I was diagnosed 13 years ago (now 25) and I have been through the ringer with lupus. The doctors say I have a “mean” lupus… Anyways I can’t remember the last time that I have been completely pain free. The past week though I haven’t had any pain. It has been wonderful not having pain, but I feel like I am missing something, like without the pain I am missing a part of me. Has anyone else had anything similar to this?
Angel
No! Lol. I enjoy the good days because I know they won't last forever. Glad you're feeling good this week, try not to over-do it. It will probably come back to bite you. :P
First of all, yahoo for your remission! May it last a longggg time!! Yes when I the 2 weeks of remission, I would have fleeting thoughts & it would hit me sometimes "what am I forgetting" or "what am I not doing" feeling like something was missing, but then I'd remember 'Oh yeah, the pain is gone."
My Dx is 10 months old. Currently trying for 2nd time to taper Prednisione. Also taking Imuran 100mg. Feeling not too bad at the moment; but assumed it was because I'm not really doing much at all & resting as often as I want (family grown).
Swelling in knee is down, walking naturally. Wrists slightly swollen & right hand was shaking this evening when trying to apply nail-polish (new issue).
I cant imagine 13 years of Lupus.
Much of my hair gone (was very long), nails O.K. again now. Hands fully functional again. Skin a bit of a mess still but much improved. Face has 'sores' that look pretty crook but not a lot of them.
No bad pain. Rolling cramp like 'grabs' in rib & back area that lock me up.
Very pleased you are in a good spot at the moment. I really hope it stays that way for a while. If I ever get this first flare suppressed I'm aiming at a l o n g remission.
Just go with the flow & appreciate anything you have put off doing because of pain. Best Wishes to you. Kaz xo
I don't remember a time in my life that I was totally pain free.
Kaz, I remember saying the same thing. To look at my mother who had lupus for 30 years, I couldn't imagine it. The thought seemed overwhelming. Now here I am 35+ years into it, and realizing you just take one moment at a time, and the years do pass quickly. Mom has now had it 65 years.
Kaz said:
I cant imagine 13 years of Lupus.
After all these years, my problem is on a good day, I think I could be like I used to be and get excited about what I will do tomorrow. Then, I wake up the next day unable to do anything and my hopes are dashed. I was diagnosed about 10 years ago. I am now 60. I spend a lot of time in bed, due to pain, fatigue and somewhere the depression and aging slips into the two. When I have good days, it's usually due to extra meds I take because I must be some place (e.g. doctor's appointment, important social event such as wedding). When I feel good when I wake up (rare), I have never missed the symptoms, yet I understand the old "toothache" scenario about missing pain. Enjoy the good days, you may be missing the pain because you know it is coming! Don't mean to be negative, but do relish those good days as much as you can. All the best to you...
So far I have not been in your position but it gives me hope 
Enjoy!! Stay well!!! Hope it lasts!!! Too bad you couldn’t predict this so you could plan something fun which I am sure you deserve.
Thanks guys. It’s good just to hear that others have felt this way. I was going to talk about it with nonlupus friends but they just wouldn’t understand. I wish that I found this site sooner 
I haven’t changed much in my lifestyle, as I lead a pretty active lifestyle and just live with the pain. But it’s nice to know I can enjoy my activities and not have to worry about “crashing” the next day and sleeping for 12 hours! The only thing that I can think of is that I have cut out almost all processed food, including diet coke. Maybe this has something to do with it.
Yeah for your remission. I too am in remission, for a year, not too sure if I am still in remission. My triggers are STRESS, I might have to stop working soon, not happy.
Angel,
A week pain free, YEAH! Enjoy while you can, but don't over do as we all have tendency to do when we are feeling well. A couple of weeks ago I had 2 days with no pain. I guess all the stars just aligned. I would certainly tell your Rhuemy about it if you stay pain free, because from what I have read it can go into remission...sometimes for you. That would be fantastic. please let us know how you are doing
Hugs XOXO
In October I had one day that I felt I was in total remission. Took 3 walks that day and was able to be pain and fatigue free. The following day everything was back to same with this disease. It was like I had to do everything I could in one day but knew it would all return
Just wish we could be granted more days like that and for you more weeks.
Hope that you are still having less pain
So the hand shaking is normal too?
Kaz said:
My Dx is 10 months old. Currently trying for 2nd time to taper Prednisione. Also taking Imuran 100mg. Feeling not too bad at the moment; but assumed it was because I'm not really doing much at all & resting as often as I want (family grown).
Swelling in knee is down, walking naturally. Wrists slightly swollen & right hand was shaking this evening when trying to apply nail-polish (new issue).
I cant imagine 13 years of Lupus.
Much of my hair gone (was very long), nails O.K. again now. Hands fully functional again. Skin a bit of a mess still but much improved. Face has 'sores' that look pretty crook but not a lot of them.
No bad pain. Rolling cramp like 'grabs' in rib & back area that lock me up.
Very pleased you are in a good spot at the moment. I really hope it stays that way for a while. If I ever get this first flare suppressed I'm aiming at a l o n g remission.
Just go with the flow & appreciate anything you have put off doing because of pain. Best Wishes to you. Kaz xo
No Babymadeline, trembling hand was new. I wouldn't have noticed it if not for the fact I was trying to apply nail polish. Seems O.K. today. Maybe just tired by end of day??
Hi !!!, enjoy it while it last , it's not like we always have those kind of days- without being Pain free!!! When there isn't alot of pressure we kind of over due it and make up for it a couple of days later . So enjoy the moment for now and don't over due it !!!...Beverly L.
Before my diagnosis, I had developed a tremor in my hands. Between that and the pain.. those are the reasons I stopped my artwork for a long time. It became too difficult to hold my pencils. After a year on Plaquenil I hardly saw it happen anymore. It does still occasionally, to a minor degree, if I'm really not feeling well. It's not a disruptive problem now though. Any time I hear someone say they are having this problem however, I would encourage them to consult their Dr because it's not "normal", even for "lupie norm", no. If it persists for anyone, they need to determine whether there is CNS involvement or perhaps something unrelated. I have known several people that insisted on just ignoring it, rather than bring it to their physician's attention.
babymadeline said:
So the hand shaking is normal too?
Oh, coffee causes tremors, uh, ok. I won't mention I have one large ice coffee a day. Uh, oh...LOL. Ok.
-.- You've already demonstrated that you and your coffee are inseparable.. even when you know better. :-P
Coffee causes tremors mainly when the drinker is unaccustomed to the consumption of it. The type you mentioned that is familial, I've seen.. my ex has it. His father had it too. It doesn't seem to affect anything or be related to anything serious, but it's definitely not going away like mine did. In his case, coffee or no coffee, it stays the same.
jujubeee said:
My mother had hand tremors. She had what the doc called "familial tremors". It would get worse with stress and coffee. I was told it is genetic and as long as it doesn't come with any other symptoms like head nodding during tremors that it was not a symptom of anything of real concern. She had balance issues too which was part of it. I think another word for it is "essentia tremors". I think a neurologist can rule out if it is serious with reflex and muscle testing.
I think sometimes thyroid issues can be responsible for it too. Interesting enough, my grandmother with lupus had an underactive thyroid but my mothers was normal.
I would try ruling out coffee and caffeine and see if it improves. (BOY AM I GLAD ITS NOT ME CUTTING DOWN ON COFFEE) LOL Tala...hahaha....glad to see you here my friend! :)
Love Julie
I guess i have more friends that seem to understand what i am going thru and i have a great family that i know will be there for me when i need them. my children are all adults 40 yrs old 44 yrs old 50 and 51 years old.my husband of 52 years will always be there when and if a i real help. I feel bad for you "girls" that don't seem to have the understanding family that i have.
freightliner
Kaz,
Have you had your kidney's checked? Pain in back and ribs?
Here's to getting you better, sweetie.
DeAnne
babymadeline said:
So the hand shaking is normal too?
Kaz said:My Dx is 10 months old. Currently trying for 2nd time to taper Prednisione. Also taking Imuran 100mg. Feeling not too bad at the moment; but assumed it was because I'm not really doing much at all & resting as often as I want (family grown).
Swelling in knee is down, walking naturally. Wrists slightly swollen & right hand was shaking this evening when trying to apply nail-polish (new issue).
I cant imagine 13 years of Lupus.
Much of my hair gone (was very long), nails O.K. again now. Hands fully functional again. Skin a bit of a mess still but much improved. Face has 'sores' that look pretty crook but not a lot of them.
No bad pain. Rolling cramp like 'grabs' in rib & back area that lock me up.
Very pleased you are in a good spot at the moment. I really hope it stays that way for a while. If I ever get this first flare suppressed I'm aiming at a l o n g remission.
Just go with the flow & appreciate anything you have put off doing because of pain. Best Wishes to you. Kaz xo