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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?

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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.
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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.
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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!
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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!
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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
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I also have had a postitive ANA... I went to a Rheumatologist and the tests (13 vials) came back okay. Just don't stop if you know your body isn't right, keep retesting, amd never hesitate a second opinion. I am still in the process of figuring mine out. I know (for some weird reason) that I have lupus, but the tests vary quite a bit. I will be going in for another ANA soon, as I recently went into the hospital with high blood pressure due to extreme swelling and my joints were basically frozen. It always hit my feet, hands, I have a gland that swells in the back of my neck. I am only 32 and I feel like I'm gonna go crazy until SOMEONE tells me what has happened to my body...... I think my earliest signs were extreme fatigue, and memory loss.... although those two have improved. I hope the very best for both of you.
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I know that I have Lupus although test don't prove it. I have lived through some bad years and with the help of a neurologist found that I was low in vitamin B12. Within normal levels but low. What I thought was inflammation of the central nervous system and brain was most likely inflammation of the digestive track that interfered with absorbing nutrients. I couldn't think straight, I saw double, I thought I was going to be disabled. Please if you have neurological symptoms get some B12 that dissolves under your tongue.

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Well...im hypothyroid,but my thyroid was going crazier up and down...i went deaf in one ear for a few days outa the blue too...my knees,hips and pelvic bones ached for months..then it disappeared, but only to reappear in my collarbone and neck area...I now have the crunching in my shoulder/collarbone right side when i try to house work thats lower down to the ground etc.  my ana was positive 1:320 speckled mixed pattern titre i believe...and crp was higher....rhumetologist said lupus very quickly..which i questioned,but he replied,"what else would it be"? I have no one in my family that has lupus....a gran that had RA very badly. Doc said stress/hormones/and sun mostly does it...with some hereditary things. I got all that...death of mom,menopause was thrown in etc....i just thought it post menopause. ps/also said i have mild chondrocalcinosis...pseudogout...this happened firstly in 2012 at age 55 or 54...

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ps/ muscles in calves hurt too when i walked
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stress is what messes me up...i feel this awful different kinda tired,then on comes the aches/pains...in my neck..shoulder...knees..hips...and stomache etc

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Hello. I'm 21 and I've had lupus symptoms since I was about 14 and freshman in high school. I had gotten really sick with what the doctors said was mono. I lost 35 lbs in 2 weeks because I was so sick. After this I began lose muscle tone rapidly and became severely weak. But they told me it was just from mono and being sick. They had tested me for lupus, it came back negative. But as my sophomore year began I continued to be weak and tired all the time. I could only make it to Wednesday before my body would crash Thursday and I would sleep for 15 hours or more. I also began having migraines to the point I would just sit on the floor crying. I also began having memory problems and becoming depressed. I thought I was crazy like it was all in my head. But throughout high school the symptoms began to worsen with chest pains, seizure like reactions to over working myself. I also experienced numbed and tingling in my hands. Also nausea to we're I couldn't sleep. I still experience most of these symptoms to this day. I actually have not been diagnosed with lupus but I also can't get doctors to take me serious or to care with not having money or insurance. I'm confident I have lupus. And it's getting worse.
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I would sleep 8 plus hours and wake up feeling exhausted ....seemed to catch everything
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I feel the same way. It's almost like it depends on what the doctor's personal opinion is whether one has lupus. I've been reading all kinds of accounts where the person could exhibit most of the classic signs of lupus and not get a diagnosis and another person can have one symptom, be ANA negative and still get diagnosed with lupus. I wish doctors would spend more time listening to their patients and not rely only on test results. I'm tired of feeling like I'm the crazy one.
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I am currently 38. My current diagnosis is Mixed Connective Tissue Disease and Sjogren's syndrome. I have an aunt with Sjogren’s as well. I’m also hypothyroid which I blamed most of my symptoms on for many years.
My doctor is not calling it lupus but he won't tell me it's not either. Stress is my big trigger. The point when I knew something was really wrong was the summer before last, I had just turned 37. I felt like I had the flu. I was so tired and weak I could barely get out of bed. My body ached all over and I had a low grade fever but to me it felt high and I had chills. I went to the ER and they didn’t find anything so they sent me home. 2 days later I wasn’t any better and I had a lump under my arm pit that wasn’t going away so I went back. They ran more tests and they still couldn’t find anything. I was scheduled for a mammogram (which later came back negative). The best they could come up with was Lime Disease which they never even tested me for. I just went home and cried...
It was when I got a new doctor with my new healthcare that I went in complaining of thyroid symptoms. At that point, I had just assumed all my problems were thyroid related. When I told her my symptoms, she asked if I had ever been tested for Lupus. My ANA came back 1:160 homogenous and I was referred to a Rheumatologist. Further ANA testing came back with a higher titer but I’m not sure the details of that.
It’s been a battle of aches and pains from my hip to my wrists and elbows and knees. I get tired quickly. It changes from day to day. Sometimes I feel like I’m running a high fever and I ache all over but it’s always just below 100 which is frustrating because you feel like you’re crazy. You feel like, I shouldn’t be feeling this bad, I should suck it up! Getting some kind of a diagnosis does help.
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