I know lupus is unpredictable but is a flare when you are sick in pain or is that daily life forever? I am so so tired of hurting and feeling so bad all the time. Since I don’t have an official diagnosis yet I feel like I’m looked at as a hypochondriac or making it all up because I don’t know what is really wrong. Its not like I want to feel this way but its hard to explain to anyone. Neither me or my husband really know how this works . I realize it could take quite some time to get any kind of answers from my Dr but I have no idea what to expect.
Believe me, every person with diagnosed or undiagnosed Lupus feels as if they are going koo koo. You will at some level will always have to deal with the question: is this my Lupus or is it all in my head. Advice? Listen to your body and let it be your guide. Every person with an autoimmune issue presents in unique and different ways.
Just remember your Lupus ABC's.
Do not judge yourself or compare yourself to others.
Do the best you can to eat right and exercise even if a little.
Do stay as positive about your life and it's purpose as you can.
Do have people in your life whom you can rely on and accept help from.
Other than that, let the doctors put the necessary names to your symptoms but do not define yourself by them. You are you. Respect your symptoms.
My best to you in your quest in answering your questions. Just remember, some questions are never answered, no matter how much we want them to.
Take care of You
Mimi
It takes awhile to get a diagnosis, but some doctors will put you on plaquenil if you have all the symptoms. The blood work isn't always indicative of the disease. It also takes months for the medicine to kick in. There is hope of going into remission but it may take a long time. Most of the time it can be day to day.
Everything that mimi the bag lady said is true...take care of yourself!
Geneva
Great advice from Mimi the bag lady!
The advise already given is great. I just wanted to remind you to be your own advocate. No one knows your pain but you. You have to be the one to ask questions of your doctors. If you don't feel the doctors are listening to you or are dismissing your symptoms, move on to a new doctor. I agree that it will take time to come to a diagnosis. After a year of consultations, I still don't have a diagnosis yet. I am being treated as if I have lupus, fibro, sjogrens and raynauds. What? I know, that's what I said. Hang in there, things will get better.
I think this is a fantastic question. I was just talking to hubby today and admitting to him that I have little to no hope of remission as I would define it. My definition would be: no pain, no inflammation, no stiffness, no fatigue. I've heard that different doctors define remission in different ways. A common measurement is whether it's showing up in your bloodwork. Well, since mine has NEVER shown up in my bloodwork, does that mean I'm in remission? Most certainly NOT. So I'm doubtful about remission.
Further making me doubt is that I have a friend who also has Lupus. She's told me that she's in remission. But having spent time with her recently (during an extremely stressful time in her life, I have to admit), I caught her making noises of pain. I don't think most folks would notice, since it was just a little catch in her breath. But to me, it was a mirror of the noises I make daily that mean I hurt, but I'm not intending on making a big deal about it. Usually such noises are involuntary. I asked her if she was hurting, and she said no, she was just stiff. Ha. I know better. I replied, "Yes, but stiffness hurts, doesn't it?" She gave me a rueful smile and admitted that yes, it does. She's also unsteady on her feet and clearly weak. Does that sound like remission to anyone else? Not to me. This only reinforces my doubt in remission.
I don't mean to dismiss anyone's experience otherwise, please let me be clear. This is merely my own feelings, thoughts, and experiences on the matter. I'm THRILLED for anyone who truly has gone into remission, and do honestly hope that maybe that will be me someday. It's just hard to believe in what seems so elusive and vague.
As to what qualifies as flares, I also find that confusing. Sometimes folks seem to define it as an extended period of time in which their symptoms are prominent. Others define it as brief periods when their usual unpleasant symptoms get significantly worse, then fade back to 'normal'. I asked my rheumy about how I'm supposed to define it, and he merely shrugged and said to define it however it was for me. I've settled for the latter sort, as my general symptoms seem to only be getting slowly but steadily worse over time, when looked at as a whole. During such wide periods of time, though, I definitely have times when things get sharply worse, then go back to what they usually are. So apparently, flare is whatever you choose to call it, heh.
Sorry for the rambly post. I've been mulling over this myself for some time, and it felt good to express it. Chasity, I wish you the best for diagnosis and encourage you to listen to your body, like the others have said. Only you know your pain, and don't EVER let anyone tell you that it can't be that bad, or that you are making more of it than it really is. That's utter nonsense. Don't let them in your head. Trust yourself. The only person who can really know how you feel is YOU. ::lots of hugs!::