the earliest symptoms you can remember of your lupus

Hello,

what were your earliest symptoms of lupus? What age were you? Any advice about diet, and what causes your flares to your best understanding?

lesliepema wrote:

Hello, what were your earliest symptoms of lupus? What age were you? Any advice about diet, and what causes your flares to your best understanding?

My earliest symptoms were hand,wrist and finger pain in my left hand only. This would be very sporadic over about 5 years with the pain lasting about 3-4 days. I just assumed I had carpal tunnel or arthritis. Anyway, last fall I started feeling very tired and different joints were mildly achey (fingers,toes,knees,elbows). I also had lots of muscle aches. This all lasted about 3 weeks and then I got better. Well, about 4 weeks ago it all started again but this time it started as my right arm, right leg and right foot going numb. Then the joint and muschle pain and EXTREME fatigue. Not disabling pain...but enough to know something was up. I've also had some chest pains. My sister has Lupus/RA/Myastinia Gravis and I also have 3 cousins who have Lupus so I started thinking that's what I have. I went to my doctor and sure enough my ANA came back positve w/ a very high titer. I still don't have a definite diagnosis as I have to wait 1 1/2 months to get in to see a rheumatologist. The thing with Lupus is it can take time for symptoms to evolve enough to where they can call it that. I know some people get a rash first and fever but I haven't had any of that yet.

I had a friend, who's sister was diagnosed with Lupis. He scared me when he told me he thinks that I have it too. My symptoms started in 1999, when I experienced tingling and numbness in my left leg, foot and toes. I had shortness of breathe (constantly) and was always getting sick with viruses and pleurisy. Over the past 6 or 7 years now, I have suffered continuously with swelling in the ankles, aching muscles and joints, like the elbows fingers, wrists, shoulders and elbows. I am always tired and dizzy and weak. I have been to specialists for Rheumatism and arthritis, but they come back negative, but no-one has thought to test me for Lupis. I have done research over the years but am afraid to mention it to my doctor or specialist for fear that they might think I am crazy. I am 42 and tired of not knowing what is wrong with me. Should I talk to my doctor about my concerns? He is now setting up another specialist because I recently went to him (crying with pain and frustration) to tell him that I am tired of not knowing and tired of worrying and want him to find out what is wrong. Please let me know who I should see if not a Rhematologist. Thanks very much for the help.

You should definitely go see a rheumatologist!! I am 21 years old and am diagnosed with Lupus Those are all symptoms of lupus so make sure you get it checked out. It is not something you want to live with and not be treated for. It will only get worse!

Before I knew what was "wrong with me," I began having shooting pains randomly throughout my body. Most times, these sharp pains were in my heart or chest and sometimes in my leg or arm. I was sick a lot of the time from viruses and often felt extremely weak. Sometimes, after having a normal shot from my doctor, my arm would be sooo weak for three days after I originally had it. I began to suffer from extreme fatigue. I would sweat like crazy and feel like I had random fevers and chills all the time throughout High School. I had numerous tests done- which all came back negative. A few months into my freshman year of college, I started to get the butterfly rash. Of course, my thinking I didn't have Lupus at the time, bought an onslaught of acne medications- which barely ever worked. I got depressed, still felt weak and then a few months later, my knees started hurting when I would walk up the stairs. When I came home during the summer, they began making a strange crunching, clicking noise and hurt pretty bad. Thinking I had hurt myself in my sculpture class or judo class, I went to see the doctor about my knees. My knees seemed fine according to tests, but she felt the crunch and heard the noise and reviewed my medical history. Then, she gave me basic tests for Lupus and we found out I was positive- even though previous tests for it had been negative!

smartgirl wrote:

Before I knew what was "wrong with me," I began having shooting pains randomly throughout my body. Most times, these sharp pains were in my heart or chest and sometimes in my leg or arm. I was sick a lot of the time from viruses and often felt extremely weak. Sometimes, after having a normal shot from my doctor, my arm would be sooo weak for three days after I originally had it. I began to suffer from extreme fatigue. I would sweat like crazy and feel like I had random fevers and chills all the time throughout High School. I had numerous tests done- which all came back negative. A few months into my freshman year of college, I started to get the butterfly rash. Of course, my thinking I didn't have Lupus at the time, bought an onslaught of acne medications- which barely ever worked. I got depressed, still felt weak and then a few months later, my knees started hurting when I would walk up the stairs. When I came home during the summer, they began making a strange crunching, clicking noise and hurt pretty bad. Thinking I had hurt myself in my sculpture class or judo class, I went to see the doctor about my knees. My knees seemed fine according to tests, but she felt the crunch and heard the noise and reviewed my medical history. Then, she gave me basic tests for Lupus and we found out I was positive- even though previous tests for it had been negative!

I appreciate your story as I am currently undergoing testing in determing what is going on with me. It's important to have stories like this because sometimes we get so used to symptoms that are normal to us that we don't realize they might be indicative of something wrong. I've realized that often times when I stretch both my arms backwards as far as I can go, I'll experience I strange crunching/cracking right around my upper ribs/sternum. I also often experience this when I arch or curl my back after not doing it for a while. It wasn't always like that. Interesting. Thanks