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As i am new to lupus i wondered if this can happen.....i have been in ain for weeks and very tired, i am not yet taking meds but due to start next week. Is it normal or possible with lupus you can be in weeks of pain have one day when you feel so much better, no pains at all and the next day they are back?

Sorry if this sounds daft but this is what happened to me (i get so worried that it is all in my head) as i have been told for years that it is!!

Jane
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I was diagnosed Aug 7th. Prior to that I had joint pain, flu like symptoms and headaches. The fatigue was the killer. Anyway now on meds and feel better - haven't had a day of feeling completly well, but everything is now managable. I'll have 'better' better days (if that makes sense) but everyday the is a reminder of the illness.

Once the meds kick in hopefully they'll work and you will feel better - if not totally 100%. Hope this helps.
 

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Hello Jane, can't remember if I've said welcome before, so welcome too :)

Oh yes, don't worry, that is perfectly normal for lupus. My GP said to me that it was rather like a sea with peaks and troughs. The meds hopefully remove the high peaks and deep troughs so that you only have gentle waves.

I think the "letter to normals" found here in the family and friends section describes the up and downness of the disease rather well. I'm sure you'll find it rings quite a few bells.

http://www.thelupussite.com/forum/showthread.php?t=36086

Hopefully, you will begin to feel a lot better with medication. In the meantime, hugs
:hug:
Katharine
 

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Jane, you have already been reassured by Katherine but I wanted to say that very, very rarely I get perhaps one or two days when I really feel pretty good.

This is not in your head, Doctors do not diagnose Lupus lightly.
x Lola
 

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Discussion Starter #5
thanks

thank you all for your replies, im so pleased i found this site t is great to speak to others who know how i feel.

It is a horrible illness, i am suffering quite bad with anxiety on top of it all, it has been alot worse the last day or so as i have a stinking cold. Does anyone else suffer with aniexty? i was wondering 2hether it goes hand in hand with lupus as i dont seem to be anxious when im not feeling too bad!

Im also guessing my immune system is low a i seem to only have to stand next to someone with a cold for a minute and i catch it!!

Jane
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Hi Jane,

Welcome to a great place.

I, like you and many others have good days and bad and my symptoms do wax and wane a lot. Some days I can set the world on fire and other days I can't get out of the bed.

Anxiety is something I have been dealing with since 1993....long before my dx of Lupus. I find that a lot of people with auto immune issues do suffer with some sort or anxiety or panic disorders, yet I do not know if they go hand in hand.

Talk with your doctor about getting on some medicine to help you with this. No need to suffer if you do not have to. The right cocktail of drugs makes it better. For me, a anti depressant coupled with a anti anxiety drug seems to work well.

Good luck. Let us know how you get along and again, welcome. You will find a lot of very supportive folks at this board. I am thrilled I found this place.:wink2:
 

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Hello again Jane,

Along with depression, anxiety and panic attacks can be part and parcel of the actual disease itself. There are many ways of helping you to deal with it including things like cognitive behavioural therapy which I have heard many here speak very highly of.

It is something that should be mentioned to your docs. Don't be afraid or embarrassed to mention it, a good doc should know that it can be a very real part of your disease process.

Sometimes just knowing that it can be part of the disease and it is not just "in your head" can make it a tiny bit easier to deal with.

I'm afriad I can't help more, hopefully someone who has suffered from it themselves will be along soon with some more concrete info.

Katharine
 

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Hi Jane

Sorry to hear that you are having such a tough time. I am newly diagnosed too and have been on a rollercoaster over the last few months. Some days (not many) I feel ok but there is no pattern to it as far as I can tell. I started meds about 3 weeks ago and haven't noticed a difference yet but it takes a few months I think.

I hope that you get some relief soon and get started on some meds.
Best wishes,
Meriel
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Hi Jane

It is frustrating, the ups and downs of lupus, but I have found it gets easier with time. It is still only 18 months since I was diagnosed but already I feel I know my body and my symptoms well enough to recognise the beginnings of a flare, or a bad day, and how to deal with it. Not that that stops it sucking to be exhausted and in pain but it's less frightening when you know that the really bad times do pass.

Also, for me anxiety and depression come with peaks in fatigue. I become very difficult to be around and sometimes think I would progress to full-on panic attack if my partner wasn't there (either in person or on the phone) to bring me down. It feels odd to be that way when the rest of the time I'm a very positive, practical person.

Anyway, I hope that you find your own ways to manage and that life gets a little easier.

All the best

Kate
 
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