Hey y'all. Im Lauren, I am 23 years old. I was diagnosed when I was 18 in 2010. The day I found out, I didn't realize what it was and what it could do. But it freaked me out ( Never a good thing, when one doctor leaves the room and has 3 more doctors come in the room with him at the same time. ) Very scary time. Well at the time I only had the skin rash and lesions. They did test and my organs and everything where fine. Now I feel like I am even more scared. This year has been horrible my worst year to date. I didn't realize how lucky I was back in 2010 and didn't have all these others symptoms.
So flare up started happening around December of last year. I wasn't really stressed then ( one of my main triggers) So after the flare up happened I was okay .. it will go away for another 5 years. HAHAHA was I wrong. I don't think in the year of 2015 I have been in remission once. I just keep getting worse. Sleepy all the time, joint pains, Kidney issues, brain fog, and I am lucky to remember something you told me 4 hours ago... and on my MIGRAINES!!!! Ive never had Migraines until the past 3 months. No pain pill on this earth gets ride of it. I have been given Morphin, Dalothin, ( Both not spelled correctly.. don't hold me at gun point) and everything else you can think of. Its horrible. At first I didn't think anything of all my symptoms until I went to the ER this past weekend cause I couldn't deal with the pain. Then it was like a lightbulb in my head. LUPUS. Maybe just Maybe my lupus has progressed. I went to my doctor and asked if maybe this could be why I have been so ill with no reason this year. It was like a lightbulb went off in his head also.
Now the part I HATE is now I am left to find a RA on my own ( I know butt move on my doctor.. but today was his last day, and as he put it, its not his problem anymore.. use GOOGLE). I know look one up right.. I am just scared they are gonna call me crazy. Cause what if all this is just in my mind and non of this is really happening or have anything to do with Lupus. Am I crazy or is this really happening? Is my lupus progressing?
Not sure if this has anything to do with lupus but I have been on my period for 8 almost 9 months!!!
MRI in the works. Anyone know any good RA's in West GA???
Hey Lauren, welcome to the community!! Firstly...YOU ARE NOT CRAZY! lol. I just don't want you thinking that :) I can relate to you on the scary-ness level of being diagnosed..I'm 24 and was diagnosed when I was 14 after having experienced ignored symptoms 2 years before leading up to that point. I was at Yale Hospital, which is a learning school too clearly, so I had many students coming in on top of doctors to keep re-examining me since I was okay with it and that they hadn't seen too many people as young as me who was diagnosed with Lupus and had blood clots. It is pretty nerve-wracking. Unfortunately, Lupus is pretty unpredictable and can be no matter how much we think we have the contributing factors to our flares under-control. And you're definitely not crazy...just because new symptoms aren't the same we initially experience when being diagnosed, it does come across as scary and overwhelming. But when searching for a Rheumy, they shouldn't think so either. I can't help much because I'm not from GA, but don't settle and make sure you find a doctor your comfortable with! If he/she even tries calling you crazy, then they're not the one for you. Also, have you been to the gynocologist lately? They should be able to give you some ideas regarding your period. I had flow issues (that sounds gross, but you get the point.lol) that I think was due to being on blood thinners, but it got to the point where it seemed like I almost always had my period and with such a heavy flow. It was exhausting and made me upset so I made the decision to try an IUD which has helped tremendously and my period seems more "normal" now than before.
Having your period for 8 or 9 months is something you need to check out with a dr. Not only what is causing it but it can also cause problems because of bleeding so long. I had a similiar problem due to fibroid tumors. I understand how you might feel it is in your mind and thinking you might be crazy. Your not, this is real. I felt the exact same way when they were trying to figure out what was wrong with me. My symptoms are all neurological and inflammation was not showing in my bloodwork. My symptoms were getting worse and they were not diagnosing me. At one point I told my husband he was going to have to commit me. I had a lumbar puncture and that showed all the inflammation and I was actually relieved to get back bad test results. Lupus does constantly change it's face, so yes your lupus could be changing. Take the time and find a good rheumy, it will make a huge difference but get to a gynecologist right away. Don't stress you'll be okay.
Some of your symptoms are ones I deal with- headaches, memory problems, etc. My dr says they’re caused by my secondary disease antiphospholipid antibody syndrome. When they put me on blood thinners for it, the headaches got a lot better. I dunno if it could be the same thing, but if it is, they can do a simple blood test
You’re definitely not crazy though. I thought I was crazy too, so I understand the feeling… the nervous system involvement seems to be one that not a lot of drs think about
Yes, I understand where you are coming from. So many people told me my pain was in my head, I was a hypochondriac, crazy, with eye rolls. My memory is lost, and I can't think of words that were on the top of my head. I've went into my dr. with five days of level 10 pain just to be told its my fibro. and deal with it. Now knowing it was probably a flare up. It hurts my feelings to think back but I have to realize they don't get it and try to move on. Stress triggers headaches for me, and being tired but not able to sleep, leaving me grumpy. But bottom line, you are not crazy. Sending positive vibes.:)