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I think I may have lupus, but the blood work my primary did came back normal.

I feel awful… my shoulders, legs, neck and head are so achey. Feel like the flu aches, but my primary care physician said my blood work is all normal.. do I get a second opinion from a rheumatologist? My muscles and joints feel on fire and spasm often.

  1. It never hurts to get a second or third...or tenth opinion. The "spasms" to me would be an indication that something is off. Everyone is different and it could be something non alarming but you'll never be sure until you're certain or until it's too late. It was quite a battle for me to learn what was going on. What finally pushed me was whenever my sister passed away a couple years ago at 30 years old from organ failure attributed to misdiagnosed lupus and she has similar issues I was dealing with. I was working as master electrician at the local power plant and kept feeling like you stated and then I started getting facial rashing and my mouth went nuts with ulcers and thrush. I can't tell you how many times the doctors and even "specialists" would accuse me of lying about my symptoms and saying I'm too young to have anything like that wrong with me. It can be a real depressing thing just getting a proper diagnosis. Many times my blood work had come back as "fine" one day and then i'd wind up in the hospital feeling like i was on my death bed then they would treat me like i was a "junkie" and boot me out the door and then the same day another doctor would discover concerning results and ANA positives. I'm not going to bore you with the details but you know what your body feels like and it's not going to show all the time but if you feel different and unwell then make sure you push against the doubting until you're certain. It could make the difference between an early end like my sister had or being excited to make it to 33.

    1. spot on sorry that your sister went undiagnosed. ~Racquel~ lupus.net team member

  2. Hi, !


    I am so sorry you are experiencing symptoms but do not have a diagnosis, yet. I agree with that you may have to keep pushing for answers. Don't be afraid to seek a second or third opinion. Also, you mentioned that your bloodwork was normal. Were those recent tests? And diagnosing Lupus can involve more than bloodwork. Here's some information on tests that can be used when diagnosing Lupus -- https://lupus.net/tests. Also, has your doctor ruled out other autoimmune conditions, like Rheumatoid Arthritis? I only ask because there is a form of RA called seronegative RA. It occurs when lab results come back clean or inconclusive, yet a person is still experiencing a myriad of RA symptoms. And, RA has some symptom overlap with Lupus. Here's a little info on seronegative RA from our sister site dedicated to RA -- https://rheumatoidarthritis.net/seronegative-diagnosis. I don't want to make you think that I feel like you are dealing with RA, but I wanted to amplify the fact that test results can be misleading. And you may have to push to get the answers you need and deserve! Obviously, something is going on within your body and those issues deserve to be properly addressed!


    Best, Erin, Lupus.net Team Member.

    1. Sorry you are dealing with such pain. It can never hurt to ask your pcp for a referral as it could be something autoimmune. It’s definitely no fun feeling that way and it’s important to check all boxes. Gentle hugs to you I hope today is a little better. ~Racquel~ lupus.net team member

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