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Old 04-05-2013, 03:07 PM   #1
Join Date: Apr 2013
Location: California, USA
Posts: 3
rosebliss HB User
Diagnosed one week ago with Lupus

I was just diagnosed with Lupus still need more lab, x rays,
just hit me kind of hard when I heard some of the problems that can happen. Especially neurological manifestations etc....feeling over whelmed and hoping someone can talk a little bit about what they did when first dx with Lupus.
Thank you for any info, feedback, much appreciated!

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Old 04-06-2013, 10:32 AM   #2
Join Date: Mar 2013
Posts: 5
kkvane HB User
Re: Diagnosed one week ago with Lupus

Hi! My diagnosis, though un specified, came about a month ago. I had been having symptoms for quite some time, and others in my family have AI, so I wasn't really surprised. But still...I am finding it to be a challenging adjustment, both mentally and physically. My best advice is to take each day as it comes (there is no definite path these illnesses take - we are all different), go with the flow, and keep a positive attitude (sometimes easier said than done ). When you're having good days, enjoy it!! You'll find you have a new appreciation for some everyday things. And...when you need to vent, find information, or celebrate your progress, come to these boards. It really helps to know you're not alone, and there are some great people here. Hugs...

Old 04-09-2013, 11:12 AM   #3
Junior Member
Join Date: Apr 2013
Location: Seattle, WA, USA
Posts: 12
Aahme75 HB User
Re: Diagnosed one week ago with Lupus

I was recently diagnosed too. It's really difficult. I'm learning there is only so much your doctor and drugs can do. The rest is faith. And love for yourself. I've neglected myself for so many years putting others first but that's not a selfless thing. I was being selfish by not wanting to put the work in that is required to take care of myself. Now I don't have a choice but God is helping me learn to love myself and take care of myself.

For me the really hard part to accept was my limitations when I'm in a flare. Not being able to clean the house like I use to or play with my kids or go for a jog. Even grocery shopping is difficult sometimes. I still have a hard time accepting the limitations. Even today.

Hang in there. Learn as much as you can and most importantly, stay connected to people.

Old 04-12-2013, 04:06 PM   #4
tey23nov's Avatar
Join Date: Apr 2013
Location: United States
Posts: 5
tey23nov HB User
Re: Diagnosed one week ago with Lupus

I was recently diagnosed with Lupus SLE
with Erythematosis. I'm 37 recently seperated
And I have 3 daughters. I am lost, I look in the
Mirror and I don't recognize who is in it.
I am depressed and tired and I used to be this active
Energetic person now I get tired going up my stairs
I have to start all these meds that have all these
Side effects and I was told to not stress how do you not
Stress over all this! I'm sorry I should be positive but it's so hard
Thanks for listening

Old 04-12-2013, 04:33 PM   #5
Join Date: Feb 2004
Posts: 5,328
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Diagnosed one week ago with Lupus

tey23nov, hi and welcome. I'm sorry for your diagnosis but glad that at least you know, so you can get the help you need. While I don't know which meds have been prescribed, you won't necessarily get all the side effects listed. They ALWAYS list everything, they have to.

I've taken Plaquenil for over a decade. It can take 4-6 months to reach its full effect, but I felt some relief long before that. At first, when driving at night, I got a small halo effect, but that only lasted a week or so.

Since you just found us, maybe you'd like to start a new thread of your own, just so more people will see it & get to meet you? On the main lupus screen, select the NEW THREAD box in the upper left, then give your thread a title. (You don't have to, of course.)

It took me so long to get a diagnosis, that in one way I was really relieved, but I was depressed too, mainly because I didn't think I'd ever feel any better... but I was wrong about that, fortunately. So I hope your meds kick in fast. Also, reading helped me: I borrowed library books on lupus.

We're always here when you feel like talking. With my best wishes to you and your daughters, too, sincerely, Vee

Old 04-18-2013, 04:53 PM   #6
Join Date: Apr 2013
Location: Indiana Pa
Posts: 2
Hidee068 HB User
Re: Diagnosed one week ago with Lupus

Hi Rose! I was diagnosed 2yrs ago and I am still coming to terms with this disease! From what I've learned so far is that everyone is different! I didn't have too many flares @ first and now I've had 3 very bad ones that lasted 1 to 3 days! Days that I could not get out of bed! I frankly felt like I had been hit by a truck and left for dead! I get foggy in the head and cannot make decisions! And the crying never stopped! My Dr told me that 90percent of lupus patients become depressed,so there you go! All I can say is i HOPE YOU HAVE A GOOD SUPPORT SYSTEM! Unlike me, I do not! It's very hard to live with this disease when you have noone that understands the pain and fatigue! Or just the overwhelming sense of being alone! I wish you good health and few flares! HIDEE

Old 04-18-2013, 06:45 PM   #7
Join Date: Feb 2004
Posts: 5,328
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Re: Diagnosed one week ago with Lupus

Hidee, just want to say hi & welcome. I also had strange up's & down's this year, worse than in past winters. Everyone around me had colds, flu, and GI viruses, yet I seemed to process those differently: I'd get what felt like one part "whatever" plus one part lupus. How are you feeling now? I'm glad you found us. Best wishes to you, Vee

P.S. I'm from PA and still miss it after all these years.

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