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Discussion Starter · #1 ·
Just read on someones post someone talking about Lupus weakness. Is there Lupus weakness? I keep telling them how weak I am but nobody seems to know why.
It really is ridiculous that just getting out of a chair or walking up a few steps is getting to be a major hurdle.
Ive had this in varying degrees for years. When I was diagnosed with RA I thought it was that. Now I dont know. Im diagnosed with Lupus SLE and Fibromyalgia.
Sal x
 

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Hi Sal,

I understand what you mean. Some days I feel like I need a crane to help me up :).

Weakness can be caused by many things. Fatigue, nerves, muscles, anemia, thyroid, low B12 and more are all factors. You need to stress to the doctor how severe the weakness is so the cause can be investigated.

Take care,
Lazylegs
 

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Yes, I know that weakness was a part of my disease, only because it improved once the meds kicked in. I used to struggle to get up the stairs, though I wasn't tired. I just didn't have the strength. At my last visit I told the RD that I did have more energy, in addition to the increased muscle strength and it surprised me because I didn't really think I had fatigue issues. He said sometimes it's such a gradual process that we don't even realize we're more tired than usual. We forget what it's like to be normal, until we start to feel better, than we can see the difference. Once your disease is under better control, perhaps then you'll start to feel stronger. Be sure to mention it to your doctor.
 

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yeah i'm the same way. if i over-exert myself like i did yesterday, i'll end up sleeping for ten hours or more. a lot of times when i go run a few errands, i feel so drained that i need to take a nap. it really interferes with my life. one thing you can read about it is called "the spoon theory". it explains this pretty well and it gives you insight on how to discuss it with others around you. it can be found at

http://www.butyoudontlooksick.com/na...poonTheory.pdf
 

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Hi I have exactly the same thing. Sometimes the weakness is so bad I cant even open my eyes let alone sit up in bed. Climbing the stairs seems like climbing everest and to get out of a chair is like running a marathon!!! I have never been able to figure out whether it is tiredness, muscle weakness, stiffness or just disease activity. Its so hard cos just to do what others take for granted is so hard, and if you try to explain people say ' but you look so well'!!!!
I know it sounds odd but it is so comforting to think that there are others who have the same thing as sometimes I wonder if I am just lazy orgoing mad or both!!!
 

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LOL! That bit about "But you look so well!" really rings true. That's a big part of the problem. Most of us don't look "sick" on the outside much of the time. I swear sometimes I'm tempted to fake a little limp or something just to make a point that I may look normal on the outside, but there's a war going on inside. I haven't resorted to that yet, but it's tempting! :wink2:
 

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let me tell you about the limping! i limp a lot!!!!! i'm in my mid-20s, so i have people always giving me weird looks or pity looks! i hate it so much. especially from some elderly people, they give me harassing looks--almost like i'm mocking them or something! needless, to say, the battle is real, no matter how you look. over time you start to not care what others think of you and you just try your best to deal with the hand of cards you were dealt.
 

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Discussion Starter · #8 ·
aww what a lovely lot you are!!! Im inawwed (god knows how y0u spell that) of you all.
Its such a lonely thing this. and here you all know . . you understand. I look fine.. Who is gonna know how I struggle to look so normal. Me thinks I whinge too much. Theres loads worse than me.. Just get on with it.. stop whinging woman.
Had a great night out tonight. I had to sit down.. but I had a dance too. Nobody will know how knackered I feel. They just think shes had too much wine.. which i have of course but thats not why I walk so bad.
You are all lovely.. and give me strength.
all my love to you all.. and thanks for your replies and support.
Luv Sal xx
 
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