Symptoms leading to diagnosis - Lupus Message Board

SusanM · 05-08-2001, 04:11 PM

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.

Irish · 05-08-2001, 07:55 PM

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.

SusanM · 05-09-2001, 12:55 PM

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.

Jeri · 05-12-2001, 07:27 AM

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

Rebecca492 · 05-14-2001, 01:26 AM

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.