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Could I have Lupus? Please help

Posted , 4 users are following.

KaryAM
KaryAM

Hey... so... grab some popcorn. This is going to be a long story.

In October 2015 I started to get severely dry skin that would itch to no end and patches started turning white or red and scaly. It happened on my arms mostly and a little on my legs. It went away on its own a few months later. Then once in late 2016 I got it again except this time it started happening on my face, on the cheeks right next to my nose and on my eyelids. This only lasted about a week and went away. Yet in 2017, around November, it started again... on my arms close to my armpits and on my face. Except this time it was a lot worse. My eyelids started looking like they were thickening and it got to the point where I definitely needed to see a doctor.

At first I thought I had psoriasis (my grandpa has that) but my dermatologist said I had atopic dermatitis. She gave me some creams for to put on the afflicted areas and that was that. After I started using the face cream however I SOMETIMES (not always) got a rash on my cheek area. Very much like a butterfly rash. I thought it might be an allergy to the cream but it didn't happen every time I used it, just once in a while. The cream is: Prodermic 0.1% Tracolimus.

My face did get better but when I told my dermatologist about the rash she didn't pay much attention to it and said that for the most part, at least I'd been able to use it and changed me over to another cream.

The face cream she gave me doesn't give me rashes on any part of my body either. By the way.

Anyway on January 27th I was away at the beach for the weekend with friends. We'd hung out in the sun for most of the day (I was wearing the sunscreen my dermatologist had given me) and later that day around 8pm my face started burning to the point that I was holding my cup of water and ice up to my cheeks. A friend of mine looked at me and told me I was red and I went to the bathroom to look at myself and sure enough I had a butterfly rash. I splashed cool water on my face and tried to ignore it and around 20 minutes later, it was gone. (I hadn't used anything else on my face other than the sunscreen that day).

That same weekend my arms started feeling sore like I'd just done exercise or something when I hadn't. And now I constantly feel like my muscles are tight. Like I have this need to stretch constantly. I don't really know how to explain it. Kind of a dull ache, I guess.

And then for the past week or so, I have super dry eyes when I wake up. To the point that I can hardly stand to open them because it hurts and I want to put water in them. And if I think about it, this dry eye thing has been a constant on and off thing for years.

I've been trying to think back to other strange things over the years and I remembered that back in 2015 or 16 I got this weird "burn" on my back. it wasn't a sunburn or anything. I hadn't been in the sun. I also didn't have a mark but every time something would touch my back I'd feel like a stinging/burning sensation and I'd have to sit up off the backs of chairs and stuff to avoid it.

Another thing is that I've been getting mouth ulcers quite badly and frequently since about September and before that I hadn't gotten them in years. 

Also, my eyes itch all the time and as soon as I touch them (if I can't help scratching) they turn red INSTANTLY. They'll puff up and turn red and won't go back to normal all day.

Thinking back on other things today, I realized that my fingers sometimes feel weird since I was a kid. I don't know if I would call it numb.. more like I felt they were swollen... or like they had doubled in size or were fat or something... but they always looked fine. It was just the feeling of it. Maybe that IS numbness? I don't know.

And last I guess.. I sometimes have these days when I feel completely and utterly tired.. even from the moment I wake up and I'll just sleep all day without being able to help it. These don't happen often and I think in my whole life I've only had about 5 of these days. But a couple of them have been recent and coincide with my other "symptoms"(?) so I thought it may be worth mentioning.

I don't know. Maybe these are all completely unrelated issues but ALOT of people have told me "oh hey, this sounds like lupus". So now I want to know your opinions.. from people that have some knowledge on this.. does this sound like it could be lupus and should I ask to get tested for it?

I'll also mention I'm asthmatic. I don't know it that matters. And if I think of anything else I'll also add that it. 

0 likes, 3 replies

3 Replies

  • StephanieBrooke
    StephanieBrooke KaryAM

    Posted

    Lupus (SLE) is a very difficult illnes to diagnose and can mimic many other illnesses. We do have intolerance to sun which can cause a (flare). The best thing you can do is go and see your doctor, explain your symptoms and ask for blood tests. The most important blood tests are ANA, anti dsDNA, ESR, CRP, Vitamin D etc. Most health professionals now are reluctant to diagnose lupus without both symptoms and positive blood results. I was diagnosed in 2003 and you do have some of the symptoms (sun intolerance, fatigue, mouth ulcers). I suffer badly with mouth ulcers which are like craters, and nothing like the usual smaller ulcers people suffer with. Most lupus suffers get these and also get them in the nose too. Lupus is a life changing illness and not something you want to have. Go to your doctor and ask for the blood tests I mentioned. I sincerely hope you don't have it. Look after yourself and good luck!

  • margaret22116
    margaret22116 KaryAM

    Posted

    Hi. Could be Lupus yes but also with the dry eyes and mouth I am thinking og Sjogren's syndrome. You could do with follow up. Your fingers feeling numb and like sausages....have you discussed that with your doctor? Sounds like you are describing peripheral neuropathy. I have Behcet's disease similar to Lupus and Sjogren's. I get the butterfly rash with that. And neuropathy.

  • henri1953
    henri1953 KaryAM

    Posted

    For your dry eyes you can use Saline. Obtainable from every pharmacy. That is the closest to natural tears and you van use as often as you want, it wont hurt you or burn, nothing. I use it for my eyes because I had two corneal transplants.

    You people suffering from this horrible illness you truly got my sympathy, from what I've read here, really you are in my prayers.

    But for your eyes, try the Saline and please let us know whether it helped for you.

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