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Author Topic: think i've found my problem :( lupus  (Read 997 times)

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Offline mrdave92

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think i've found my problem :( lupus
« on: February 18, 2014, 07:42:37 PM »
i finally think i may have found what's wrong with me and what's causing the horrible joint pains, bodyaches and headaches. i mentioned in previous posts that i've been suffering from a facial rash but i never made the connection and today i've realised that my rash has all the hallmarks of a lupus rash and my symptoms match up as well :( i'm very frightened and scared as to what the future holds if this is Lupus but it seems all too obvious now i've finally made the connection.

When i was at hospital they took blood and urine tests as well as a chest x ray which were all clear but after talking to one doctor about my joint pain and rash he started asking questions such as does my rash worsen in the sun? and have i had any blisters or ulcers in my mouth? i now realise he was making a connection to Lupus. he took some blood and said they were going to test for rarer problems which may be occurring but i'm yet to hear anything back 9 days later. They said my results would be with my GP who i'm scheduled to see on Thursday

i've been really achy today and after reading up on Lupus i'm petrified :(

i've included some links to photos of my rash on different days it's flared up, apologies they aren't very pleasant to look at and i'm looking worse for wear.

http://s21.postimg.org/c6nkoaw2v/image.jpg

http://s21.postimg.org/nt7opfjdz/image.jpg

http://s21.postimg.org/d7ntdfd2f/image.jpg
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Offline aec711

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Re: think i've found my problem :( lupus
« Reply #1 on: February 18, 2014, 08:24:40 PM »
HI -

I just wanted to comment on your rash real quick -- my sister as lupus and the rash is usually only on the cheeks and over the bridge of your nose.  I see some on your forehead in the first photo and hers is never on her forehead :)  Maybe that made you feel better.  It is also winter and you could just have dry skin or it kind of looks like Rosacea to me - which is not a big deal really.  Also, I have lots of headaches and I am achy too - I always hurt - I just say it is because I am getting older (almost 33 lol).  Plus, I think not hearing anything from them in over 9 days is a great thing!  Keep us posted :)
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Offline Sunlover

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Re: think i've found my problem :( lupus
« Reply #2 on: February 18, 2014, 08:56:17 PM »
I read your post before the other poster posted and decided to come back and tell you what I though - and they confirmed what I was going to say!  Rosacea!  I see little acne bumps and that is another telltale sign of rosacea.   Did the doctor MENTION Lupus to you?  Or did your mind just run away with you when he was asking things ABOUT Lupus (like the question about it being worse in the sun)?   Doctors do that, it's to rule things out.
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Offline NightBlizzard

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Re: think i've found my problem :( lupus
« Reply #3 on: February 18, 2014, 09:13:33 PM »
First - calm down. You're going to be okay; even if it is Lupus.

My mother and I have Lupus (actually ... my two brothers do as well however it is dormant in them.) and we are living normal lives. (My mother discovered she had it about 20 years ago, and I have had it since I was born )

Lupus isn't curable but the chances of it being fatal are very slim, since you've read up on it I'm sure you know that. It also will present itself to people in many different ways. For instance, my mother experienced the headaches and body aches (she still does but takes medication to limit the severity.) I on the other had experience extreme fatigue and sensitivity to light & the sun in general.

But be calm; the chances of you getting Lupus is around 1 in 1,000! So unless the doctor has reason to believe it is Lupus than you should not fret either, just remember you will be OK no matter what the prognosis.  :action-smiley-065:
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"Grant that my hands be steady, my aim be true, and my feet swift. And should the worst come to pass - grant me forgiveness"

Offline aec711

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Re: think i've found my problem :( lupus
« Reply #4 on: February 18, 2014, 09:20:03 PM »
True story - my sister lives a totally normal life - joint pain, fatigue etc.. but she takes meds that help.  Her 22 year old daughter just got diagnosed as well - she will be OK too.  But, I still think it is rosacea :)
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Offline mrdave92

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Re: think i've found my problem :( lupus
« Reply #5 on: February 19, 2014, 08:14:21 AM »
The doctor said it could possibly be lupus but they'd done an 'ANCA' test which was fine, apparently this is one of the tests they do? She said I probably need further tests from my GP but I don't understand it all or what it really means
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Offline greend

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Re: think i've found my problem :( lupus
« Reply #6 on: February 19, 2014, 09:15:13 AM »
Don't worry and just go back to see your doctor.  You are in good hands.  Having a normal ANA is a good sign because as you've said that is one of the tests they do for lupus.  My grandmother had it and lived to 87.  As a kid I didn't even know anything was wrong with her.  She always seemed fine.

You will be OK.  Let us know how everything goes.
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Offline mydogisnamedslippy

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Re: think i've found my problem :( lupus
« Reply #7 on: February 19, 2014, 09:28:37 AM »
 I agree with AEC711. That really really looks like Roseaca to me, which I also have. It's totally annoying, but absolutely won't hurt you. In fact, you know what helps cause it? ANXIETY AND STRESS!!!

You sound exactly like me, honestly...
I was afraid of MS, then I was afraid of Lupus...

I really really doubt you have lupus especially if you had a neg ANA, but even if you DID have Lupus--like a lot of people are saying--it is manageable.

But yea, I know Roseaca like the back of my hand, and that's what it looks like to me.
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Offline mrdave92

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Re: think i've found my problem :( lupus
« Reply #8 on: February 19, 2014, 10:04:36 AM »
It was an ANCA not an ANA, I think they're different so I need further tests but the doctor said it looks a lot like lupus and gave me some painkillers cos I'm aching terribly today
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Offline mydogisnamedslippy

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Re: think i've found my problem :( lupus
« Reply #9 on: February 19, 2014, 01:16:13 PM »
Does your face feel burney or stingy? Sometimes when i get roseaca i feel like my face has been sunburned and my eyes kind of sting also
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Offline mrdave92

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Re: think i've found my problem :( lupus
« Reply #10 on: February 19, 2014, 01:54:38 PM »
I sometimes feel a bit hot and stingy but other times it happens without me realising. My joint and body aches add up to lupus as well and can't really be explained by anxiety. I'm quite frightened about what the future holds if it's lupus, I've heard many people die from the disease although some are okay. Tonight I feel very sick and achy, I keep getting cold raindrop sensations on my skin when nothing's there. I wish they'd done an ANA instead of an ANCA test so I'd have more answers. Although those pictures don't show it, the rash mainly resembles a malar rash when it flares
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Offline greend

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Re: think i've found my problem :( lupus
« Reply #11 on: February 19, 2014, 02:28:19 PM »
I am wishing you well Mrdave.  Let us know how everything goes. Hugs to you!
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Offline mrdave92

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Re: think i've found my problem :( lupus
« Reply #12 on: February 19, 2014, 02:53:32 PM »
thanks for the well wishes. i've also been having a lot of mental problems recently but attributed them to anxiety brain fog, i now realise they're all typical of 'lupus fog' i'm so petrified right now about what the future holds. i've read many stories about people dying from lupus and i can't stop crying
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Offline NightBlizzard

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Re: think i've found my problem :( lupus
« Reply #13 on: February 19, 2014, 03:13:31 PM »
Calm down! Lupus can be fatal - yes. But is that common? NO. By no means. In fact, most people who have Lupus die of things other than Lupus! Just like normal people! You're going to be fine. It can be painful, it can be ... weird. Sometimes if something is ailing me I have to ask myself - do I have a cold, or is this my Lupus flaring?

But stop reading things like that, because that does not encompass the majority of those who suffer from Lupus.
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"Grant that my hands be steady, my aim be true, and my feet swift. And should the worst come to pass - grant me forgiveness"

Offline mrdave92

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Re: think i've found my problem :( lupus
« Reply #14 on: February 19, 2014, 03:37:09 PM »
there are many articles reporting that Lupus affects men worse than women and that the disease targets their organs quickly leaving them with a worse prognosis. I wasn't aware of Lupus Fogs but it all adds up so well now
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