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Discussion Starter · #1 ·
Hi All! I know aches and pains are a part of lupus but I am still confused at what is lupus related and what isn't. Do you all get stiff and achy one day and then be almost fine the next? Do you all get more achy on one side and nothing on the other? I know some of my aches are due to being active and a tilted pelvis (the left side has more pain and aches than the right). My left hip is almost always in pain. Just not sure if the aches is age and exercise related or because of lupus. It seems that I keep getting worse and I was Ok for about 4 years. Doc keeps adding medicine and thing get better and then boom, back to being tired and achy. I am very lucky that I can maintain a pretty normal life and have no organ involvement but being in pain and having trouble getting up is getting very old.
 

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Aches and pains are definitely part of Lupus. The pattern of pain can change from hour to hour and yes there are days of no pain at all. Eventually I learned to live with and ignore a certain level of pain. Learning to listen to my body helped me lessen the big flare ups.

There may be something else going on with your hip. Have you had a recent x-ray?

Exercise can be good for your joints as long as you don't overdo. I know you love running but you may also need to alternate in some lower impact exercise. My daughter is a runner also and she found rotating in some days on the treadmill instead of pounding the pavement helped her.

I hope you find the balance that works for you.

Take care,
Lazylegs
 

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Discussion Starter · #3 ·
Thanks for responding. My hip is more achy because there is some wear and tear which I know about through an MRI. I have not really been running, had to switch to biking and walking. Guess the lupus makes things worse. It seems my muscles are also achy now whereas they were never like that and when I get an injury it lasts longer. I hurt my one finger and my knee a while ago and the pain comes and goes. My thumb joints are always killing me especially when I use my hands a lot. It stinks because I work with little kids and am a knitter. It is not fun living with pain. Sorry to complain here but no one around here understands what it is like.

It is hard to listen to my body because some days it is fine and other days it is not. When I take it easy it seems that I ache more, like moving helps. I don't know. Thanks for listening.
 

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Howdy,
For some reason I can tell Lupus (auto-immune) pain in joints or muscles from those I acquire in the dojo. Unfortunately, I can't tell you how I can tell.
Listening to my body is all fine save for the fact that sometimes it my body speaks in Ugaritic!
One thing about SLE at least is that it is madenningly unpredictable. There is no obvious positive causality and yet one can do any number of things to reach a negative life experience, e.g., a lot more pain and fatigue.
All the best,
Douglas+
 

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I agree that the unpredictability is maddening, and as far as exercise goes, my rheumy says it's so important, but equally important not to overdo. He acknowledges that it's hard to know from one day to the next what/how much you can do. He calls it a "moving target" and he's so right. What is fine to do one day, will cause pain and stiffness another. I never have been able to determine what pain is the lupus, what is the Sjogren's what is fibro or what is just getting older, so I just do everything in moderation. I still have bad days, but not as bad as it could be.
 
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