Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 Hi, Sue, and welcome. Well, it is common that your symptoms seem to be UNCOMMON. In fact, the most common thing about Lupus is that it is like change. The only sure thing about change is that IT WILL CHANGE. We have all been there, done that, when it comes to getting a dx, and when it comes to understanding our symptoms. One of the reasons that this disease is so hard to diagnose and to treat is that it presents uniquely in each patient. No two patients will have exactly the same combination of symptoms at any given time. Oh, sure, we may eventually have similar things happen like sun sensitivity, fevers, joint pain, kidney involvement, or lungs or heart, or brain, or all of the above, but it is rare when it happens in the same way to any two patients. We are truly what my docs call a Medical Enigma. To top all of that off, we also develop sudden and often severe allergic reactions to things that have never bothered us in our lives before. For instance, I cleaned the bathtub with a foaming cleanser that we had used for years. Next morning, my eyes were plastered shut with sharp, crystals that took hours to flush away. And, the odor of that cleanser was in every one of them. Like aliens had landed in my eyes. Very weird. So, on another subject, tell us about yourself. Where do you hail from? Have a family? Interests, hobbies, fears, complaints, laughs, ????? Please feel free to jump into any conversation going on the board. We welcome participation. I live in No. California, about 50 miles from San Francisco. I am the adoptive, single (formerly working) mother of four special needs kids, grandmother of two, now, and was 55 in March. I was dx'd with SLE, RA, Sjogren's, Anemia, chronic Lyme's, Myofibrositis, non-insulin dependent Diabetes, and now heart and lung complications are suspected and being tested up the kazoo. LOL I was dx'd with the list above between the ages of 30 and 45, mostly, but symptoms really began when I was ten. So, it's not true that Lupus is quickly fatal, is it? I am living proof, as are many of our members. In fact, 25 years ago, I was told by a Rheumatologist that I would be in a wheelchair in ten years, and here I am, still on my feet. A bit unsteady sometimes, and slow, but still walking. I am nothing if not stubborn. LOL We are glad to have you, although sorry it is Lupus which brings us together. Please keep writing as it really helps us to get through some difficult days to be able to share our pain, humor, fears, frustrations, and to whine (We offer cheese with that.) when necessary. Hugs, MM aka: Mike, one of the moderators Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 Hi!! My name is Sue and I just found out (about 3 months ago) that I have Lupus...Mixed Connective Tissue Disease. I also have Fm,Osteo Arthritis,Neuropathy (that suddenly appeared in legs and feet about 4 years ago..I am not diabetic and they say I have it because of my thyroid problem?)and degenerative disk disease in disk in my back. A few other non-pain related things too. I have been reading about what I have..trying to understand all I can. The articles are vague sometimes or over whelmingly graphic...either way..I need to talk to those that really know what I am going through...I have mutiple symptoms as is common in Mixed Connective Tissue disease.. (I know I am not suffering as much as many of you.) I have been getting a rash on my one arm whenever I get too stressed physically by doing too much. No rashes on my face though...is that common? I hope to get to know you all and hope I can help you too! Love from----->Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 Hi Sue, and welcome! We are happy to have you! You have come to the right place for support and info. I don't know alot about lupus but there are many people here with tons of information a C I have been getting a rash on my one arm whenever I get too stressed physically by doing too much. No rashes on my face though...is that common? I hope to get to know you all and hope I can help you too! Love from----->Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Sue, Most days I feel really tired. I wake up exhausted. The arthritis is bad in my feet and ankles but my doctor is not able to prescribe anything for it because the arthritis medicine will effect my kidneys and I'm undergoing chemotherapy for that. I was diagnosed with MCTD in '93. I was later on diagnosed with SLE in '02. I'll be 22 in a couple of days so I've dealt with Lupus almost half my life. I didn't notice any difference when there was a change in diagnosis. I was just glad to know that there was a reason why I'd be so tired and achy. -. Re: Hi! I'm a new Lupie Hi ! Thank-you for writing! I have not met many who even heard of MCTD...it snice to meet some of the family! How do you feel most days? I notice my hands and hips really bother me and this horrible all over achy sick feeling sometimes. How long have you had it?? Did you notice a difference when it went into SLE? Sorry for all the questions! You have already helped me though..just knowing you are there!! Love from------->Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Gosh you are so young to be dealing with that. I know that tired feeling all too well. I always feel like I don't have enough energy and it DOES make me feel guilty. My family will want to go on a bike ride and I won't feel like it at all, but then I make myself go. I was working out today at the gym and my wrists, elbows and knees were hurting. I was so mad. I just wanted to exercise and feel good. ( Tonight I have some kind of cramps in my stomach. I thought maybe I was going to start my period, but it shouldn't be that since I am still breastfeeding my baby. Sometimes I just really want to feel normal without any complaints. *sigh* I'll be 22 in a couple of days so I've dealt with Lupus almost half my life. -. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Gosh you are so young to be dealing with that. I know that tired feeling all too well. I always feel like I don't have enough energy and it DOES make me feel guilty. My family will want to go on a bike ride and I won't feel like it at all, but then I make myself go. I was working out today at the gym and my wrists, elbows and knees were hurting. I was so mad. I just wanted to exercise and feel good. ( Tonight I have some kind of cramps in my stomach. I thought maybe I was going to start my period, but it shouldn't be that since I am still breastfeeding my baby. Sometimes I just really want to feel normal without any complaints. *sigh* I'll be 22 in a couple of days so I've dealt with Lupus almost half my life. -. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Gosh you are so young to be dealing with that. I know that tired feeling all too well. I always feel like I don't have enough energy and it DOES make me feel guilty. My family will want to go on a bike ride and I won't feel like it at all, but then I make myself go. I was working out today at the gym and my wrists, elbows and knees were hurting. I was so mad. I just wanted to exercise and feel good. ( Tonight I have some kind of cramps in my stomach. I thought maybe I was going to start my period, but it shouldn't be that since I am still breastfeeding my baby. Sometimes I just really want to feel normal without any complaints. *sigh* I'll be 22 in a couple of days so I've dealt with Lupus almost half my life. -. Quote Link to comment Share on other sites More sharing options...
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