View Full Version : Say hey to the new guy..
06-12-2008, 01:27 PM
Browsing the net and found this website and wanted to say hello to everyone. Heres my story:
A couple weeks ago I woke up with a rash on my face. Having no clue what it could be I started searching the net for facial rash and everything related. I stumbled across some pictures of the butterfly rash and its connection to lupus. Its well defined but normally is very light and unless you look close cant really tell that its there other than the slight blush to my cheeks.
Over the next week I started to develope more symptoms which include, fatigue, muscle aches, joint stiffness and dull aches, and the shakes. Ive never really had trouble getting out of bed or staying active but these last couple weeks I cant find the energy to make it to work.
A couple days ago I went to the VA hospital to explain my situation to the doc. He said he doesnt think its lupus but couldnt offer any explanation for the rash or my symptoms. Im assuming he dismissed lupus mainly because I have no family history of lupus and Im a white male. He did order some blood tests which I assume included the ANA test.
Ive always been healthy and never had any major health problems. I returned from a deployment to Afghanistan and cant help but think they may be connected.
Some days I cant help but think this is all in my head.
Thanks for listening to my ramble, Hope your all having a good week.
06-12-2008, 02:05 PM
Good luck with the VA. My first rheumatologist was an army doc and he told me it was all in my head and to take some tylenol for the pain. At the time I had classic joint pain and a positive ANA. I thought it was all in my head too....all these symtoms I just chalked up to stress. A year later I saw a civilian dr and she ran a a bazillion tests and I now have a lupus diagnosis.
It seems like your symptoms have come on rather suddenly....for me they were very gradual, but I'm not sure what is normal. At least he is running tests...that will help a lot. I would start keepign a journal if you haven't already. This will help you see a pattern and be better prepared at your drs appt. Diagnosing lupus is a guessing game, that is for sure!
06-12-2008, 02:11 PM
Firstly, let me thank you for serving this country so bravely. I am very grateful for you and your fellowservicemen of this country for my freedom and liberty today.
OK, with that taken care of, Im sorry you are not feeling well. Lupus does NOT have to run in a family, though sometimes different autoimmunes diseases do, but defnately not required. Secondly, though lupus does affect a much larger percentage of women than men, it does occur in men as well. As a matter of fact, there are a couple of great guys who are members of this board! So, lupus is certainly posiible. I know I have read in many places the health troubles are soldiers are experiencing when they return home from the middle east. Does the doc think there could be a connection? I know there are many complaints of the brain fog, joint and muscle pain, stomach problems, etc. Feel free to stick around - this is a great place to get support. I hope you find some answers soon!!
Take care of yourself,
06-12-2008, 02:52 PM
Thank you both for the info and support.
I thought I was supposed to hear back from the doc today but its getting late and doesnt look like I will.
Ive read some interesting articles about military service overseas and lupus. Some say the anthrax vaccines we recieved could be a possible cause. Gulf War Syndrome is also known to cause lupus like symptoms. But no connection has been confirmed.
Ive been trying to track down other causes of the butterfly rash but have yet to track down anything that would explain it. The doc said it was probably an allergic reaction to medication. I then explained I wasnt taking any medication.
Does anyone know what other conditions can cause the butterfly rash?
06-12-2008, 04:16 PM
Welcome to the board.
I'm in lupus limbo. I've had a possitive ANA test, another boarderline ANA and two negative ANA's. It would seem that no matter what your test results come back saying if your doc makes a diagnoses on one blood test, don't fall for it.
My mother had lupus, and my sister has it. I've had the butterfly rash since I was 18 or 19 yrs old, along with many other symptoms.
Lupus can be triggered in to action by many different things. Like say OoOOo sunlight. Don't suppose you saw much sunlight over there in Afghanistan ..... hmmm.
It can also be activated my medications, stress....well lots of things.
While you are waiting to find out...some things that you can do for your self are:
- Avoid hanging out in direct sun. Wear a hat. Like one of those aussie hats. Where 45 or 55 sun block, and a really good pair of shades. Over exposure to the sun can cause fatigue, and joint pain. ( I also suspect it causes typos, but shshsh that's just a theory I'm working on)
- Eat healthy. Fresh fruit and veggies, beans, fish. Get the pop and sugary stuff out of your daily routine. ( you can have some...just clean it up abit) You want your body working at top form so you have to feed it properly.
- Get proper rest. Listen to your body. When it says ENOUGH, it means it.
- Exercize. Don't knock yourself out, but you need to move your joints and you muscles. NO high impact stuff. No jogging! Walk, bike, swim. Light weight lifting.
I'm sure a few others will be along to welcome you. Keep at those doctor's till they find some answers for you. :)
06-13-2008, 03:10 AM
Thank you for serving our country. I am also a veteran. I served in the United States Navy for 5 years of active duty and 6 years in the reserves before I found out that I have SLE (lupus). It was many years ago that I served, but it was all worth it. Thank you so much for defending this great country.
I hope that they can get to the bottem of what is happening with you. A malar rash indicates an autoimune problem and could be Lupus. Let us know what the test results come out to be and please do not give up and let them give you the run around.
You want to know an interesting fact. One of the number one drugs of choice in the treatment of Lupus was found by accident right after world war two. The men and women that went to Africa were given Plaquenil to combat Malaria during the war. When the war was over, some of the people that took the Plaquenil for about a year or more suddenly came off of the medication and they suffered Lupus flares, because they had Lupus the whole time and did not know it. This is how Plaquenil became one of the medications of choice to treat Lupus. They do not quite understand how this Anti-malarial drug works, but it does. I just thought that I would throw that in.
I hope that they can find out what is happening with you. God Bless.
06-13-2008, 07:53 AM
Wow! I didn't know that about Plaquenil! I love learning new things :)
Another thing....as I mentioned my trouble with military drs, and I'm sure you've discovered, it is very hard to find a dr to listen to you! I started showing signs of lupus two years before my diagnosis and kept going to the drs for strange things, but they wanted me in and out of the office. So, that's why it is so important to keep a journal and MAKE them listen to you! You aren't crazy, and that's what we feel like when we have drs that don't listen to us! And the blood tests don't always give us a sure answer. So hang in there :) :)
06-13-2008, 08:09 AM
Yes, I too have had trouble with military doctors, big time. They do not want to listen to the people in the military. The VA is like that too, unfortunately. They just want to get you in there and out of there as fast as they can.
My Rheumatologist told me about the Plaquenil and how it was found to work by accident and that they still to this day do not fully understand just how it works, but that it is excellent in the treatment of Lupus. I have been on Plaquenil since 1996, so it has been a long time and yes it does help a lot. It takes a good 6 months to fully kick in, but it does work for most people with Lupus.
06-13-2008, 09:48 AM
First and foremost, thank you so much for your service to our country. And to the rest of you on the boards who have also served, I humbly offer you my gratitude. As for lupus, diagnosing this beast can be tricky business. You are doing the right thing to join the forum, to ask questions, and to learn as much as you possibly can. If you have lupus, your self-education is the key to being your own best health-care advocate. Many lupus patients have presented with vague symptoms over a number of years, making the diagnostic process frustrating and difficult. Insist that you be taken seriously. You know your body better than anyone, including the physicians who partner in your care. You are in charge. Find a doctor who will listen to you and work with you.
You are always welcome here.
06-13-2008, 09:50 AM
Hey to the new guy...Hi Antiquity...
First welcome, Antiquity...I am Oluwa. I am a vet, not a war time vet, just did an active duty Navy stint of 6 years eons ago.
Lupus is a long tango dance with doctors. Lupus can be an accumulative disease. Not all symptoms at once...and spread out over years...
Lupus is a great mimicker of other diseases, so they should rule out others before diagnosing.
Do you think the facial rash maybe rosacea? Redness on the cheeks, nose, chin or forehead with small visible blood vessels on the face?
Have you read the criteria for a diagnose of Lupus, not having a diagnose doesn't mean they shouldn't treat your symptoms...
The eleven are...and you would need 4 of the 11 for a definite diagnose. Remember diagnose is different than treating what they suspect maybe...
The Eleven Criteria Used for the Diagnosis of Lupus are..
Malar Rash ...Rash over the cheeks
Discoid Rash ....Red raised patches
Photosensitivity ....Reaction to sunlight, resulting in the development of or increase in skin rash
Oral Ulcers ...Ulcers in the nose or mouth, usually painless
Arthritis ...Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)
Serositis ...Pleuritis or pericarditis (inflammation of the lining of the lung or heart)
Renal Disorder ....Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)
Neurologic Disorder ....Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects
Hematologic Disorder.....Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.
Antinuclear Antibody ....Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.
Immunologic Disorder ....Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).
Keep looking for your wellness, and it isn't in your head. Pain, physical changes is the body's way of alerting you something is wrong
06-13-2008, 09:56 AM
Welcome Antiquity! So sorry you're having troubles. As well as the other wonderful advice you've been given might I also suggest taking 4 regular ibuprofen. I take it 3x a day, someone else on here takes it twice a day and it's enough. It should help with your joint stiffness at least. I was taking Meloxicam (a very strong anti-inflamatory), but started having stomach bleeds so I had to switch to something easier tolerated. And might I also suggest a B12 complex to help with the fatigue. It probably won't get rid of all of it, but I used it with good results for the last 20 years.
Bad doctors unfortunatly aren't limited to just the military. While mine does believe I have lupus, he won't treat me correctly for it, and has with held my really bad results from me which is just stupid. I found out when I went back to see him in May that my labs in January were much worse than what I was led to believe. He gave me part of my results, but did not give me my ANA (antibodies that attack your healthy tissue), sed rate (inflamation in the body), and micros of my urinalsis. Instead he lied to me and told me my ANA was borderline (it was 320 which is very postive), that I did have some inflamation (he told me in May that in Jan it was astronomicaly high), and my UA indicated my kidney's were going bad. Needless to say, after my first Rheumy appointment July 28th, my reg doctor will be fired. I had to request to be sent too. He wasn't going to send me until my ANA was in the thousands. I guess he just wanted the money all my health problems would bring if I waited.