Do many people who have been diagnosed with lupus get diagnosed without ever having joint pain, chronic fatiue, and fever? Or does lupus almost always include these symptoms? My doc has tested me repeatedly for lupus antibodies but I have never met enough of the criteria. I've had positive ANA 1:160, and antiphospholipid antibodies. I tend to get achy thigh muscles (muscle inflammation?) I have a lot of problems with a very bothersome face and scalp rash that is not a typical lupus rash, and I have problems with my thyroid. The only joint pain I've had is slight pain first thing in the morning in my feet-my ANA was 1:160 at the time. Never had constant fever. I'm allergic to sulfa drugs and very sensitive to almost all medications. My iron was recently low. I just wanted to know about others experiences who definitely have lupus. thanks.

SusanM - Everyone is different; however, most of the people I know who have Lupus have had the joint pain and extreme fatigue. I got to the point where my husband had to help me out of bed in the mornings. I was so stiff and sore in my legs; especially my thighs.

I had nights when I didn't sleep at all. I would drag myself to work and walk around in a daze all day. I am lucky that I managed to hold on until I reached retirement age. The last year I worked was very uncomfortable.

As for the rash - I have never had the rash across my nose and under my eyes like a lot of people have. I don't know if that means anything or not. I have the Lupus/Scleroderma Overlap so you would think I would have the rash. I do have a rash on my legs sometimes and on the bottoms of my feet.

Good luck to you in the control of your Lupus. The important thing is to pick a very knowledgeable and caring doctor.

Thanks for responding. I have had a lot of problems with fatigue during the past year. Even after sleeping all night I feel so tired that I think it must be abnormal, but I did have low iron, and thyroid problems too. I've read that thyroid disorders are one of the most common disorders associated with lupus. Responses from anyone else would be appreciated too.

Hi Susan,
Yes, the fatigue (for me anyway) was evident off and on before anything else. In fact one fall I was so incapacitated by it that I thought I had the flu. I was in bed the entire 2 wks my Mom was visiting except to get up and take her to dinner- then back-to-bed-I'd-crawl!
Mostly I had to ignore it until the pain and low grade fevers started to come together with the joint pain. By that time, I guess, the laboratory picture was coming together with the clinical picture- cause my internist pegged it right away. (I didn't even go to him for this stuff- but for what I thought was an eye infection that occurred at the beginning of a flare- by the time I saw him I was in a full-blown one)my ana titer was 1:640. I was very fortunate to have it all come together at one time- finally- cause I think most of us suffer a long time with what would easily be "dismissed" by most physicians as female complaints or "just goes with the territory of being female"- tired, trouble sleeping, stiff, sore, etc. This is all part and parcel of fybromyalgia, too. FM is easily dismissed, too. I blew off my friends who suffered with FM until I (1st hand) realized how difficult that is. At least the lupus can be treated.
Hang in there and in the mean time: study study study. Information is power!
Jeri

I like the others had extreme fatigue. I also had the joint pain, bald places on my scalp, sores in my mouth, and the "rash" It has been nine years now since I was diagnosed and ususally have a flare up around this time of year. Usually, it is limited to just spring and summer. So as long as I take the plaquenil I manage pretty good. I decided several years ago that I wasn't going to take the plaquenil...BIG Mistake. Broke out in the "rash" and it took a long time to get the rash to clear.

I didn't have fatigue
No joint pain
no fevers!

I went straight to Blood problems and Pleurisy not to mention nervous system problems... only after about 10 years did I have those 3 symptoms first mentioned.

Everybody is different.

i to have no joint or muscle pain well maybe just slightly. my biggest problem is fatigue, fatigue, fatigue!
i do have anemia, a positive ana and a low elavated level of antocardiolipin
antibody. i also have a leision on my face that was diagnosed as (tumid)
lupus not discoid. i go to se a specialist in a couple of weeks. i will keep checking the board to get updates on how you are doing. i have not been diagnosed with any systemic
lupus and hopefully they can find another reason for my fatigue am going to keep my fingers crossed. thanks for listening

Kia:

You say you haven't been diagnosed with Lupus, but you have extreme fatigue. There are several diseases that give you extreme fatigue. Diabetes is a disease that causes you to be tired all the time. Be sure and have the doctor check you for that. My daughter-in-law has it and can't seem to get enough rest. The doctor also told her to lose several pounds. She wasn't very big to begin with, but she has lost several pounds and is feeling much better.

Lupus is a terrible thing; I sure hope you don't have it. It isn't much fun, but you must learn to live with it.

Irish

I had no joint pain whatsoever. I'm told my my doctors that I am an unusual case. It was suspected by my regular doctor that I had lupus in mid-June. I had some really weird and vague symptoms and fatigue was one of them. I had a positive mono test earlier this year and I just thought what I was experiencing was from the mono. The only other constant symptoms that I had in addition to the fatigue was lots of swollen lymph nodes and a constant fever. But this was all explained away as the mono.

Totally on a whim one day while running errands, (June 15), I stopped at an Urgent care clinic to see if they could give me something for an eye infection I had. The doctor I saw there was really intrigued by some of the other symptoms I had recently and asked if she could run some blood tests. I told her yes--. I didn't even bother to ask what she was looking for or what she was doing. Anyway, a few days later I was told that I had some abnormal tests results (they had done a CBC, SED rate and a third one that I can't remember right now). My sed rate was 89 and the one I can't remember was also high. She called my regular doctor and they had me come and and run some more tests. After those came back abnormal, they had me do a few more and at that point told me they suspected it was Lupus. Then my ANA came back 1:1480 and my urine protein at almost 3%. I got a pretty definite diagnosis at that time but they still wanted to run the Lupus panel. By this time though, my doctor had made an appointment for me with a Rheumaologist. I went in a couple days later and--the lupus panel had come back positive and the rheumatologist confirmed the diagnosis.

I guess I have some serious kidney damage but no joint pain or involvement. It's weird because I wasn't looking for lupus--never even crossed my mind. And I also received a definite diagnosis (unlike most) and I got a diagnosis pretty quickly. Within a month.

I don't know if this helps you or anyone but if you have more questions, just post it and I'll answer the best I can.

Over the past 15 years I have had extreme joint swelling and pain, swollen lymph nodes, psoriasis, and photosensitivity. During that time the joint pain was misdiagnosed as rheumatoid arthritis, and all of the other symptoms were treated as seperate conditions. Sick of feeling like an alien I decided to stop going to doctors and just deal with my symptoms on my own. I took naprosyn or vioxx for my joints, used creams to manage the psoriasis, ignored the lymph nodes because the biopsy came back perfectly fine, and stayed out of the sun to address the photosensitivity (it was about 6 years of no doctors). I recently (3 months) quite smoking and fell into a depressive state along with some other random symptoms including more serious joint pain so I decided to see an internist. He ran blood work and told me that I definately did not have arthritis because my rheumatoid factor was negative, he thought I had some kind of mixed connective tissue disorder and suggessted that I see a rheumatologist because he was not an expert in this field. I took his advice. Since that time I have been diagnosed with Lupus. I have never had fatigue or the "rash" nor do I have any organ involvement. I have been reading the boards for about a month and am starting to realize that we are all very different and special cases. This disease takes on the most random manifestations, and each person has their own, very personal, symptoms. I did start taking Plaquenil 3 days ago and hope with all my heart that it helps my arthritic pains, but I plan to start looking at how I can keep Lupus at bay. There's nothing I can do about what I already have, but I hope to be able to fascilitate the maintanance of organ involvement. If anyone out there has any words of wisdom I would like to hear about how to prevent further damage and progression of the disease.