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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLupusTeam Member asked a question 💭
Baltimore, MD

Also, how do you identify when youre experiencing a flare/have gone into remission? I was recently diagnosed after having positive blood tests, though I have had symptoms for years. I think I may be experiencing a flare now because of my intense fatigue, joint pain, headaches, etc. My anxiety has also gotten to the point where I am involuntarily twitching, having hot flashes, and shaking constantly. I have my first rheumatologist appointment in a few weeks, but in the mean time does anyone have… read more

May 20, 2018
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A MyLupusTeam Member

Are you sure its anxiety? There are so many unusual symptoms, those may be symptoms of Lupus. I was diagnosed with Lupus/Sjogrens last year and have been taking 200-400mg Plaquinil which really has helped!
I get a full body twitching sometimes before going to sleep. Also hot flashes, but more often cold chills, uneven body temp. And I get a type of trembling that many who have Lupus call internal trembling. My hands do not shake but I feel kind of shakey inside. I am not having anxiety when these things happen. But I can calm the symptoms down by doing something different, getting off the computer/TV screens, etc.
I have symptoms of CNS central nervous system Lupus. Another symptom that is very annoying is peripheral neuropathy, which for me is like a prickly skin feeling from head to toe. Everyone seems to have different symptoms! Hope you have a good visit with your rheumy!

May 20, 2018
A MyLupusTeam Member

Thank you for sharing poseymint, I don't have anxiety symptoms but I do suffer from some of the symptoms you explained and I need to mention them to my rheumatologist on my next visit. I have Lupus/Sjorgrens too and I am on Plaquinil 200 mg twice daily. I have been having twitching but never related it to the lupus, also I do get tremors if I am working on a project for any length of time, I have to walk away and give myself a rest although what I am doing relaxes me, I suppose to my muscles and joints, etc it must be tedious. I have also experienced the internal trembling and that can be worrisom, because you whole body internally is trembling and seems nothing can calm it. My body temperature also is uneven, I am either cold or hot rarely ever comfortable. Poseymint your post has been very imformative I love this site for this very reason of us affected being able to share and help each other.

May 20, 2018
A MyLupusTeam Member

Absolutely. I have these same symptoms. The twitchinf freaked me out so bad it even doubled my anxiety lol ! Theh even tested me for MS due to numbness and tingling. It sure takes the energy our of you when your anxiety is through the roof AND you’re in a flare. I’m still learning different tricks to calm mine myself, just wanted to tell you that you aren’t alone ! My prayers are with you❤️

May 20, 2018
A MyLupusTeam Member

Haaaly,
Each person experiences flares differently, and sometimes your flares can vary in symptoms each time you have a flare eventually you will learn your body and when something is off. But generally fatigue is poignant sign, and best advice I can give you when your body tells you to rest it is very important you listen and give your body rest! It really does make a huge difference!

May 20, 2018
A MyLupusTeam Member

More pain definitely causes more anxiety for me. Whether it's a migraine coming on or a different pain, sometimes I notice the anxiety before I notice that my pain is higher than usual.

May 20, 2018

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