View Full Version : I just don't understand!!!!!!!!!

06-01-2006, 09:13 PM
I have done SO MUCH reading! I understand a LOT about this disease!! BUT, the thing that should be the freakin' easiest thing to know about this disease, I just can't wrap my mind around!!! I DON'T GET IT!!! :mad: :evil: :mad: :evil: :mad: :evil:

WHAT IS A FLARE??? I mean... my doctor keeps telling me that all of my blood work is stable, and that I am basically in a remission... But, I don't FEEL any better!!!

I am dizzy all of the time, NOW I HURT all of the time... So much sometimes that I can't even sleep because lying in one position just HURTS too much!! I'm walking with a cane, (something I NEVER had to do when I was at the stage of the disease almost killing me) I have to wear glasses suddenly, I can't go shopping without feeling like I am going to pass out... And NOW! My dizziness and pain and weakness and BLAH is getting so bad that I have to get a shower chair!!! But, I'm in REMISSION!!!!!!!!!!!!

I may just be dumb... But, I don't get it!! Is this just normal now? I mean, I can deal with it if it is... But, it's like... I don't know... I just don't understand...

06-02-2006, 04:14 AM
I've been wondering the same things! It seems like I feel worse when the doctors tell me I should be feeling better. They're reluctant to give me more pain meds because I've taken so many. I'm 23 and walking with a cane. I even have nerve damage. NERVE DAMAGE! :mad: I take 10 or more pills a day. Sleeping pills for the fibromyalgia, plaquinil, prednisone, percosets, klonopin... ugh does it ever end?

06-02-2006, 06:22 AM
I sure don't know! That must be so frustrating. :(
Is it possible some of the things you are feeling are effects from medication? I know the dizziness and blah-ness are effects I get from prednisone. And the bad vision! Now that your bloodwork is good, do you think your doctor will have you taper off some of the meds?

Hugs to you - and strength!

06-02-2006, 09:25 AM
Well, she's tapered me down to 5mgs of Prednisone and says that tapering down on Pred is why I am hurting so much... So, then she puts me on glucosamine!!!

So, I am now taking 42 pills a day!!! She hasn't lowered anything else, and says that she is going to keep me at 5 for a while on the Pred. From what I can see the Glucosamine does NOTHING!!!! And I have nothing for my muscle pain... And she does keep telling me that a lot of my symptoms are from meds... But, if I am in remission shouldn't I be off meds? Or getting there? Instead, anytime I try to go with out one or both of my diuretics I swell up like a balloon again!!

I'm just frustrated because I feel more geriatric as the days go by... I was thinking I needed to get a shower chair because of the dizziness and the pain in my legs... But, yesterday, I fell.... So, now I NEED it! It isn't just something that "might be a good idea"...

So, is a "flare" all about blood work? And how am I really supposed to know when I am in one, if I feel like this when I am in remission?

Thanks for letting me vent!

06-02-2006, 11:53 AM
Maybe glucosamine takes awhile to start working? I'm sorry you're hurting. And about the shower chair. I know what you mean about feeling geriatric. My boyfriend had to install a handrail in the stairway for me a few weeks ago and it just made me feel like an old lady. We probably should have had one anyway (it's just two straight walls) but to HAVE to do it to pull myself up, and keep from falling was depressing!

I'm having such a crappy day too, so I'll share your vent. I am starting to get a cold, AGAIN and that just seems to make everything ten times worse. And my brain is so fogged I've done about 10 minutes of real work all morning.

Here's hoping for better days to come.

06-24-2006, 08:03 PM
Hi SoleSinger, I vaguely remember reading somewhere, on a past site perhaps where many people complained of this. Somehow when the blood work was good, they felt horrible. And the opposite was true...when they felt good, the blood work was all out of whack. Wondering if things just take a while to 'catch up' or something.


06-24-2006, 10:00 PM
Well, the other thing I wonder... They say I'm in remission... But my rheum wants to up my CellCept to 3,000 mgs/day... That doesn't sound like better... that sounds like worse... :?: :?: :?:

06-25-2006, 08:53 AM
My doctor's have been telling me for a very long time that I am in remission. However, my muscles still ache, my joints are painful, the fatigue is relentless, I am still sensitive to the sun, and I hurt all over. I have good days and terrible days. I would venture to say that, to our doctor's, remission has more to do with lab and blood test results than with how we feel. Some of the major indicators of Lupus have probably reached a near normal level, so our doctor's begin to lower (or ween us off of) some medications while at the same time, increasing others (Look at it this way, when we go to a therapist, we are placed on low doses of anti-depressants: the better we get, the doctor begins to prescribe even higher doses of anti-depressants) and changing our medications based upon those test results. It is an enigma I know!
So, we still feel bad and are still on medications, but some of our lab and blood tests are reaching normal levels. My rheumatologist told me that full remission means that we may still have the disease, it's symptoms and even flares, but that we are able to manage all of these with few medications and hopefully, one day, with no medication. The goal is to get your lupus to a point where it sort of goes dormant or no longer requires medications.
Therefore, I do not expect to be symptom-free or medication-free with my Lupus Remission. I just expect to be able to limit the medications I take and to manage my Lupus with this small number of medicines.
Don't get me wrong, there are many people who have acheived full remission where they are free of symptoms and are no longer on any medications. That is possible and I hope to be there one day. In the meantime, try to remember that just as Lupus is different for each and every one of us - so is our form of remission. Your remission could be totally different from mine and you will have to treat and manage it in a way that is beneficial to you!
I wish you the best!
Peace and Blessings

06-25-2006, 09:43 AM
If it makes you feel any better, I know someone who had SLE as a teen with organ involvement. She stayed in hospital pretty much solid for a year, obviously was treated aggressively by necessity. When I met her she was in her late 30s and had been in remission for 20 years. She still had some joint pain, and would sometimes tire easily. She also was prone to gingivitis so she had to get her teeth cleaned every 4 months. But she worked full time, had an active social life, and exercised regularly. For all purposes you would never know she'd been sick.

I've also known others who were hospitalized with SLE as young women and 5 to 10 years later, led pretty "normal" lives, working etc. although with some symptoms and on some medications still.

So it is possible to be in remission. But I think it's really important to manage the illness and recovery, avoid stress as much as possible, and really listen well to your body when it's telling you to slow down.