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Discussion Starter #1
im very curious to know how many of us dont have pain with lupus. i know that most of us do but i am one that hardly ever get pain along with lupus.

even though i have experienced chostochondritis and mild joint pain i have never experienced an every day pain like alot of people with lupus do.
 

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Hi Sushi :wavey:

I have been a member of this site since 2004 and i don't think i have come across anyone who doesn't suffer with pain in one way or another.

Did you suffer with pain when you first started with lupus and is it the meds that help keep you pain free.
Most people who have lupus don't just suffer with lupus they tend to have other problems/illnesses along side so maybe thats why there isn't many people who are pain free.

I really hope you continue to be pain free as been in pain every day is no fun at all.

Take care :hug: Jo :hug:
 

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There isn't a day that goes by with something in pain.

You are very lucky Sushi.

Love,
Lyn
 

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Pollianna
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I am glad you don't get pain Sushi, you must be doing something really right. I live in constant pain which gets worse with burning in my knees sooo bad I can't tolerate it. i get chest pain bone pain and every joint aches. having said that I do push myself when I shouldn't :worried:

keep doing what yr doing girl xxx
 

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Oh Sushi, I am jealous! Wrote in my diary yesterday... I would like one day without a single pain... that is my aim! I feel like a moaning old bag most days and hate it and how it makes me feel, it is so unpredictable too, not sure what bit its going to hit next....:(
Claire X
 

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Hi Sushi

Until 5 months ago, I only had occasional pain - severe muscle cramps and shooting pains - as all my problems were essentially neurological. Now, however, I seem to ache everywhere and the severe cramps seem to have ceased.

So - no danger here of getting bored with the same symptoms every day! :wink2:

Merle
 

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Hi Sushi

Its great that you dont suffer daily with pain :) However, like the other posters, Im one who suffers daily chronic pain mostly in my arms, knees, back, shoulders, hips and sometimes hands and feet. I do however have fibromyalgia and degenerative arthritis of the spine as well so perhaps these are the main culprits for my daily pain?

Take care and may you keep on keeping pain free!
Joan:rose:
 

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Dear Sushi

Just so you don't feel all alone, I do not suffer constant pain, thank you Lord. I have got off very lightly in all respects but one. However before I got good treatment there were times I could hardly get upstairs or stand for long or get up from a chair without pain. My knees, hips lower spine and ankles seemed the main problems. I also went through a phase when from time to time I had no grip in my hands. I'd pick something up and drop it.
It was put down to lack of exercise overweight and so on, " all your own fault" stuff. Now my joints are in a better state than they were 20 years ago

I did once have a dreadful six weeks when each set of joints in turn starting from ankles up was affected morning, evening and night by crippling stiffness and pain rheumatoid arthritis type I gather. It went as rapidly as it came

I am always humbled and aghast by what our dear friends here go through.

I suspect that for the most part the people who do not have pain problems do not post here. Some people suffer mainly from neuro issues for examples with severe problems that include other sorts of pain and disability, certainly other sorts of suffering.

:)

Clare
 

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Hi Sushi

May long you live without pain:)

Pain dominates my life more or less all the time.
I still know that I'm lucky as I know of others who are worse off than me in pain and other respects.

I did have a time pre diagnosis where fatigue was the problem and not pain.

Nicky
 

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elisabethm
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HI suzi i wish i could just get one day that i could get up and say i dont have to take pain meds before i even put the kettle for my tea.I am the same as the rest may you long continue to be pain free Best Wishes Elisabeth
 

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Discussion Starter #11
i really wish i can take everyones pain away. i think about you guys everyday and hope for a cure or much better treatment for this dreadful disease.

thanks for responding to this post, dont get me wrong i do get pain here and there especially my chest but its not an everyday pain. again, i really wish that we didnt have to suffer like this. thank you for your honesty. Lydia
 

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I have only had a few pain free periods since diagnosis, the best one was the remission I got when I was pregnant. Felt NORMAL/healthy then! ;) In the last 4 years though, I can probably count on my fingers the number of days without pain of some sort holding me back. :(

I think the statistic is that 90% of lupus patients will have joint pain as a symptom. But of course there are other types of pain beyond that so to be largely pain free is a very fortunate thing and I hope it lasts for you!
 

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Joint pain is one of my major symptoms too - particularly my feet, although this symptom only appeared just before Christmas, my original hospital referral came as I complained of numb hands, not pain as such. The numb hands thing was sudden, I woke up one morning with it last July (although I've always had bad circulation, feel the cold pretty quick, my hands turn white and blue with cold).

Although strangely today my foot pain is not as bad as it usually is. However I now have sharp pains in my head. Can't win!
 

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Hi Friends,

I can say I am blessed in the respect, that I don't usually have pain in my hands. They do swell badly, and sometimes ache, but for the most part,
they don't bother me. :) I am so happy about it because, I love to crochet.

In fact, I learned to crochet because of having lupus and fibro. I can say, I think it may have saved my life. I know that sounds like an odd thing to say, but, it was they only thing that took my mind off the agony I was in.

My husband, tells me the same thing. He remembers me unable to sleep coming out to the front room, and finding me in tears, or trying to crochet.

I am thankful for my hands that work..I do so enjoy crocheting. Thank you,
Lord, for my reprieve.

ox Sandy
 
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