New Lupus Patient -- questions, questions..................

Carol, thanks so much for the welcome! Sorry to hear that you are having a rough night -- I can certainly sympathize..........I appreciate the quick note --this site has put a smile on my face quite a few times today -- I can certainly get used to that!!!

Be good to yourself~ Tammy

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Tammy B.

Tammy, I recommend reading THE LUPUS BOOK by Dr. Wallance. It can be a big help. You got lucky in getting a dx as fast as 4 1/2 years although I know that feels like forever when you are dealing with the pain, fatigue, and absolute terror associated with having no clue what is wrong. I waited over a decade between when my symptoms began and my dx. I have a negative ANA but when that came up negative no one was willing to look further. I finally found someone willing to help. We think the reason I am in the condition I am is because it took so long for dx and tx. I would likely be doing much better if I had been txed sooner. As it is I developed other problems and complications. I wish you the best of luck and hope that many more who understand this disease well will come by and give you more information. Right now I am in a flare and dealing with having court over my SSI on Monday otherwise I might be more help. I basically dropped off the face of the earth for several months while I tried to just hold on and keep going. I finally found the energy to come to the computer again and it has been so much help.   With that thought I need to stress the importance of support. You need to have people who understand what you are going through. I suggest you stick with here and also look for a local in person support group. Also I would have your husband/significant other talk with someone who understands lupus well and can explain how bad it can get and how good it can be and that it is unpredictable. Then I would sit down your oldest child because she is old enough to notice and to understand. There are resources to help. She is going to create horrible ideas if you don't give her the truth worse if she hears lupus she might go and get old information back when it was a death sentance. I would consider telling your middle child at the same time. Your youngest is simply too young now but needs to know you are not completely well. The medications are kind of a clue off. You will see from my signature the progression my disease and medication took. My case is unusual. My family has heavy tendancy toward autoimmune disease and a lot of those who get them die of kidney failure because they don't get dxed until it is way too late. I am lucky my kidneys seem okay but I will seen a kidney specialist next month just to be sure at my rheumy's insistance. I suggest you get really good terms with your pharmacist- have a 24 hour one- and your rheumy. Find a good pcp too who is willing to work with your rheumy I am still hunting for that. I also advise that you keep a list of medication, allergies, and diagnosies in your computer for easy changes and put the update date on it. Print several copies. 1 goes in the glovebox. 1 in your purse or wallet. 1 to whomever you trust to make medical decisions if you become unable- make some legal document so they can do this no matter what and make clear your wishes in this document so no legal battle can be an issue later- and 1 to each doctor on every single visit. It is the fastest way to update them on changes. You need to have your allergies tested because if you are having allergy problems it can make your autoimmune issues worse- find an allergist and get tested and then do what they recommend you need your allergies under control BUT NO ALLERGY SHOTS EVER!!!! Remember that allergy shots irritate the immune system, so no matter what the allergist says you can never have allergy shots- I got this from my rheumy and an immunologist. I wish you much luck. Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005 Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco , Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD

Hi Tammy. I can see you have gotten some very warm welcomes and that you can already tell what a great and supportive group of people we have here. As you can see, a lot of us have gone through similar things. I'm a 40 year old mother of two (9 and 5) and went for almost 3 years of diagnosis limbo before I found a rheumy who would really help me. It is furstrating to wait so long to get a diagnosis and have a name for what is wrong. Just don't give up. The good thing is that you have a rheumy who is willing to treat your symptoms even if you hasn't given a name to your illness yet. I'm really glad you joined us and look forward to hearing more from you. Take care Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg ; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums

Hippimom2 and Emily B.~ I just love coming to my computer and sitting down to see a new message!!! Thanks for input -- the similarity in our stories are freaky! I was interested in seeing the meds that you are on, hippimom2. I was on neurontin also for about 1 1/2 yrs. it did help with the pain and tingling, but, it made me so tired that I only took it at night so that I could get some sleep. I also had mono in 1986 and another bout with a "mono-like" virus in 2000 -- interesting! Also interesting to me is the fact that autoimmune issues are cropping up in my family -- my mother has been battling an illness that they thought was polymyalgia, was on steriods for over 1 1/2 yrs. and as a result, her system is all messed up. She still has pain, and they know that something is going on since her sed rate is always elevatede. My oldest brother has had ulcerative colitis since he was about 35 yrs. old, and I have a sister (48 yrs.) who has been having health issues centering around a thyroid. disorder. So, it is in my family, it just has a habit of showing up at mid-life..............talk about a mid-life crisis!!!!! Best of luck, Emily, starting you new job on Monday. Keep your head up and keep pressing on -- you will eventually find someone to listen to you and take you seriously!!!

Best health~ Tammy

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dx: fibromyalgia 2006; uctd/probable lupus 2007; hypothyroidism