Lupus Ontario Working together to conquer lupus

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Patient in Ontario writes.... I am absolutely thrilled to have found this website and more importantly this e-mail site of Hamilton. I am twenty-four years old and in the midst of my first 'flare-up' of Lupus (five weeks as of tomorrow) and just want it to be over. I am an elite athlete and find my self aching everytime I take a twenty minute walk around the block. The pain is intolerable at times, and frightens me, as I have been to the hospital three times in the last month. First, I thought I was having stroke (due to facial parastitis) and then my body went into shock. I am being treated by health services on campus, but my doctor seems boggled by my illness. I have seen a neurologist and waiting to see an immunologist, and rheumatologist. At first they thought it was MS (still considering it), but my anti-Ds DNA antiautobodies came back at 88.8. From my understanding, this is the active stage of the disease, but what does this exactly mean and will the pain ever stop. I am a runner and tri-athalete and feel like I am losing half my identity. The fatigue only set in a couple of days ago, up until this point I never really felt super exhausted. I was put on arithrotec, but went off a few days ago and seem to be doing a little bit better and just taking tylenol 2's when I can no longer tolerate the pain. The pain is deep in my bones, not necessarily in the joints, but sometimes there as well. Do you have any suggestions as to how to relieve some of the pain, or what I should change in my diet? I lost about eight pounds in five days, as I had no appetite but seem to be putting the weight back on slowly. Thanks so much for reading this e-mail and any help or advice would be greatly appreciated, as I am getting really scared and depressed.

Jan writes from Tennessee... I would like to know if lupus MAY have anything to do with me having mood swings? My husband and my son say I am moody now a days. I have been diagnosed with lupus for about 6 or 7 years now. I am only 40 years old and veryone I talk too say it's probably something with my lupus instead of menapause at this age bracket. I have an appointment with my rheumatologist in Nashville again next week. That is an hour and half drive away. Sometimes I think of questions later after my appointment is over and then I feel lost until 3 months later when I go to her again. My local family doctor sees me in between [specialist] appointments but he hardly knows anything at all about lupus and raynauds, which I also have. I am presently taking and have been for a long while, plaquinil, prednisone, lotensin (for blood pressure), tagament (for heartburn), amtriptiline for sleeping problems, and for several months now I have been taking methotrexate on a weekly basis, and have slowly had it increased little by little. It is hard for me to understand things about lupus let alone for me to expect my family to understand anything or to even understand my "moods" and my "tired and lazy" spells, and my being slow about getting up and around in the morning times. I guess my "mood changes" are my biggest thing I am trying to deal with at the present time. This computer and internet is all new stuff to me so I am trying to learn to use this at home when I feel up to it. But it helps just to read about or know that someone else sorta knows what I am dealing with. It was really nice to get an immediate response to my email. Thank you.

Another lupus patient writes... It is a hard adjustment going from an active Police Officer (37 yrs. old) to being limited on what I can do. I don't like being restricted! It's not my personality! I am also very used to being in control and being independent. Now I find myself relying on my family to do little things like cleaning my house. I have also found that some days I feel okay so I do things then I am suddenly worn out and aching. Is this normal for my disease? The depression is what is making me most troubled. In my career there is no room for this. Is there anything out there that will help? Does working out help? Does diet help? And why am I getting everything that comes along? My doctor has me taking Paxil, Plaquenil, Vioxx, Vicodin, and sometimes Prednisone. I also have HBP and take Prinivil for that. He did have me taking Sonoma to sleep but I started hallucinating so I no longer take that. My sleep is very disruptive and I am constantly fatigued. I realize this is a slow process but Doctor's in my area are not always the best. I am from the central Valley (between Fresno and Bakersfield, Ca.) in a predominantly agricultural area. I am probably 5 hours from SanFranciso and 4 hours from Los Angeles. Is Stanford Medical Clinic a good place to treat Lupus or UCLA I have heard about both. I am willing to go anywhere that my insurance will cover. Maybe you know of a Lupus foundation in this area. If so let me know. Thanks for sharing your story with me. At least I have a sense of hope now. Becky Home