I'm still the same...well, maybe worse. My pain gets a little better with my Ultram but NOT as good as it could be. My rheumy refuses to give me anything stronger! O well, I'll just keep praying, hoping, & having faith.

Hi Jeannie, First, I have been diagnosed with rheumotoid (sp) arthritis, lupus and fibromyogia (sp)...the doctors could never pinpoint the real culprit... After 13 years, my blood work finally calmed down and actually shows the same issues each time..the latest verdict, lupus and fibro. So, my point....go back for the tests...get copies of EVERYTHING!!!! You may need to change doctors at some point and it will come in very handy... Also, lupus and Rhem arth are NOT death sentences these days...as my rhemotologist told me....testing is so good these days that you will not die from lupus.....yes some folks do, but testiing is so much better these days...they can figure out so much earlier if you are having organ issues... There are WAY worse conditions than lupus or RA... Also, I did not have good luck with about the first 7-9 meds they put me on...now I am on one that works wonders for me...too 3 years to find the right med for me....but it was worth it...I have my entire life ahead of me...yes, I had serious issues for 13 years, but 13 years out of my entire life is nothing. Also, with an auto-immune issue...it is essential that you get good rest...I have totally reworked my life to include the really important (to me) stuff and stop doing other stuff..this did not happen overnight but I am so much happier these days. The more rest I get, the happier (mentally) I am, the less flare-ups I get... The mind is easily tricked into being in a good mood...I have a piece of advice hanging on my office wall.... Even when I have pains, I don't have to be one.... I try to remember this everyday....it works for me. Best wishes to you... RAE

Hi Marie, Thank you for your e-mail. All l can say is it take extra time for people with Lupus. I am just taking for granted you have SLE Lupus. And becasue this is such a difficult disease on it's own alone, we have double jeporady to try and bounce back from any type of surgery. I have not had surgery yet, l have mine this Thursday( 7th), so l really have no idea how l am going to respond, to be able to tell you how l feel. BUT, l have discoid Lupus and not SLE, l truly believe that this makes a real big difference. I also have Fibromyalgia, and some times l feel like l did die and had gone to hell. If you are only 10 days since u have had your surgery, u need to relax and give yourself extra time and not make such demands upon yourself. You have just gone through a huge operation, and you already have a debilating and challenging disease. Take the time you need sweetie, to recoop your energy, you are worth every moment of time that you require. Please tell what type of surgery you had and was it open or lap? What is bothering the most? Is it the exhaustion or pain? I may not be able to get back to you right away, as l am leaving Tuesday (5th) to leave for the USA for my surgery. I will look you up when l get back to my hotel room and see if you have responded. Take care sweetie, you will get through this, put all your faith in your higher power or what ever faith you have to keep you going. Try and think positive, god l know how hard it is, but if you have to make it through your time by taking 1 minute at a time, this is what you need to do. I hope you are feelin much better soon, and may god bless you Marie and get you better. Talk to you soon. Hugs Sharon M Canada

Well I am sure a lot has changed since this post...and I hope for the better! I am battling chronic anemia as well.. threefold in nature.... lupus, iron deficiency, and a big ol fibroid in this old uterus of mine... yes, it can get worse! In terms of the B12 deficiency... yes, it is a pitfall of the surgery, particularly the more distal the bypass. However, my surgeon put me on sublingual B12 and folic acid almost from the start... and perhaps that is the thing that has kept me out of more trouble than I am already in... you might want to ask about it... Trader Joes has a version out here... under the tongue in the am ... and over and done with. No shots needed. (can't get the B12 in tablets... destroyed by the stomach acids). Good luck ... hope things go well for you... and take it from me, don't put yourself under any unneeded stress.... most dx of lupus are preceeded by some crisis event or stress.... hang in there B

Lupus often coinsides with fibromyalgia. You may have both, I do. If you are testing a posititive ANA what is your titer(if you are not sure what it is, just ask him a titer is something like a ratio of rotations for the cells in the blood to seperate while being tested.)? When you begin to flare, they typically go up. The higher the titer, the worse the flare...at least for me. It sounds to me like you need to seek a second, third or even fourth opinion. I haven't had a chance to check you profile but very often, Drs have a pre judged diagnosis prior to even meeting you. Lu*****mptoms generally begin to appear later in life 30-50. Personally I was diagnosed at 23y/o. It takes a long time for them to diagnose because it is different for everyone. Unfortunately I had kidney involvement (nephritis) which is what prompted them to pursue additional testing. It took about two years before they nailed it onto my chart as "LUPUS" AS for the pain, Daily I am on Plaquenil, and ketoprophin; prednisone while in a flare. Methotrexate is a "heavy hitter" used when things are really bad and organs are being affected. I have used that as well. If he wants to keep your diagnosis as only fibromyalgia, he might want to try amitriptaliyne. THis ironically is an antidepressent but taken at bedtime it helps with the burning pain and general achy feeling that you have. THe muscles and joints hurting you need to be aleviated. This particular regamin has helped me. I wish you the best, I know this is a tough and painful journey, I wish I could help you more. Just keep you chin up and get a new doc! Good Luck!!