Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hello Everyone,
I am new to this group and was hoping I could get some advice on exploring Lupus with my rheumatologist. I am seeing a new one in a couple of weeks. The last one I saw did not seem interested in exploring any possibilities aside from a fibromyalgia diagnosis despite my unexplained elevated ANA levels. I tested negative for all the other blood tests for lupus, RA, sjogrens, etc. but I had my ANA titers tested twice in the last 6 months and both times they came back as positive homogeneous 1:360. I know there can be false positives but with levels that high and the other symptoms I have, I find it hard to believe that it's nothing. I know someone with siginificant RA and another with lupus and they both always test negatively on blood tests. I do believe I have fibromyalgia but I feel like there is something else going on as well.
Do you all have any advice on pushing the rheumy when they are dismissive? I hope this next one will not be, but I want to be prepared because I don't want to have to wait another 4 months to get another appointment. I have been through every specialist and test under the sun over the last few years only to be told how dang healthy I am (GEE THANKS).
Are there other tests that can be done to diagnose lupus or mixed connective tissue besides just the blood tests? I have experienced: mild unexplained rash across cheeks (which looks like malar to me but the last rheumy wasn't convinced), severe sun sensitivity, abdominal pain with and without GI issues, frequent arthritic-like pain and achiness in knees and one knee started popping and grinding with movement a couple years ago (no injury or anything that I can recall to have caused it), achy and sore wrists and fingers, weakness and decline in muscle strength (especially in my hands, they get tired and sore just from digging around in my bag for a pen), drop things frequently, sudden new headaches (in temples mostly), vertigo and dizziness, utter exhaustion, flu-like aches that come and go over entire body, occasional low-grade fevers for no reason, decline in appetite, frequent dry and sore throat, dry eyes, an unquenchable thirst, lymph nodes in neck that have been swollen for 2 years, severe lower back and pelvic pain, heart beat irregularities, increased breathing trouble and chest pain sometimes with deep breaths (despite my asthma testing as very mild), swelling and itching of lower legs, can't remember the last time I slept through the night, and others I can't recall at the moment (oh yeah, and difficulty concentrating and memory haha).
Anyway, thank you so much for reading and any advice you may have. I have been keeping a symptom journal since a few days ago and will bring that with me as well.
I hope you all are well and thank you for taking the time to read my story!
-S
It wearing makeup is a great idea, I have taken photos but the last rheum just said "hmm it's hard to tell" but to me it seemed glaringly obvious!
I also run a low temperature, my normal is around 97.9 so when I'm at 99 or above I'm told it's totally normal but it's definitely high for me. I actually recently got this cool smart thermometer that plugs into my phone. You use it with an app and you can record your temperature readings and coinciding symptoms.
Sounds like you've been through as many incompetent docs as me. I can't believe he told you you were just getting old! What an idiot! Especially since you are obviously very active. Ugh. And yeah I feel like most docs think you can pop OTC painkillers like candy but they can be super dangerous too if you take them all the time. They can certainly interact with other meds as well.
Thank you for the well wishes. I wish you luck on your journey as well, I hope you are able to get some competent care and feel better! We are not alone!
Thank you for your words and wishes, I wish the appointment was here already.
I have been insanely busy at my full time job and I am in school working on a second degree right now as well. There is a bunch of stress at home as well with a new house and my husband getting badly injured recently. On top of all of that I am just so sick of being sick and I can hardly concentrate on anything because I spend so much mental energy just thinking about my health. I am scared of receiving an autoimmune diagnosis, but I am just as scared of receiving no diagnosis. I just need to know what's going on with me and hopefully find some way to treat it... or at least the symptoms. I'm ready to just live my life again.
Thanks for putting up with the rant. I've just been feeling incredibly distressed, depressed, and lonely about all of this lately. It's exhausting enough just to get out of bed much less get through my day and complete a night of studying after that. I feel like everyone at work must think I'm a total drag or just a jerk because I hardly even smile anymore. It takes too much energy haha. I had enough of an RBF before all of this started.
Anyway, my textbook is calling me now... gotta get to it before I fall asleep sitting up. Thanks for all the encouragement and for listening (or reading...) Best to you guys, hope you are having a good day and feeling well!