Hi, I have been having concerns for over a year about me having Lupus. I had a blood test last year which everything came back normal and the ANA was negative however I am experiencing more symptoms this year and I have taken another blood test and so far the bloods again are normal but I have currently been waiting a week a 2 days for the ANA result to come back. I’ve heard if it takes a while for this to come back it could mean it is positive and they have to do other tests on it.
I experience a butterfly rash, really bad raynauds in my feet, TMD in my jaw, aching joints and muscles even when I’ve not done much, restless legs, I was always ill when I was younger and was found to have cyclical vomiting syndrome, I have quite bad eczema on my shoulders which is scaley and have dry eyes. I also get dizzy quite a lot and find my joints are stiff when I don’t move them a lot, I am also very tired.
I just wanted to know if anyone with lupus had experienced any of these or think I have it as I am concerned and the not knowing is very worrying, thank you xx
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katiepops2004
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Hi KatiePops2004, sorry to hear of your troubles. I can relate to many of your symptoms, including joint pain, TMJ disorder, rashes (but different to eczema), and dizziness, and I have been diagnosed with lupus. The testing can take a while, especially as they like to repeat bloods a few times (due to the rate of false positives as well as false negatives). Try not to worry—they’re testing you, which means they’re investigating, which is great. Sometimes it takes a while to get clarity on the underlying cause of your symptoms, because they overlap with so many conditions, but the important thing is that someone is taking you seriously. Let us know how you get on 🌻🌈
Thank you 😊 this is not lupus related exactly but how do you manage your TMJ disorder symptoms, I’ve been diagnosed and had an xray but have no clue what to expect after this! If it’s physio or just medication or anything like that. I am only 19 so all of these health conditions are so new to me! Xx
Hi KatiePops, sorry to hear you are having such troubles at such a young age! The treatment depends on the type and severity of your TMJ problems. For me, they had trouble x-raying my TMJs because there was congenital deformities, as well as inflammation caused by the lupus. They ended up doing a ‘moving MRI’ which showed both joints were not only dislocated, but also completely devoid of bone marrow, meaning they were unable to heal themselves. Long story short: I need to replace both TMJs surgically.
I am currently facing the surgery, but prior to this point, I tried massage, chiropractic, physio, painkillers and wearing a custom-made occlusal splint at night to prevent me from grinding my teeth. The splint and physio improved my quality of life, but because my TMJs are disintegrating, surgery was always a matter of time.
Typically, specialists will try you on conservative measures first, with surgery as a last resort. Let us know how you get on!
Hello Katie, it took over 13 years for my ANA to show up positive. After years of suffering I was diagnosed with Fibromyalgia. Finally in 2012 I was diagnosed with Lupus ( +ANA) and I already had the Sjrogens marker. I’m African American and have dark pigment. My butterfly rash is very distinct. I also have significant pigment loss on my right side which made them start checking for Lupus all those years ago. Pain and discomfort seems to be my shadow. Warm baths are my friend.
Oh my god, I live in the bath, I fact I'm in one whilst writing this! Even though I know it will be short lived, that half an hour of joint pain relief is wonderful (I am starting to look like a prune thought 😀).
Aw sorry to hear that, I am not diagnosed I am only being investigated at the moment but baths help so much with the pain in my legs and feet I agree! Do you find though you get very hot in a bath more than the average person, I’m not sure if this is a lupus symptom or just me overthinking it xx
No butterfly rash as such, my face used to burn with very red cheeks even as a child. I sometimes think I was born with the lupus gene if thats possible or at least with immune system probs. My mother thought I was very healthy when in fact I didn't feel well.
I was in my late 50s by the time I got a diagnosis of SLE. Sent for a blood test by a locum gp and within 2 weeks it came back positive with an assurance it wasn't life threatening as I'd never heard of it, doc said it was mild.
Joint pain as I have osteoarthritis, I'm told it has nothing to do with Lupus. Fatigue was a big problem, Raynauds for most of my life, muscle aches and pains, feeling feverish, awful sweats especially in the night. Sjogrens came later with dryness, mouth ulcers and some difficulty in swallowing.
I was prescribed plaquenil for the Lupus used for malaria I believe, it took a while but the drug helped so much with signs and symptoms, its now stable. I hope you have a diagnosis soon and whatever you need to help xxx I'm 77 now.
hi! Sorry to hear that you are having all those symptoms... sometimes not knowing what you have can be discouraging, right? Hopefully they will find the disease soon.
As you may already know, lupus presents itself in a different manner to each individual and it can be confused with other diseases (and sometimes does not come alone!). A good experienced rheumatologist will know which other tests to do and if your symptoms match lupus. Hypothyroidism also causes me dry skin and feeling tired, I've read in this forum that it is not uncommon to have both. Have they tested you for hypothyroidism?
What you said about stiffness when you are not moving happens to me (I have SLE), it is specially bad during a flare. But when that happens my ANA is positive. Gentle movements, stretching, light yoga and physio-like exercises helps me, try to be soft and gentle with your body.
And don't give up on getting tested until they find the disease you have.
Here is a criteria for Lupus but if you ANA is not negative, adding points for each symptom:
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