View Full Version : just not sure

12-15-2008, 12:29 PM
Hello my name is Becky and for the past year I feel like i've lost complete control of my body. I finally went to the doctor for stomach aches and painful urination. They found protien in my urine and sent me to a urologist. After several tests over 6 months still no answer. He actually told me not to worry alot of people pass blood in the urine. Well after another 6 months of research and odd symptoms I finally asked for some blood tests. I will know next week if I have Lupus which I'm pretty sure I do. Here is a list of my symptoms: rash on my face and over my body, blood in my urine, severe stomach aches, pain in my lower back, severe dry eyes, sensitivity to light, frequent colds and sinus infections, blood clotting issues, enlarged spleen, reoccuring thrush in my mouth, sore throats, 15 pounds (yes pounds) of fluid in my legs and feet, and now joint pain. They put me on a water pill and didn't even ask where all this fluid is coming from. Just wondering if anyone else has similar symptoms. I believe I've had this almost 3 years and finally just got bad enough to push for tests. I don't understand why doctors don't run more testing earlier on. I had to practically beg for them to draw my blood! And they looked at me like I was crazy and told me to stop researching the internet I'll make myself sicker. Okay so I fake the blood in my urine and this itchy rash all over me. I just want to know that there are other people going through what I am. Just would like to hear from others about their experience getting diagnosed. I am 29 years old and have one child.

12-15-2008, 01:24 PM
Hi Becky,
Welcome to the site. My name is Kathy and I have SLE, Lupus. I have had it for about 45 years. I know how frustrating it is to get the doctors to listen to you. You need to see a good Rheumatologist who specializes in the field of Lupus. This is a rotten illness with no cure and it is hard to diagnose, because it mimics a lot of different diseases big time. It sounds like if you have it that you are having kidney involvment which can be very serious big time. I hope that you can get in to see a Rheumatologist. There will be others that come in here that have really good information. Please keep posting as we all are here for you and care for and about you.


12-15-2008, 01:37 PM
I have just been so frustrated and at first just accepted what they said. I know there is something wrong with me. And I want to know what. I'm scared that it is Lupus and almost more frightened that it isn't. Then I have to start all over. I notice most of my symptoms do sound similar to others on here so I'm sure I have some type of immune disorder. I know finding which one is the tricky part. I have been sketchy on details to my family because I don't want them to worry until I know for sure what I have. But it's hard to keep all this worry inside. So thank god for this site. At least you all know I'm not insane. My symptoms jump all over. I'll go days being fine and then get really sick out of no where. At first I tried to excuse the symptoms, get older, stress at home or work but they get worse and I don't feel like me anymore. I have a 5 year old and I find I have to push myself to play with her because I'm sore or tired. And I hate taking my cranky self out on my husband and kid. I'm sure once I know what it is I'll know what to do. I am open to all ideas and remedies that help, I know there isn't a cure but it can be managed. I may be jumping the gun since I don't have the test results back yet but deep down I'm sure that's what it is. Seeing posts from people that have lived like you for 45 years at least gives me hope that it isn't going to ruin my life. It may slow me down but I will fight!

12-15-2008, 02:08 PM
Does anyone else have the kidney problems? Would like to know if what I'm feeling in my back and abdomen are due to my kidneys and spleen! Also the foggy head, I get migranes alot but lately I've been forgetting things. My husband can tell me something and I'll forget it immediately. I have been feeling all these symptoms eveyday that is what promted the new dr. visit. Sick of being in pain and not knowing why. The hip and knee aches are the worst. The stomach pain comes and goes. And the burning in my back also comes and goes. The flushed face really irritates me and it seems to only happen at work or buildings. I've read it can be triggered by flouresent lights. I'm wondering if that's why I'm worse at work. But at least once a month I am so sick I just can't get out of bed and the low grade fever just comes and goes. I'll be feeling cold and take my temp and it's 100.1 but I don't feel sick.

12-15-2008, 02:14 PM
Hi Becky,

I was only diagnosed 1 month ago, and have been testing positive for lupus for over 10 years now. At first I was diagnosed with Fibromyalgie and Intersticial cysitis (destroyed bladder). They have now added SLE (lupus) with probable kidney involvement and possible neurological issues. This is the frustrating part, and you must be our own advocate.

I agree, it is crucial to find a good - no "great" rheumatologist who specializes in lupus. When you call the office, just ask the operator, or better yet, get in touch with your local lupus support group. They have great local info.

Good luck, lots of knowledge in this group....keep posting


12-15-2008, 03:48 PM
Hi Notsurerfh;
In disease, such as lupus, it is not uncommon for two events to both be true, yet not related. This means that each has a defined cause and that they are occurring together. However, they are in fact independent conditions. Lupus is an immune disease that can attack many internal organs and tissues. The classic parts of the skeleton that can be affected by the inflammation of lupus are the peripheral joints - the joints away from the spine, such as the small joints of the hands and feet, the wrists, knees, elbows, ankles, and shoulders. Lupus commonly causes arthritis in these joints. The spine is generally spared from the inflammation of lupus. Lupus can cause neck and back pain, however, because muscles can become inflamed by lupus. Furthermore, the muscle pain syndrome called fibromyalgia that can cause pain in these areas is commonly associated with lupus. Moreover, cortisone medications that are frequently needed for lupus can weaken the bones of the spine, leading to breakage (fractures) of vertebrae. Also, a rare complication of lupus that involves inflammation of the spinal cord (transverse myelitis) can be associated with back pain. So, if you do indeed have Lupus, it may be the cause of your back pain while, at the same time, you are having kidney issues.
Blood in the urine, foamy urine and edema in any part of the body are all symptoms of kidney disease. The most common kidney disorder with Lupus is Lupus Nephritis. Lupus nephritis does not cause back or abdinen pain. Lupus nephritis is an inflammation of the kidney caused by systemic lupus erythematosus (SLE). Lupus nephritis may cause weight gain, high blood pressure, dark urine, or swelling around the eyes, legs, fingers, etc.
Lupus nephritis (kidney disease) can be detected by finding abnormalities in the urine (such as an increase in the amount of protein) or the blood (such as a decrease in kidney function or elevated creatinine). If the disease is felt to be clinically significant, a renal biopsy (kidney biopsy) may be recommended.
Treatment depends on the symptoms and test results. Medicines called corticosteroids can decrease swelling and inflammation by suppressing the immune system. Additional immunosuppressive drugs related to cancer and drugs used to prevent rejection of organ transplants may also be used. In severe cases, your doctor may prescribe cyclophosphamide (Cytoxan, Neosar) or mycophenolate (CellCept). Newer experimental treatments include a drug called rituximab (Rituxan).
You may need one or more medicines to control your blood pressure.
You may need to limit protein, sodium, and potassium in your diet.

The symptoms of Lupus can include:
Joint swelling
Joint redness
Rash - commonly on the face but may occur on other areas. Often in the
characteristic "butterfly" distribution
Chest pain, sharp and stabbing
Sun sensitivity - fever may develop after exposure to sun or fluorescent lighting
rash may develop after exposure to sun or fluorescent lighting
fever may develop after exposure to sun or fluorescent lighting
rash may develop after exposure to sun or fluorescent lighting
Mouth ulcers
Neurologic changes - seizures
dementia or psychosis

It is imperative that you insist upon a knowledgeable rheumatologist. These doctors specialize in auto-immune disorders and are much more able to diagnose and prescribe treatment. You are right to stand up for yourself and be your own healthcare advocate. Continue to do so and continue to learn as much as you can about your body, your symptoms, possible causes and their treatments. The next time that a doctor tells you to stay away from the internet, tell him/her that you'd be glad to if they answered your questions, took you seriously, and made diligent efforts to find out what is causing your symptoms. Until they do that for you, you will continue to do it for yourself...that is your right!

I wish you the very best.
Peace and Blessings

12-16-2008, 08:53 AM
I am a little overwhelmed by the sincerity I have found on this site in only a few days. If doctors spent as much time caring about the patient as they do for the patient things may not go overlooked. My test results should be back by the end of the month. If I have an elevated ANA or any other warning flag I will contact a specialist. I am not sitting back waiting to get worse. Thank you again for all of the support and it is very reassuring to have others who have been there and are still fighting.

12-16-2008, 11:03 AM
Hi Becky,

I'm Rob. I'm 40 and was diagnosed with SLE five years ago. I have most of the same symptoms you describe. And not just the symptoms, but things you say, like how you know something is wrong with you, but you don't know what, is the way I felt back before my diagnosis. I certainly do not want you to be diagnosed with Lupus, but there is something wrong and you need to know what it is before you can put together and effective treatment/managment plan.

Just about all of us here have dealt with the double edged sword of being diagnosed. We don't want to find out that we have a disease or condition, but finally having an answer as to why we are experiencing all these symptoms ends up being a relief, even if it means we have Lupus. I know this is scary. You are frightened, I know. But take heart in the fact that many of our members here have lived with, and managed this disease for a long time, and have had fulfilling lives despite it. I'm five years into it, and I do have my bad days, but I have quite a few good ones too. Five years and still kicking, albeit a little more slowly these days.

I find it kind of silly that you were told to stop researching on the internet because it would make you "sicker". This is your body, your life, and you have every right to learn as much as possible about something you may think you have. An educated patient tends to be a less frightened patient. And of course, an educated patient can be an advocate for themselves in the all too common situation of being told that this is all in your head. The information you will find here is very accurate, and the shared life experiences of our members living with this disease are worth their weight in gold, and then some.

Anyway, I just wanted to say welcome to our group, and please make yourself at home. Let us know how your tests go, and what you find out.


12-16-2008, 11:44 AM
I know my outlook is better the sooner i get treatment. I figure it's been about 3 years since the first set of symptoms maybe longer. i just figured i was sickly or caught colds easily. but as they become more frequent and at 30 i have seen at least 2 specialists it was time to take action. thank you Rob and the others for your encouragement. just knowing will be some relief then i can focus on treatment. the pain has been manageable for me so far. i still go to work everyday and play with my kid and do my household chores. it's the itching and general stomach and back pain that hinder me. i've noticed lately too that looking at lights really bothers me. the xmas lights are up and the blue ones if i look directly at them they make me sick to my stomach. i had lasik on my eyes a few years ago and just figured this was a side effect but now i'm not so sure. i have missed a few days of work this year because of stomach bug but no one else was sick or got sick. i had at least 10 sinus infections last year. i was put on allergy medicine and told to use nose spray but they kept coming back and now i have to use the strongest antibiotics because of immunitiy to them. it's only been a few weeks that the hip and knee pain started. but i've had problems with my rotator cuff in both shoulders. and lots of neck pain on and off. literally feel like i'm falling apart some days. and now that i keep hearing its hereditary i'm worried about my daughter. she is 5 and is sick all the time, no rash or pain thank god. so maybe it's just being a kid and not washing her hands enough. thanks for listening to me ramble sometimes it just helps to say it.

Angel Oliver
12-16-2008, 01:07 PM
Just to say hello and welcome to you. I am also new here. You have found the best place here as it is full of lovely knowledgeable people who fully understand Lupus. I hope you get the help you deserve with your doctors and just to let you know i am here :)