I’m new here!
Hi, my name is Sians.
Hi, my name is Sians.
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.
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?
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.
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 ?
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
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
I’m currently in the diagnosis stage for bipolar though I’m 99% sure I have bipolar 2.
I’m having the worst mixed hypomania episode that I can remember. This is in combo with recent SLE dx and some autoimmune gut issues-likely IBS/Crohns.
I’m really feeling at my lowest. I’m scared to take my SLE meds because of my gut & liver issues. I’ve just been thugging it out through the the body aches & pain.
I haven’t talked about any of this with friends and family. I don’t feel safe being vulnerable to this degree. In the past, it’s been dismissed or I’ve been cut off or relied on someone not healthy for me.
Finally seeking treatment because I’m tired of hating myself, not trusting myself and having to trust someone else to care for me.
I’d like to be able to know if I having exaggerated feelings or if someone is actually being rude/cruel to me.
I’d like to be able to let someone know I’m having a Hypo episode and ask for what I need.
I’d like to be able to ask for help and not push it away.
My husband was salty to me tonight and I feel like he murdered my kittens. I dissociated and now I’m bouncing between guilt and rage.
I’m a mess. I know meds, treatment, therapy won’t change all of this but I’m hoping for some brighter days once I get the help I need. Thanks for coming to my pity party pep talk.
Hi, my name is Kimberlysuestephens. I'm here because I have SLE Lupus amongst other chronic illnesses. Always wanting to learn and support others.
#MightyTogether #Anxiety #Depression #BipolarDisorder #Migraine #Fibromyalgia #ADHD #RheumatoidArthritis #Grief