the earliest symptoms you can remember of your lupus

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.  

How did u treat lupus

So I'm not sure if I have lupus or not. I found out seven and a half years ago that I had a positive ANA but didn't really have any symptoms so the rheumatologist told me not to worry about it. At that time I had chronic back pain and bilateral tendinitis in my wrists. About four years ago I began to have pain in my hips and was told that I had bursitis. Between my back and hips, I haven't been able to sleep in a bed for years without waking up multiple times a night due to pain, having to change position. Sleeping in a recliner is perfect. I then began to have left shoulder pain. MRI results show biceps tendinitis and calcific tendinitis. My shoulder was practically frozen. My right hip then got really bad, to the point of having pain with every step. The hip pain has let up some, but now I have popping in both knees when going up stairs, and occasional pain going up and down, as well as crunching in the right knee with sitting. My new gp ran a bunch of blood work, including redoing the ANA to see what it's at.I am waiting for my follow up to find out what the results were. I do not have the exhaustion. I also have a muscle in my neck that has been stiff for years, and almost daily headaches but no migraines. I also have a horrible memory. To those of you who have been diagnosed, what do you think? Do I have it or not?

My dad has Rheumatoid Arthritis. I believe the ANA is used to diagnose RA too. Your story sounds incredibly similar to his. He's been living with his diagnosis now for well over 15 years. It might be something worth looking into. Sounds painful and I'm sure having a diagnosis can only lead to having better treatment/therapy.

I experience the same and feel the same .juat afraid but also feeling like is dis all in my head

This sounds very familiar to what I've gone through. Lupus test just came back negative. But, all my symptoms say otherwise. I was a teacher and recently resigned. I relate to your trying to make it through the week. I was done by Wednesdays, absolutely exhausted. I had what I thought were allergy and asthma attacks, but my hands would curl in and I ended up having seizures. I'm noticing specific triggers like gymnasiums. I have major fatigue, muscle weakness and twinges and cramps, chronic migraines, trouble focusing, memory loss, pain in my back, ribs and sternum often, my fingers swell and nail beds will get red and swollen, my feet and legs swell at times. At 42, I would feel better with a definite diagnosis. Not sure I'm going to get one anytime soon. By what I've read on here, looks like will take quite some time.

Hi
I am the same. It's been a year I've been dealing with joint pain muscle pain lumps in odd joints or back of my neck. I can't keep my eyes open. Now my back and neck are killing me. My Dr had no clue so I went to a Rhumatoidologist. Took three months to get in. They've done blood X-rays and a ct scan of my chest. Everything comes up normal. I'm going nuts. Please tell me what they did to test you for Lupus.
Ty

Hi, my main symptoms started about 11 years ago in my wrists. Back and forth to doctors who thought I had carpal tunnel. By the time I had a referral for this the pain had gone to every joint in my body, to the point that I had to use 2 hands to hold a cup/glass. I found it difficult or impossible to open cans or jars. But looking back over my teenage years I was always tired and I suffered from pains in my legs. This was put down to growing pains back then. I also developed really bad prickly heat whilst on holiday, this was a first. I got referred and was told there and then he thought I had lupus.

Hey! So I am in the process of getting diagnosed. I tested positive for ANA, now I have to wait three months to get into the rheumatologist. That's the earliest appointment. When you got treated, did you get anything to help with fatigue? Mine is really bad, it's making it hard to function too. I am 22 and I knew something was wrong for a while now. Thanks!

I am the exact same way. Im 23 years old and when i first got sick it felt like inwas getting fevers or a stomach virus. Extreme exaustion to the point where i couldnt even walk down the block. I felt almost dehdrated. My nausea was so bad out of no where i couldnt eat snd lost 20 pounds in 3 weeks. I saw i saw 6 doff doctors had majorrrrr tests and all came back neg! Lups tests all neg. they think im crazy but im convinced i have it..

I a have question

Glad I'm not the only one. I kept having to go to my Dr for severe arm pain. From my shoulder to my elbow. So bad to where I couldn't raise my arm. They kept treating me for tendonitis. Finally my Dr did blood work and called me in and said my ANA was positive for lupus. I have been waiting 6 months no to see specialist. I go in April.3 days ago I got really sick feeling like I was getting a flu. Neck hurt like gland were swolkrn, then extremely fatigue then next day severe pain in right arm/ shoulder. Is this what they call a flare? Also started getting skin sores. I have though I was crazy only bring 29 and feeling this bad. It comes and goes. I also have severed headaches frequently.

I am having the same problem with my knees but they are saying it is called osrarithers very painful every day i am in pain and they still don't know if i have Lupus but my dad called me 3 weeks ago and told me he has lupus so i am guess i have it too

I have lupus and my daughter has Lyme. You sound closer to Lyme and with standard Lyme test you can easiest be missed for Lyme do very important to rule Lyme in or out with best testing. Sorry you are hurting and don't have answers but keep looking. It takes time to get right answers due to tests are not clear cut for lupus

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Oops ilads. Auto corrrct changed it ugh