Systemic Lupus Erythematosus

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Beyond fatigue

Hi everyone I was officially diagnosed with SLE Lupus in 2013 however was sick for years before being diagnosed as I'm sure many of you can understand. In the last year and a half I have become so fatigued that I literally sleep 18-20 hrs a day. Waking usually only when my Husband comes home from work and then awake for about 4 -5 HRS in the evening and still able to go to sleep at night. I'm just wondering if anyone else has delt with fatigue to this extent, and what their Drs have said about this. Mr Drs are currently just running blood tests for the second time before testing for "more rare things". I would really appreciate hearing people's comment's please

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I'm new here!

Hi, my name is terriebriant. I'm here because
I look for any information that can help me get through Lupus flares. I also need support from others who understand the struggle with SLE #MightyTogether #Lupus

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Loss of hearing with lupus SLE #Lupus #Fibromyalgia #ChronicFatigue #ChronicPain #HearingLoss #Tinnitus

I live with lupus and fibro and all the things that come with it. My life seems relatively "normal" although my mobility is 👇👇. Do you know that lupus can affect your hearing?? I researched and was shocked to find out it is true. I have had episodes of tinnitus and dealt with it by soft music.

I was recently diagnosed with severe hearing loss on my right side and mild loss on my left. Initially I thought it was tinnitus or wax. This was not the problem. Imagine my shock having to be fit with hearing aids; although I just shrugged and plodded along.

Have your hearing checked. This should be as compulsory as the eye checks if you use hydroxychloroquin.

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Bloody noses #Lupus #SystemicLupusErythematosus

Hi! I was diagnosed with SLE just over a month ago so I am still trying to figure out all this out. I get at least 3+ bloody noses a week. Is that part of Lupus? Does this happen to anyone else?

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I’m new here!

Hi, my name is BettyChase. I have recently been diagnosed with SLE, every day feels like a new set of symptoms/pains. I am just trying to get a better understanding of what is the disease, what are side effects from meds. sometimes I feel like it’s all in my head and I am manifesting things.

#MightyTogether

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I’m new here!

Hi, my name is Tracey. I am waiting on what autoimmune I have , he is thinking SLE. It started with sore hips so at my first appt he gave me cortisone injection it was like I lost twenty years I felt great , 3 days later I had tiny bruises all over my arms and legs, bruised easily, bp was at hypertension crisis unmanageable everyday, memory loss, forgetting where I was or how to do something as basic as opening a door ( only lasted a minute or two), and yesterday I said slipper in a sentence to my boss and he was like what? went to a chiropractor and he did a move to decompress my neck and a whole new wave of crazy symptoms .. has anyone ever heard of this ?

#MightyTogether #Lupus

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Needs to be said

It's been 3 years that I have not been able to work (or drive, so far) and at the beginning I was not adjusting well to the "new me" and frustrated that I was always exhausted. That word should scream: EXHAUSTED! It took me a while to realize this...

I have an invisible illness, a chronic illness. That means I cannot see or feel how hard my body is working on the inside to do the basic functions like, breath (important), pump oxygen to all my cells (important), metabolize (important), communicate (important). No wonder I am so tired. I am working extremely hard to do what I was taking for granted.

I gave myself permission to rest.

#ChronicFatigue #MentalHealth #ChronicIllness #MultipleAutoimmuneSyndrome #EhlersDanlosSyndrome #SystemicLupusErythematosus

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Is this Lupus or Something Else?

I just read a post where a member asked if a new set of symptoms were a part of Lupus. This is a concern for most of us. All too often I have asked my doctor this question with every new symptom. Each time I asked it was "no Lupus does not cause this" However, when I ask the Lupus community if they ever experience the same symptoms, it is a resounded yes. So is it coincidental or are doctors not fully aware of all the implications of Lupus? What do you think #isthislupus #thisislupus #SystemicLupusErythematosus

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