I was diagnosed with Lupus 12 years ago. I kept it a secret from almost everybody in my life. As a single mom with Lupus, I have faced some pretty huge hurdles alone. I didn't want to be a burden to the people I love. When my disease was active I would simply vanish from my friends lives when I needed them the most. When I heard Rob say in an interview that Her Diamonds was about his wifes fight with an autoimmune disease and then found out it was LUPUS, it changed my thinking. If they can talk about it, so can I. I started by sharing my story with strangers online and gradually worked up to telling friends. Saying it out loud still feels like I am summoning a demon, but it gets a little easier each time.

blujayne, don't be afraid to share...you are not summoning the demons...you are facing reality head-on and it will help you heal. In that, you will help others around you heal. I'm so glad you found strength through Rob & Marisol. I have Mixed Connective Tissue Disease - it is a mix of Rheumatoid Arthritis, Lupus & Scleroderma. I also have Fibromyalgia and Lyme. Because I have such overlapping issues, I talked more about the issues, and I found out how many there are out there suffering just like you and I - worried, scaried, not sure what direction to go in - they have symptoms with no answers, doctors that make them feel they are crazy, etc. It is in talking with each other that we draw our faith, and our strength, and help each other get through. Hang in there...my prayers are with you. Don't be afraid to share...we are here for each other! xxoo

I as well have an autoimmune I am being tested for lupus now, I am struggling with sjogrens, and fibromyalgia, nice to hear I am not alone

I suspect my symptoms are more like MCTD. I have a real mixed bag of issues including degenerative spinal artritis which I have had surgery for twice with two more on the horizon. Right now I am pretty sure am dealing with low platelets. I have purple spotted alien arms, but can't get my doctor concerned enough to see me until next Monday.In the meantime I feel so weak that it's me,my couch and the computer for outside contact. Perhaps I should try to bleed out my eyeballs to get the doctors attention. Some days. I just can't win for losing.

To everyone with autoimmune diseases, please know there are people who can help you. Not your medical doctor, because they generally think you're nuts-- I know, because I've been there. Autoimmune diseases are caused by heavy metal poisoning-- all of them. Thyroid problems , fibromyalgia, lupus, chronic fatigue, rheumatoid arthritis, prostate problems, etc. are all from metals. Please, if you are serious about getting well-- really well--find a holistic chiropractor, someone who will give you the simple and cheap test for heavy metals, or go to MaximizedLiving.com and find a chiropractor near you. Seriously, it will change your life. I just found out about Marisol's problem (after going to the Las Vegas concert-Yeah!!), so I had to sign up here just to let you know. You can be cured! If it were up to my medical doctors, I would have undergone radiation and had my thyroid removed at the age of 38. Instead, I am perfectly healthy and drug free.

What exactly is LUPUS? I am keeping up with the discussion boards and want to get more info on the fight to treat it

There are two types of Lupus. The first, a mild form is called Discoid Lupus. This generally just affects the skin. Usually shows up first on the face, then can spread over the body. If not treated properly this can cause terrible scarring. The second type is called Systemic Lupus Erythematosus (SLE) affects all of your bodily systems. It is a disease where the immune system basically turns on itself. Attacks all your organs, bones and connective tissues etc. First symptons are painful joints and muscles. Butterfly rash on the face, weight loss, depression, extreme fatigue. A flare up feels like your worst flu and times that by a 100. Unfortunately you may not exhibit all the symptoms at once. They can appear slowly one by one over time. You may not ever get all the symptoms, this is one major reason why it is so difficult to diagnose. It is treated with corticosteroids (prednisone), antimalaria drugs, antirejection drugs. The idea is to suppress the immune system and reduce inflammation in order to keep the lupus controlled. Unfortunately taking some of these medications has some severe side effects such as weight gain, eye problems, risk of infections. But let me tell you, the treatment far outways the side effects. Over time most of the side effects dissappear. I was diagnosed with SLE when I was 16 years old and that was 26 years ago. It is not a death sentence any longer. With the advances in medicine and other treatments, one can live a pretty normal life.

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Originally posted by BALWAG273207:
What exactly is LUPUS? I am keeping up with the discussion boards and want to get more info on the fight to treat it

Hi everyone... I am new to this sight. It is good to see that there are other people willing to talk about their issues. By doing this, it helps give a face to these types of diseases. What fools people is the fact that most of us look normal. Unless someone knows that you have one of the autoimmune diseases you would never know by looking at us. But we know inside, dealing with the pain, the uncertainty of how this disease is going to effect the rest of yours and your families lives. I include family because they are going to be your support system. You will need them and your friends to be understanding. The way I have dealt with Lupus is "it is what it is!" Can you change having this disease? No, but you can deal with it. The disease is a part of you, not all of you. You have the ability to give in to it or not to. Getting the right attitude will help determine how your disease is going to effect the rest of your life.

I am in the worst flare I have ever been in, triggered by suspected H1N1 flu. It is so hard to describe what it feels like when you get this sick. The scariest thing is when the dark thoughts creep in along with the depression. I have had nights during this flare when I really have wondered if I would see the sunrise again.My lungs are affected right now and it hurts to even breathe.I can only sleep an hour or so before I wake up feeling like I am drowning and I have to sit up or pace. On top of that, due to insurance changes, I have to see a new doctor and try to fill him in on everything. I have been to ER for IV fluids and pain meds. The only answer I have gotten at all is "these things are a process" Thats just a little scary to hear a doctor say. Thats what they say about dying. All of the answers you gave to what is Lupus have been great. I just haven't had the energy to write much. Thank you all for all of the encouraging responses.

Blujayne, just read your response. My heart goes out to you and to what you are feeling right now both physically and emotionally. My question to you is how are the doctors treating you for this flare up? What medications are you presently taking? Have you developed any form of lung disease due to the lupus? Are you being followed by a primary care physician or are you seeing a rheumatologist for your treatment? Having the right doctor can make all of the difference in the world. The doctor I see is one of the top ranked dr's in the country for autoimmune diseases with his specialty in Lupus. He is one of the head researchers in this disease. People travel from all over the country to see him. I do not know where you live, but my suggestion would be to have a rheumatologist affiliated with a teaching hospital. They are more aware of the latest treatments. I am here to help.. pretty experienced with this disease. I can pretty much answer any questions you may have if you want to ask. Keep your chin up! You are in my prayers.

I am establishing with a primary who seems to be with it, has ordered tons of tests and is following up on the ER visit which showed some very messed up bloodwork. Platelets were not low, but high. He seems to think the Lupus might have been a misdiagnosis, and that I may have RA which looks very similar and can cause the high platelets. Whatever IT is IT is also knocking out my kidneys according to the tests in the ER.I have lost 20 pounds this month so I got some pretty serious attention (Thank God) It is really weird to think for years you have one thing then your reality is shaken. I was just learning to say Lupus out loud. There is so much overlap with these autoimmune issues you just never know. I will have more results and an intial plan of action Thursday.

I would still advise that you get set up with a rheumatologist, most primary physicians are not trained to deal with these type of diseases. It wouldnt hurt to ask the doctor about seeing a specialist. If it is indeed RA (which by the way comes along with Lupus in most cases) the rheumatologists are specialized in RA and other autoimmune diseases. In regards to kidneys, have they found protein in your UA test? If you are, then this could be a contibuting factor to the weight loss, fatigue, soreness and overall exhaustion.. This is common in RA and Lupus as well.. There are so many different combinations of symptoms, this makes it hard to diagnose anything. Have the drs ran the anti-dna and anti-ana tests?

Protien and blood in urine. He is setting up an urgent appointment with a rhumatologist. Elevated liver enzymes too.I also have type 2 Diabetes which complicates things further, because the steroids increase blood sugar, which is alredy incresed because of AI issues so it needs to be treated aggresively before other stuff. All I know is I am sick and scared, but not feeling nearly as alone. Also all the tests have been done. Now comes the waiting. I will know early Thursday. Thank You.