Lupus Support Group

I have a question for you veteran Lupies. I had my second appt with my Rheumatologist this week and it was very helpful. She answered all of my questions and was again very nice, but I did get a weird feeling. I mentioned that I am still exhausted all the time so she put me back on the super doses of Vitamin D, but she kept emphasizing that I have MILD LUPUS. MILD LUPUS. She just just get throwing it in there, MILD LUPUS.

I have never exagerrated my symptoms, contrary to popular belief, so why would she keep repeating this. They said that my kidneys are pretty ok, so I know that I'm not like DYING, but I still feel like crap.

I've looked up the differences, and it seems like if you don't have major kidney, lung or heart issues, its mild. Does that mean that she isn't going to believe that I don't feel well? We talked about me going back to school, but I always worked full time until the headaches and have tried to go back to school and it just didn't work out well.

I get constant rashes and skin issues (not as bad as some but its pretty constant) and feel exhausted after I do anything. For example, I went on a romantic getaway 2 weeks ago and I'm still recouperating. She's not the only doctor that asks me about returning to work, granted I basically diagnosed myself and had to literally demand the tests/ rheumy appt. I only see her once every 3 months, how do I get her to understand that just because I don't have major organ damage doesn't mean that I'm good to go yet?

Sometimes lupies have other autoimmune diseases secondary to the lupus. When the lupus is quiescent, the other AI is active. May be you need a second rheumatology opinion. You feel sick, that's the reason you go and see the doctors to ask for treatment. Just because they don't know how to do their job, you don't have to suffer. It's a free country, you are entitled to seek the best and most experienced in the field to provide you the treatment you deserve, rather than acquiesce to the ignorance of some.

I agree with Looopie that maybe you should seek a second opinion from another Rheumatologist. You need to have a doctor that is willing to sit and actually listen to you......we all need that....please let us know what you decide to do.....take care

Eva

Journey I totally understand where you're coming from. My rheumy wont even say I have SLE. They call it "UCTD" or Undifferentiated Connective Tissue Disorder...even though I def have enough criteria for the lupus diagnosis. Ive been on plaquenil for 2 yrs and they are just now suggesting the possibility of other meds(pred & chemo's) etc...but suggesting isn't exactly following through is it? I too have the same problems as you do with the severe photosensitivity to sun and lights. I've also had CNS symptoms and symptoms of myositis they haven't wanted to pay too much attention to. I am also in school and just finishing up a Phlebotomy course..wanting to look for a job but it does scare me about the exposure. I'm already having issues due to the sun and it's not even hot out yet. Unfortunately I see the "best rheumatology clinic available" which is already 3 1/2 hrs away. All the locals always said I was fine when I knew I wasn't. So I too am at a loss. I'm not sure how I can help but I just wanted you to know you are not alone and I'm here if you'd like to chat. Take care and hope today is a good one! -Lupie Britt aka LadyBug

I completely understand where you are coming from Journey I am having the same issue. The Rhumie has said the same thing too me in the past. He would tell me " You have the annoying type of Lupus." Every time he would say that it would make me mad. Not because I wanted to be sicker than I was. He was not listening. He ended up missing the clues I was throwing him about the other issues I was having. So I switched Doctors. My new Rhumie diagnosed me with APS at first sight.She listens, responds and explains things to me. I am still in alot of pain but we are working together to take care of all of my concerns and issues. I am admittedly frustrated with both of these diseases and being in pain all the time. I had to quit my job that I have worked 15 years to excel at and just when I reached the top Lupus took it away.But I knew I had the right Doc when she said she would help me and support my decision what ever I decided. She also gave me advice and warning about how my job would affect my health. She is also willing to help with my fertility issues. So my one piece of advice Journey is make sure that you trust your Doc with your life!!! Because one day it may come down to it. That is why I switched Docs I did not trust that the other doc could save my life and scared me.

Journey, I also agree with Loopie. Get another opinion. It doesn't really matter if you have a mild or severe form. I think their are many symptoms that in themselves can make it impossible to do your job effectively. The chronic fatige and pain for example. I think you should see someone who may be a little more understanding of your concerns. My rheumy is very "chipper" and when I complain of things he is like "oh no" "well let's try to fix this" and sometimes I feel like I am being cared for by Doogie Howser, MD. The fact is he is very reputable took one look at me and my labs and said Lupus. He was my second opinion the first thought MCTD-undifferentiated and wouldn't commit to anything. So I am willing at this point to overlook his goofy personality because I know that he knows his stuff. So definitely look for another opinion.

April

I have gone through the same thing. I feel terrible on a daily basis! I really emphasized this at all my appointments because for the past year and a half I have been trying to get on SSD. That is a good motivator to keep you sharing everything at appointments. I did just recently win on my 3rd appeal, so they finally believe I have disabling Lupus. It is a good feeling to know they believe it! My doc goes back and forth on blaming more on fibromyalgia one appt then Lupus the next. Go figure?! I make a phone call to my rheumy every time I get a new symptom or badly swollen joint, to make sure it is documented. It is like you have to bug them enough for them to remember you even though you aren't immediately dying!! I have felt like I should have some organ involvement to really be diagnosed with Lupus. Now I know that is just crap. Just having Lupus is enough to make anyone miserable when in a flare!! It takes a lot to get through to our doctors! Keep on trying though!

Take care,

Amy

Boy... do I like this post!!! I think I might print it for my next appointment and just leave it on her desk when I leave

Such a wonderful idea Hakuro!!! I'm with ya on that one! lol -Lupie Britt aka LadyBug

I agree, great responses. It just frustrates me because its not always possible to get a second opinion and in my case, it seems like they know that. I think I'm just going to have to keep bugging them and letting them know that I'm just not feeling better.