Hi sleepy. Yes you could have Lupus but there are other tests besides the ana which you will need to have done. They alone are not enough to say Lupus.You have some of the criteria though from what you are saying. It often takes quite awhile to get a proper diagnosis. Make sure your rhuemy has all the tests you need done. Someone will post them here but meanwhile relax and don't worry to much ok. hugs marilyn

thanks marilyn. this has dragged out for four years now and i'm just desprate for some kind of answer.

I agree with Dallas. A positive ANA can be elevated for many different reasons, including other mixed connective tissue disease's. They can even be elevated because of a virus and completely healthy people can also have a positive ANA. Your positive ANA should be an indicator that your dr. needs to do more specific blood tests for lupus. There are several that they do before diagnosing Lupus. Have they done all the other blood tests on you like the Sed rate, C3 C4, Lupus anticoag. Cardioplin, smith, ro, CRP? Dont freak yourself out that you have lupus. You may have Undifferentiated Mixed Connective Tissue disease which can have many lupus like symptoms. If you do have any mixed connective tissue disease, there ARE meds for them. If your not seeing a rheumatologist, you need to see one.

BTW, I got really sick while I was in college too from the stress. I was not diagnosed with anything other than fibromyalgia and CFS,, Stress is so bad for our bodies...You may have too much on your plate which is causing you to feel so bad. That can be a trigger for alot of us. Over doing it, stress, lack of sleep, etc. You may want to consider lessening your load/stress.
Hugs
Melissa

Conventional wisdom is that they eliminate everything like lupus before they diagnose CFS,

but I am not a doctor and not wise, just able to think and a follower of logical reasoning, and I don't see how it's a coincidence that so many people with CFS end up developing autoimmune problems after being diagnosed with CFS,

I think that both is probably true, but that's just this skeptical one's non-expert point of view . . . . . .

Yes with a positive ANA I don't think its just CFS. Usually all bloodwork is neg for it to be CFS or Fibro. A positive ANA can be classified into a group of autoimmune diseases. I think your Rhumy should dive further into it. Good luck.

Wolfgang and Allison are correct. Usually CFS is ruled out if you have a positive ANA. Because there are no definitive tests FOR CFS, it's a diagnosis of EXCLUSION. Patients with fatigue symptoms, but NO positive tests (ANA, anti-DSdna, etc.) are given the CFS diagnosis. Unfortunately, these same patients MAY BE LUPUS PATIENTS IN WHOM THE DISEASE HASN'T FULLY DEVELOPED. As you get more symptoms, the diagnosis become clearer. Antibodies DEVELOP over time. So while you may have been negative for things initially, a follow-up may show that you are positive now. And that is the point at which the doctor CHANGES YOUR DIAGNOSIS.

Tests like sed rates and C-RP can be elevated with CFS also because these tests are JUST indications of the body fighting off SOMETHING. The definitive tests that would make CERTAIN you have SLE are anti-DSdna, anti-SSdna, anti-Smith, anti-Ro. CFS patients do NOT have these antibodies. The problem with the ANA test is that 5% of the general population have positive ANA tests with no symptoms.

Low complement levels (as Melissa noted) are also specific for Lupus. CFS patients don't have low complements (those are the tests marked C1, C2, C4, etc.)

I've noticed that many members of this group list CFS on their profiles. I think this is an issue in which the doctors have been VERY UNCLEAR to PATIENTS. I'm not sure why, exactly, maybe they are afraid of saying they were wrong? But it's not much different from patients initially diagnosed with MCTD who are rediagnosed with SLE. SLE is a disease that DEVELOPS. So it may LOOK like something else in the beginning. That's why so many of us were misdiagnosed. Anyway, you can stop worrying about CFS.....

Tracy

Hi Sleepingbeauty,

I'm a college student too, although I haven't been really sick as long as you- the real life-changing stuff happened around February. I initially thought I had hypothyroidism when I finally broke down and decided to see a doctor at which point all I had a elevated SED rate and high mono titers but did not have mono (which really mean nothing in infectious diseases as normal people have it) and anti-depressants were suggested (why do all doctors go here- so hurtful!), and then was referred to a natural MD who then- without doing ALL of the tests- or even ANA, DX me with CFS and ordered really expensive nutritional testing and adrenal testing to confirm. Long story short, everything came back two months later, I still felt absolutely awful and was barely coping at school and was even on student disability on the idea I had CFS, and everything was normal on the tests that were supposed to show CFS.
So after three months of a battery of tests and doctors I finally found a rhuemie who is treating what he believes is a mild/early expression of lupus and it made a world of difference! I have a positive ANA in two patterns, a low C4, and positive anti-cardiliopin and lupus anticoagulant.
So I would definitely follow up with this doctor who believes it's something different and get to a rhuematologist like everyone suggests. I completely understand how hard it is juggling school with your body seeming to rebel against you! Now that I really feel like I understand my disease more and what my body needs I'm feeling so much more prepared for school this semester.
Please continue to follow up with doctors who want to help you as you deserve it!

Also, tracy I had a questions about the SED rate in CFS- I thought that absolutely no tests were positive especially SED rate as there is no actual documented inflammation in CFS which, from my understanding from my doctors, is why people get stuck with it when they have no answers in the tests.
It may be that the sed rate is only high at first due to a virus that instigated CFS and goes away shortly when the symptoms remain...I'm not sure, just curious. I know my positive SEd rate over 6 months was something that really stood out to my rhuemy along with the other tests.

Trigirl,
I hope your rheumy suggested you take a baby aspirin a day for your phospholipid antibodies to prevent any clotting episodes. Its completely safe for most of us to take with our meds. I have APS and will be on aspirin indefinitely.

trigirl you are absolutely correct re sed rate and CFS. hugs marilyn

Thanks for all your help and comments, they are much apperciated and have given me alot to think about and ask the docotor.

Trigirl i completely understand i'm going back to university soon, I was bearly coping at university before the summer in fact I'm still behind on assignments now. I need some help because I can't cope with it all. How did you go about getting something done. All my doctor ever seems to do are hundreds of blood tests over and over again.

I had the same problem with my initial doc at college who was really nice but wasn't really experienced with more than common college ailments so didn't bother to even run further tests and decided that it might be chronic mono (something that several infectious disease doctors have told me does not exist as an actual disease itself just raised titers that could indicate a number of things) so basically once I couldn't walk to school anymore and thing correctly (fog) I finally admitted I needed help whether they wanted to give me a name or not. Going on student disability- which I will continue this fall- was a life saver. I recommend that either the doc who seems to think its autoimmune or someone who at least wants to understand talk with you school. They don't even have to have a name- just a vague idea, even the undifferentiated connective tissue disease is fine and get them to back you up when you need to talk with your professors for extensions or extra time on tests.
In terms of getting a DX, well when I went home to see a family doc for the summer I set out focused on finding answers and pretty much consistently asked her for referrals aside from the ones she gave me- i.e. endocrinologist, infectious disease, neurologist, and rhuematologist. I even printed up a sheet of symptoms and ordered them by parts of the body- brain, muscles.skeletal, skin, etc so that I wouldn't have to remember it all because my mind isn't as sharp at it once was and there's so much!
If you have a positive ana along with other signs of an autoimmune disease your doc should be getting you an instant referral to a rheumatologist not mucking around with more testing that they aren't trained to read properly with your symptoms. I would be very frank with your doctor and write down your questions and concerns prior and stress that you're in college and you need to be concentrating on that right now and you need to know that you have medical care that is trying to TREAT you not wait around until you fit a perfect picture.
For example, my rheumie is still waiting to either biopsy my rashes or more things to express before giving insurance a lupus dx, but he is treating me and I can actually cope with life now.
As for the depression meds, I hope you stopped them if they weren't working- which should have proved to your doctor that you're not only not depressed but need help.
Please feel free to message me about any more questions you have!

luvmyanimals: my rhuemie did mention taking a baby aspirin, but I had heard omega-3's actually thin your blood so I have been taking a double dose of them to try it naturally. have you heard of this?

Sed rates can be evevated for a number of reasons. From www.webmd.com//a-to-z-guides/sedimentation-rate?page=2 is the following excerpt. Note that the LAST ENTRY is VIRAL INFECTIONS.

I'd appreciate it if when people "correct" me, they take the time to post a reference for the information instead of talking off of their heads without a shred of information to back up the correction. Be polite and have a citation to back up your correction.

In this case, the correction was NOT correct. Posting different and incorrect medical FACTS confuses people. . I hope that everyone can see from the info below that a variety of ailments can cause a shift in the tests that are "acute phase reactants," pretty much ANYTHING that causes a reaction of the immune system (whether that reaction is toward our own bodies or towards a virus.)

High values
High sedimentation rates may be caused by:

Autoimmune diseases, such as systemic lupus erythematosus or rheumatoid arthritis.

Cancer, such as lymphoma or multiple myeloma.

Chronic kidney disease.

Infection, such as pneumonia, pelvic inflammatory disease, or appendicitis.

Inflammation of joints (such as polymyalgia rheumatica) and blood vessels (such as giant cell arteritis).

Inflammation of the thyroid gland (Graves' disease).

Kidney, bone, joint, skin, or heart valve infections.

Pregnancy and preeclampsia (toxemia of pregnancy).

Viral infections.

I agree with Tracy because I just had my sed rates checked to rule out cancer or a virus when I was really sick this last time. It was used to rule out anything else going on in my body.

Trigirl....regarding the baby aspirin. I have never been told to take omega 3's to thin my blood and I have APS. I would start taking something that has been proven to thin the blood since you have the phospholipid antibodies. You dont want to mess around with something that isnt a sure thing (you dont want to clot). I did want to ask you if your rheumy has suggested that you have APS which is what is making you so sick. I have primary APS and when I was first diagnosed I was so sick...I only had a positive ANA once but my phospholipids were extremely high up until a year of being on plaquenil (which is when they started to go down). APS is not a well understood disease and it can mimic Lupus almost to a T. Plus clotting, minus the butterfly rash. Its hard to tell really if you have APS or Lupus if you A. have not clotted (you DO NOT have to clot to have APS) B. The more lupus specific blood tests are negative. The good thing is that both APS and Lupus are treated pretty much the same, med wise except for added blood thinner. Its possible that APS may be causing your illness or that APS and lupus are causing your symptoms...Just wanted to let you know this info. I hope it made sense.

Sleeping, have you been tested for Lyme disease? Have you had the beta 2 glycoprotein test done? Another virus which can cause similar symptoms to Lupus is FMF disease. It is an inflamatory disease and not tested for often enough as it should be. I met a woman who was misdiagnosed with Lupus and actually found out she had FMF (familial mediteranian fever).

thanks trigirl and everyone else for taking time out to reply. I feel a lot more postive now. thank you all =]