View Full Version : Yesterday was a Bad, Bad day :(
12-16-2006, 06:23 AM
I had a really bad day yesterday. On Thursday night I went to bed with a headache and woke up with a migrain on Friday morning. I took some meds and pushed myself to go to work. I should have never done that. My headache did not completely go away with the meds (just took the edge off), I felt feverish with no fever, I felt tired and just like poo. My brain felt like mush, I couldn't hardley do my work. I have a lot of days where I can barley do my work because I have suddenly become "stupid" in the last couple of months, but this was worse. I felt so bad that I came close to turning in my notice to my work. I just felt like "I can't do this anymore". I know that I can't do that right now, so I didn't. I was alos seeing little black floaters in my vision. I called my Rhuemy so I could talk to him about the way I was feeling. He said "It sounds like you need to talk to your Nuerologist about this. he is a good doctor. Sorry, I wish I could help you more." That was it. I was so disappointed. I have built more of a relationship with my Rhuemy, I have only seen the neurologist once. Anyway, that got me thinking, maybe I should try a get a refferal to the Lupus Clinic in Birmingham. That is about 1 and a half hours away, but that's all they deal with, Lupus. I didn't try before because I like my Rhuemy and did not want to hurt his feelings. I mean he is the one that was thourough and found my Lupus.
12-16-2006, 09:55 AM
Hi, Jamie - sorry you are feeling so badly. I went to the group at UAB because my older brother lives just outside Birmingham and wanted me to get a second opinion about my lupus - he thought the folks at Birmingham might be better than my rheumatologist in Kentucky. Truthfully, it wasn't that helpful for me - I had to wait for weeks to get the appointment. then they insisted on re-running every single test even though I had the results fron my own doctor, they said they only trusted their own labs. It cost several hundred dollars to have all the labs and other tests re-done, and in the end, all that happened was they sent a one paragraph letter to my doctor agreeing with his diagnosis and treatment. They didn't offer anything new. If you are really unhappy with your rheumie, it might be a good option, but having to drive an hour and a half to get to your doctor would be stressful just by itself.
Do you mind my asking where you live in Alabama? I grew up in Alabama, and still have a brother and sister and a lot of other relatives who live down there. I miss the weather and the lakes, but definitely not the fire ants or the kudzu (LOL).
The problems you are having with thinking and concentrating are really common with lupus - doctors call it "cognitive dysfunction" - most people who have it call it "brain fog". Doctors don't really know what causes it - there are a lot of different theories - and that makes it hard to treat. The good news is that it is not a progressive problem - usually it doesn't get any worse, so it's not like Alzheimers where you totally lose function. Sometimes doctors can find a definite problem that they can treat, more often they just hope that the brain fog improves as the lupus meds kick in. Plaquenil can take a long time before you really feel any benefit. A lot of lupus patients have trouble sleeping and this can make the fatigue and brain fog worse. So getting plenty of rest and eating a healthy diet are important. There are medications to help fatigue and improve concentration - if things don't improve, you might talk to your doctor about them. But don't feel like you're going crazy - it's not in your head, it's the lupus. You are not alone in this, a lot of us depend on post-it notes to get through the day. :)
12-16-2006, 12:17 PM
Thanks for the response. I live in Athens, AL. It is about 25 miles or so from Huntsville.Where in AL did you use to live?
12-16-2006, 01:04 PM
I used to know Athens fairly well - it's a really pretty town. I was actually born in Marion Co., TN just across the Alabama/TN state line. My folks were living in Alabama at the time, but the hospital was in Tennessee. One of those weird things that happens when you live close to a state line. We moved down past Birmingham when I was two - fairly close to Tuscaloosa but not in town. My nephew is with the Huntsville Police Department, so we go through Athens when we visit them. We've also got other family scattered all over Alabama. I don't get down there as often I would like - I-65 isn't too bad, but my older sister still lives in Jackson County in the mountains, whch means driving I-24 and crossing MontEagle to get there. I just don't like being on the mountain roads anymore. But I still miss living there.
12-16-2006, 04:14 PM
It's frustrating when you contact one doctor, only to be passed off to another. But, I'm learning that sometimes it's the right thing to do. I've been working so closely with my rheumatologist, that I automatically contact her for everything. Sometimes she's not the right resource for that problem and she has me contact my PCP, neurologist, whatever. If you like your rheumatologist, and he's been responsive to your needs, maybe going elsewhere isn't the right plan. However, I'm a big fan of second opinions, and worrying about hurting your docs feelings really isn't key here. I've learned from others on this forum that finding a doctor who listens to you is not always easy. Seems to me that the decision to stay with a doctor or find another should be based on the care you've received, and not on loyalty. Good luck, Jaime.