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Discussion Starter · #1 ·
Hi all, I have not got a clue about Lupus and feel so stupid asking for help but I think I need some:eek: I will briefly explain:
In April I got a bright red rash across my nose but just ignored it thinking it would go away, it just got redder so I eventually went along to my GP who mentioned Lupus but then after some blood tests said no it was Rosasha(sp) he gave me anti-biotics to take for a month and I was quite happy:lol: During that month my skin flared up every-where skin peeling etc I went back after my month(I hate bothering the docs) and he was mad I waited so long as he then said the pills had made me photo-sensitive and the sun was burning my skin:eek: stop taking straight away but needed to see a specialist. Today I seen a dermotologist and because I still have a bad rash mostly on my stomach and back but lots else where, she would need to do a biopsy and lots more tests, I get them on Thursday and she said I had Lupus. I am always very tired and get really sore joints but what I never said before was that I have Epilepsy and put all my systoms down to that always have!! I don't know what to think now, HELP!! Sorry I did say this was brief:rotfl:
 

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Hi Pixi, Im new to all of this too but just wanted to say hi and to tell you NOT to appologise for asking for help! We ALL need it at some point especially when we first get a diagnosis.
Im sure people with lots more experience than me will be along shortly to offer advice but in the mean time Im glad youve found this site. Its full of lovely people all willing to 'chip in' and share experiences and offer some really helpful tips. :) So welcome :hehe:
 

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Hi Pixie,

You need to tell your doctors symptoms that you have. Leaving one out might be the answer to the puzzle.

You have come to the right place for up to date information on lupus and all that goes with it.
The members here are very supportive and willing to share their experiences with dealing with lupus in their lives.

I have learned the hard way.;) That pushing yourself when you are fatigued will only result in more fatigue and pain. You will need to learn to listen to your body and not over do.

Have a good look around the site and post questions.

Take care,
Lyn
 

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Hi and welcome to the site. It is a great place to find info and support. It must have been a shock finding out about lupus so quickly. It will take some time to sink in and get the meds right to help you. Are you going to be under the care of a rheumy or a dermy? What meds have you been started on?

Find out as much as you can about lupus, there are links at the top of this page to the lupus site which has loads of info. It can help if you understand the illness. Keep posting any questions you may have and let us know how you are doing.

Take care

Deb
 

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Hi Pixie,

Sorry for what brings you here but happy that you found this site.

Knowledge is Power so read all you can and come here for information too. I have learned more from these folks then my own doctors.

I hope you find this site helpful and join us in the chatroom sometime.
 

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Hi and welcome,
It is scary to think you have lupus and even more so if you have been searching the net. I went hope and typed the search and cried for hours. There was nothing positive anywhere I looked. To say the least I freaked myself out so bad I did not want to know if I had it. I went anyway and sure enough.

It is like any other disease you will learn to handle it and to adjust when you need to. It seems you already know how to do that. You will make more changes in your life but they will all be to help you. Take one step at a time and do the tests and go from there.

There are so many smart and helpful people on this site that will help you all the way and a lot of them are really good at listening too. I wish I had this site when I found out I had lupus it would of made things easier to handle for me.

Let us know how things go with you and good luck with your tests.
 

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Discussion Starter · #7 ·
Had my tests today

Thanks for the great welcome:) I had my tests today, blood, urine, blood pressure and skin biopsy. I never really got to speak to my dermotolist much as she had squeezed my tests in after seeing me on Mon. She told me the tests were just to confirm her diagnoses of SLE, what the heck that is I must go clue up on things:rolleyes::rolleyes:
She gave me another steriod cream to put on all affected areas, that will take a while, and a moisturiser for all over and instead of soap and factor 50 suncream which I must wear every-day:eek: It will take even longer to get out in the mornings!
How do I know all my systoms???? My epilepsy drugs make me so tired and generally feel awful all the time so how can I tell??? I always thought sore bones, joints etc were caused by them? I really need more info:sad:
I dont feel like crying or getting upset, WHY???
 

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Hello Pixie

I like you have had to recently come to terms with Lupus.

This is the start of a long road and will take a little while to travel, you are NOT ALONE.

I still have days thinking what why how..... and days where i can not think at all.

I suggest writing down all the questions you want to ask and take them to your next drs appt and go from there. Looking on the internet is ok but do used recognised sites. And check locally if you have a lupus support group it could be a real life saver.

I really wish you well and hope things get to an even keel for you soon

Regards Nicky
 
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