I Feel Like I Have Lupus but Bloodwork is "Normal"
Hey everyone,
I feel so lost at the moment and feel so frustrated, overwhelmed and down.
Since October my hands and wrists have been hurting so much and randomly go weak. I struggle to cut vegetables and do basic housework etc.
I also have episodes of fatigue where I can’t get out of bed and all my muscles ache as if I’ve done a heavy workout.
I have Raynaud's symptoms and Erythromelalgia symptoms too, which are both secondary symptoms of Lupus.
I’ve got the Malar rash on my face, which gets worse later in the day or after being in the sun.
I’ve also been getting shortness of breath and my chest feels tight, but my chest X-ray was normal.
I’ve had blood tests with rheumatology which came back normal and so did the MRI and X-ray results of my hands and wrists.
Has anybody else had this? Is it still possible for me to have lupus with this all being normal?
I just don’t know what else this could be, and when lupus was first mentioned and I looked into it, I felt like it was a true description of what was going on with me.
i think it is rare, for multiple Lupus tests to come back negative and to be diagnosed with it. I won’t say it is impossible because no two cases are ever alike. Lupus is seemingly unique to each and every one of us. Have you been screen for rheumatoid arthritis, connective tissue diseases, Undifferentiated connective tissue diseases, hashimotos, fibromyalgia? All of these tend to have similar symptoms of Lupus.
I have heard of borderline lupus as well. Where you have symptoms and/or bloodwork that suggest it but not enough info is there to make a diagnosis.
All in all, stay on-top of your health. Listen to your body, you know it best. Doctors work for you, so be persistent on topics like this!!thank you for your reply 😀
Yes I’ve been checked for RA and it’s not that, fibromyalgia has been mentioned, but due to the butterfly rash on my face they were leading more towards lupus.
But now all my bloods are back normal I’ve had nothing back, so just waiting for my follow up appointment.
gave some great insight and advice! While it is very rare to have multiple negative blood tests while still having lupus, it is not impossible! This forum has some experiences from people living with lupus who also have had blood work that comes back as "normal" https://lupus.net/forums/negative-ana I hope you are able to find the answers and clarity you are looking for sooner rather than later! You may also want to track your symptoms on this free downloadable symptom tracker: https://lupus.net/living/symptom-tracker It might make it easier to remember everything that you have experienced during your next doctor's appointment!
Gabby (team member)thank you for this Gabby. I will have a look into it all now 😀
Hi. I'm in the same situation as you. I have been diagnosed with erythromelalgia and raynauds.
I was diagnosed with mixed connectuve tissues disease (MCTD) by my dermatologist 2 years ago, but I just went to the 1st rheumatologist appt 10 days ago and he did not agree with her MCTD diagnosis.
I've been having pain in my hands and wrists for a couple of months now, but this is not the first time, by any means. I've been wearing wrist supports that also brace my thumbs. The rheumatologist diagnosed me with osteo-arthritist in my thumb joints.
I've also had seizures in the past but none recently. I have reoccurring sores on my tongue, but none right now.
ANA keeps coming back negative. I haven't tested in a year tho. I now have a daily butterfly rash, so maybe the numbers will look different this time. But who knows. Im expecting the results to be ANA negative yet again and I'll probably be right back to square 1
Ugh it's exhausting but I've done everything I can possibly do.
I'll let u know what I find out.
I think we need to remember we are not alone. It helps to have someone understand this load-bearing journey. (My husband sure doesn't.), The diagnosis journey can be so long, complex and frustrating when it comes to lupus, or any autoimmune condition. We hear you. I hope your doctor is able to provide some clarity for you sooner rather than later! I'm sorry you husband isn't as understanding or supportive as you deserve and need right now. We are here to listen along the way. Sending gentle hugs,
Gabby (team member)
