Why are my lupus tests negative?

hi I have all blood work negative my doctor says i look good on paper. My ana test is negative, my rhematoid factor is low, and the test to determine inflamation or infection is nil. But,

The exhaustion, fatigue and weakness continue and I still cannot shower in the morning (when it is worst) because as soon as the hot water hits my arm and leg muscles they relax to the point of collapse. I bruise easily and cuts take a long time in healing. I experience rashes on my arms and chest as well as my face. Even though these are quite red, I do not feel them like I did in September when I had the hot flashes from menopause. At that time, I felt the heat and was hot. With these rashes I only know if they exist because I see them in the mirror or someone points them out to me. As the day progresses they worsen. If I am in the sun or hot (after exercising for example) they worsen. I go to bed every night with a wool cap on because I wake up every morning with flu like symptoms: ear ache, sore throat, sometimes a fever, and a headache (which is different from my migraines). I have shortness of breath that is pointed out to me when I answer the phone and people ask me what I have just been doing which is nothing. I regularly have cold sores and/or sores around my nose that I can control by over the counter ointment if I get it when it burns and is tingling. I constantly have a 'dizzy' effect in my head and at times I have to lie down because I feel like I will pass out. I have red 'pimples' that are full of blood on my shoulders and upper chest. My left hand continues to be red and swollen (the Diclofenac cream does help in the mornings when it is at its worst) Finally my energy levels are still quite low.

As well, gas, constipation (from pain meds), dizziness, lightheadness, feel of being sick all the time esp after eating.

HELP ME PLEAASE I AM 48 in two weeks

Wow..you are not alone! I've had symptoms of lupus, RA, mixed connective tissue disorder for 10 yrs. I just turned 40 and flares are triggered more frequent and change somewhat each time. ANA and ESR have been high more than normal yet reumatoid specialist yesterday treated me like I was making it all up because most of my tests were normal this time. Its bad enough when friends and family think you're exaggerating but when doctor is completely uncaring and unwilling to help or listen, its heartbreaking. I told him my lungs hurt and he said "are you coughing up blood"? I replied "no". He said, "then you're fine". Tonight I had a close friend tell me she thinks I feel sick when my spirituality is low. She doesn't understand or believe the "autoimmune" story either. Im going to stop telling people I dont feel good. I know its incurable...I can accept that and live with it. It saddens me more that the doctor doesn't believe me based on bloodwork only. Best wishes to all! I believe you!

i know this is an old post but have you been tested for Multiple Sclorsis

Thank you for asking. No, I have not been tested for multiple sclerosis. However, since my last post I compiled all my bloodwork over the past 10 yrs and faxed it back to the doc and he said it is in fact lupus (sle) and vascular disease. The doctor acted somewhat remorseful for his behavior before. Good news is I feel great, so must be in remission again thanks to high doses of prednisone. I'm off of that now, am taking no prescription and will avoid triggers at all cost! What a blessing that I found respite, my heart bleeds for those who suffer still. God bless!

I am considering going to an allergist to see if the foods I am eating are causing an inflammatory disease of some kind.

I am in the same boat.All the symptoms but negative blood work.

I am now being tested for Lupus. I have many symptoms like Irritated eyes, hair loss, troubles breathing, fatigue, muscle + joint pain, stiffness, swelling, aches, trouble thinking, sleeping, severe headaches, dizzy spells, and swollen glans. I hurt everyday and I think I will cry if the doc doesnt tell me that I have Lupus. I am in pain everyday all day and I just want something to help with the pain. I feel for each and everyone of you for myself I am going through the same.

Maybe you have Fibromyalgia or some other inflammatory disease. Some people recommend consulting a naturopath for diagnosis and treatment.

I am waiting still on my results. All the symptoms that I have go with Lupus.

I have had 2 negative ANA tests. I have a sister with Lupus and one with Fibromyalgia. I think we would all be wise to stay away from technology as much as possible, because I think radiation is having negative effects on our health. My sister who has Lupus has to take 6000-8000 mg of fish oil each day. Since I've been taking the same, I have been able to stop taking NSAIDS for arthritis and fibromyalgia and my cholesterol/triglyceride profile is excellent. Prescription medications can cause many side effects that can mimic disease processes. Fibromyalgia is notorious for doing the same. BP meds can make you feel breathless and fatigued. I would recommend allergy testing, stress reduction, massage, healthy diet without additives, exercise, weight loss and efforts to remove various prescribed medications (including cortisone) from your regime.

Oh gosh,,,I know this thread is older also,,but its still open and I am going through the same thing.I have been for years,,being dismissed over and over again by doctors as the "usual" its all IN YOUR HEAD..I have had severe joint pain since my early 20's..I am in my 40's now.I would get the butterfly rash,lightly only if I sunbathed.Everyone would dismiss it as a "sun"rash..I would also get very painful joints if in the sun..But my joint pain is through the roof always...My blood pressure has been high since my early 20's..I have been on BP meds since about 2005 now..If I get stressed,in the heat/sun too long,or am coming down with say a cold/virus in will get what I assume is a flare..I can barely walk,get a red spotty/speckled rash in the V section( chest) are,sometimes on my wrists,elbows,knees ..it will also be on my torso..It will last about 2-4 days,then subside..It also blanches.I have petechiae all over my upper arms,slightly on thighs,on chest..I t gets worse after these epsiodes,,as after my last episode,I have several larger petechiae (blood blister type things) now on my torso.I will get horrible mouth ulcers,,have gotten ulcers small up my nose..I feel horrible.I have NO insurance at this moment.Work partime.Cant afford the insurance right now..I had positive ANA twice..Nothing more was said about it by my doctor at the time,but my insurance jumped horribly,even though I had no diagnosis other then,,some type of autoimmune disease..The doctor I have been going to now,seems to dismiss all my symptoms as just 'stress' rashes..I have taken pictures,documented symptoms,and he dismisses everything.Its horrible..It has affected my quality of life..I am in pain,I ache..I will get lung pain,cant sleep,am afraid something will set these flareups off.I have had terrible trouble with red puffy fingers,painful.I was put on antibiotic after antibiotic,,nothing worked...I also will get an itchy rash when stressed,,it looks alittle like shingles,but isnt.It isnt so widespread..Mainly will get that on torso/stomache/chest area..That rash has longer staying power.It also will scar slightly.I am sick of doctors dismissing symptoms mainly on test results.As far as my knowledge,its hard to get into an Internist/Rheumy unless your doctor refers you.I think alot of GP's have no training in these illnesses,they have rather lareg EGO'S and dont want to refer people to another doctor who might overide them.I am disgusted at this point..back in the 90's my eye doctor saw changes in my eyes and suggested I go to an Internist..I was young and dint think I really needed to go..Boy do I wish I would have now.Also,whatever I have is estrogen fed.,,as I would get flares pratically everytime I had my period.I am curious if others noticed that also.I am in my 40's now,hormones are changing,,had a terrible time with this heat this summer,,,and have been having episodes,bad joint pain,rashes,flank pain on left side (worried it might be kidney issue),,Just had some bloodwork ran..minimal,,havent heard back results yet.. Also have raynauds,,having trouble with feet now on right side,,numb on afew toes,painful..vision got very cloudy also the other night in right eye..Kept thinking it was my glasses.It wasnt..was ok the next morning.need help..whats going on?

I would insist on a referral to a Rheumatologist without delay. Visiting a naturopath might also be helpful, as herbal medications, special diet and massage can help a multitude of problems.

I think a lot of your problems are being caused by stress. Buying a relaxation CD might be a very worthwhile investment.

Raynauds Syndrome and visual disturbances can be side effects by BP medications.

When you're having your period, there are more prostaglandins in your blood due to the body's need to break down the uterine lining into a fluid. Prostaglandins increase pain perception and bleeding.

You are certainly suffering from some kind of inflammatory disease.

I would also recommend discontinuing the use of cordless and mobile phones and computer equipment. Stay away from the microwave oven and use the computer as little as possible.

I went again to my Rheumatologist. He prescribed Methotrexate and Prednisone with a Medrol pack because my symptoms are lung pain, nose pain, joint pain, severe Reynaud’s  in legs/feet and hands, low grade fevers in evening, headaches, body aches, difficulty breathing, roof of mouth sore, numbness and tingling in face, nose feeling frozen inside and roof of mouth feeling cold/frozen, extreme fatigue, extreme dry eyes and soreness along lids, significant blood in urine, kidneys pain, and pain in urethra without infection, jaw is very fatigued and feels rusted, skin and muscles hurt to touch, and sometimes hard to articulate words with thoughts, pressure in head and face, and a strange but very apparent vibrating of the legs, face, and sometimes within my torso. Have been taking Methotrexate for 2 months with prednisone and still have symptoms so Doc gave me Lyrica on top of current medications. I’m taking 100 mg at night and feel much, much better, but still feel symptoms. Vibrations and Reynaud’s have lessened significantly along with muscle, tissue and skin pain. Doc said my blood work is normal so called me an enigma. Past blood work was positive for lupus and vascular disease. He said, I’m positive than negative, positive then negative and has never had a patient in his 30 years of practice that was as puzzling and contradictory as myself. He said he doesn’t think I have lupus after all and is testing me for Lyme’s disease. Test results not in. Something strange is happening with this autoimmune stuff. I’m starting to think there might be more environmental than I thought. Perhaps it’s a weird virus? If my Doctor is confused, then I’m at a complete at a loss. At least he is still trying to diagnosis me and seems to care. On a good note, Lyrica is making the pain bearable. Thanks for reading, makes me feel better for some reason.

By the way, Tippi, I have not got insurance either. It’s so hard because most of my paycheck goes to Doctor bills. I too have been suffering on and off for 10 years with blank stares from Doctors. I know they don’t know everything, but get sooooo frustrated when they say stress. I don’t feel stressed. I feel sick. I too have one eye that goes blurry and feels lazy or pressure behind it at times. CT scan of sinuses are clear. I too will break out in a rash if I go out in the sun, but have never got the butterfly rash on nose. I really feel for you and wish you the very best.

Thank You Lorikeet and Lynettebaum !I also get the vibratory sensations..I dont have the slightest idea what that is all about..Its almost like a humming feeling in the leg,I can get it in my chest area..It will pop up a variety of places.I do have fibro...I started to take Calcium,Magnesium,Zinc supplement..That seemed to help..at least so far..and it is horrible without insurance.tests are so pricey..I can only get the basic bloodwork..My results came back today..Same thing..Slightly elevated ANA,rheum factor neg,,that lupus strand test neg.Doctor doesnt think much about it,,just said he will keep an eye on things..His eyes must not be too good..I understand doctors have to have some sort of diagnostic factors to go by,,but they really do put too much faith in these test results without taking the time to look outside the box.Everyone's body is made up genetically differently,so what might show up for one person,might not necessarilly show up for someone else..Someone with the exact same sypmtoms will test grossly pos,while someone esle wont test pos at all...Some people dont even know they have lupus,until smething else unrelated to the illness goes on,and they find out by accident,while someone who is suffering tremendously wont test pos for the life of them.AND doctors will dismiss them.I also read that alot of people do not get the malar rash on their face.That was the first question asked-DO YOU GET THE BUTTERFLY RASH!????...I was like,no..not really..explained the "sun rash"..it would be on my cheeks..didnt go on the nose..I dont know anymore....something funky is going on,and it seems like alot of us are suffering in pain,fatigue...I try to live healthy...have been a vegetarian since about 1985..grow alot of my own veggies..Dont use any chemicals on them..Oh,that is another thing..I am very sensitive to chemicals,developed a nasty hair dye allergy this summer.Blistered my scalp,,itching for weeks,,,hives even under the eyelids...It was horrible.I wish you all the best too...Im sure its not much better with a clear cut diagnosis...but at least you know,then you can take the proper meds,and get the proper treatment...I just want to know what the heck is going on..