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Discussion Starter · #1 ·
I guess I havent really come to terms with the fact that I have lupus. I think I have, when everything is going smooth with only mild symptoms, but every time I am knocked over with overwhelming fatigue like I'm experiencing now, I get in a panic thinking I must have cancer or something.

It's not like I haven't went thru this several times in the last 3 yrs. I try to tell myself that if I did have cancer that I would probably be dead by now. I was so afraid when I first got so sick and didn't know what was wrong, that I was going to find out that I had cancer...guess that is why I still get frighten by this terrible fatigue.

Just wondering if anyone else has these moments or am I just a little crazy!

P.s...Besides the fatigue, I am also having chest pain...mostly when I laugh or move a certain way. Never had this before.

Mary
 

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Hi Mary,:hug:
Yes many of us feel that way.

Many's the time I've felt that......OK I have lupus.........but can it be right to feel this horrible/tired/achy or whatever.
I hate that abnormal fatigue and really resent the time it takes away from me
but i am adjusting now.........it takes a while.
I hope you have good docs looking after you.

I would get the chest pain checked out , it could be a number of things....some fairly serious. It sounds a bit like costochondritis though, or inflammation of the small joints of the ribs. There are several threads about it if you want to do a search.

Take care.........we're in this lupie boat together
 

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elisabethm
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Hi Mary i think that we all have that feeling i know i do right now i am done in just now even sitting here is tiersome but.Ifeel i need to get up not dressed sister came in to see if i would go shopping with her she took one look at me and said dont bother as you look so tierd.I will be heading back to bed in about half an hour i hate this feeling.Hands And Feet are swollen so tierd hope once i get up again i will feel better hope you are the same Elisabeth
 

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(((((mary)))))

I think we have all felt like this at some point with lupus,:sad: so you are not alone.

I agree with bigsis' good advice that you should get your chest pain checked out...I have had chest pain when I have been very flared but it is always worth a trip to your gp just to make sure it is nothing else.

good luck & let us know how you get on mary
hugs to you :there:
take care..karen x

(((Elisabeth)))..I hope you feel better soon..hugs to you x
 

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I've had my moments where I've thought the same thing too.

It IS scary sometimes what happens to us, it's not normal after all! For me, I get the most scared the longer the new/terrible symptoms last. I've even said the exact same thing to myself... that if it was cancer I'd be dead by now surely! This in a way to attempt to reassure myself it isn't cancer that is being missed of course.

For you, the most likely culprit is costochondritis (inflammation of rib cage essentially). Other less likely possibilites are pleuritis (more likely if it's pain upon breathing in though) and pericarditis. I hope it eases for you soon...
 

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Looks like the above posts covered it all

Hope things get better :)
 

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Discussion Starter · #7 ·
Just wanted to say that I appreciate the replies. I have felt a bit better today. It is reassuring to know that others have felt so frightened by the fatigue. I guess that I live in denial about having lupus when I'm not feeling symptoms.

Another question...my bloods have all been good for the last 6 months so I was wondering, is it normal to have bouts of fatigue and pain even if labs show normal? My fatigue is just as severe as it was when I was first DX'ed....feels like my brain just shuts down and everything goes into slow motion for me.....oh well, there's always the chance that tomorrow will be better.

Take care,
Mary
 

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(((((((((Mary)))))))))))
Yes, the depth of the fatigue can be frightening. And sometimes the odd pains can as well. I can completely relate to what you're saying.

As for the blood work -- my blood work has never been positive (except for a couple of ANA results, which then fell below the line) for anything. My primary Sjogren's dx was through a salivary gland biopsy and the on-again/off-again lupus dx just depends on which way the wind is blowing and which dr. in the practice I see. That doesn't tell you much, but that I manage to feel quite wretched with completely normal blood work. :lol:

I hope you feel better soon. Are you on plaquenil? What other meds do you take? I think you should mention the chest pain to your doctor. When I was first ill I was having costo chondritis (sp?), but it cleared up when I started prednisone. That was scary and I was afraid I was having a heart attack all the time. Regardless of what you think it might be, it's never good to ignore chest pain.

Keep us posted on how you're doing.

Sunny
 

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Discussion Starter · #9 ·
Thanks Sunny,
It makes me feel better that you feel rotten even when your labs show normal to....sorry, that didn't come out right but I hope you understand what I mean. I just thought that I shouldn't be having symptoms when everything looks normal with the labs. I have an appt. next month so I will definitely tell him about my chest pain.

I am on plaquenil for past 3 yrs...took prednisone back in the summer and it was the only time I really felt like a normal person but it caused terrible stomach pains and weight gain so haven't had any since.

My doctor doesn't like to give it unless there is organ involvement(mine was for cns problems) but it sure gave me loads of energy. Sure would like to have some now to kick this fatigue in the behind! I don't think doctors understand how terrible the fatigue is and how much it takes away from our life...you almost feel like a living dead person when you have this kind of fatigue.

I have a birthday party to go to in the late evening and unfortunately I am starting to feel drug down already. Wouldn't go, but it is for my sister and all of my family will be there. Don't want them to worry about me and they would, if i didn't show up.

Take care everyone,
Mary
 
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