshaped finger nails! How was your iron? PPIs are known to lower your iron levels too.
I had all the blood tests. Nothing showed. I know anxiety can cause hair loss but it can't affect fingernails. It's funny because my skin got very dry and I had patches of dry skin here and there. All of that stopped after I ceased taking the Nexium. I don't have a medical explanation for my body's reaction to Nexium. The only way I could test my theory is to start taking Nexium again.
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LF87 our hair sheds more at certain times of the year. I think around late autumn/winter. When my anxiety was at its worst I would have periods when my face would get very red and hot. If I was focusing on a certain symptom and worrying that I might have a particular disease associated with that symptom my face would become burning hot. I would have to lie down and calm myself for it to go away. I don't think you have Lupus. I think you have anxiety. You have been coming here since 2013 and I assume there have had various concerns about your health. If they all turned out to be nothing what are the chances that this is something other than anxiety. What's the pattern? It seems like all the dots connect. I know how many people with HA think because I used to think that way too. You are convinced that you have something wrong with you and you are waiting for all to be revealed. I went through all the usual HA stuff. An ever changing list of diseases. I was absolutely convinced I had breast cancer at one stage, based on nothing except "I just know I have it". When I had a mammogram and ultrasound and nothing showed I walked away stunned that no cancer was found. I was convinced I had pancreatic cancer too. I spent half the day looking at my skin and trying to work out if it looked yellow. But "I just knew" I had it. More negative test results. Do you know what I used to think each time I was convinced I had some serious disease and got tested to see if I had it? I would think "this is the explanation for all those symptoms I have been having for years". That's where you are now. You believe there is something seriously wrong with you. You don't know what it is but you do "know" there is something. You remind me of how I used to be. I just hope it doesn't take you as long as it took me to accept that there is nothing wrong. It took me 3 years this time. 3 years that I'll never get back.
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