Systemic Lupus Erythematosus

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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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Venting…

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.

#Bipolar2 #SystemicLupusErythematosus

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Grieving what will never be.

I’m so tired. I found out a few days ago that I cannot have children, I cannot get pregnant and carry a baby to term, let alone safely.
I have Lupus nephritis- lupus in my kidneys. I have anti-phospholipid antibodies syndrome, infertility is a major symptom of this condition too.
You kind of need healthy, functional kidneys to have a baby, and have blood that functions normally or at least efficiently enough- to carry a baby. I have neither.
People have been telling me “well you can always adopt!” But that’s not the point. Besides, I was adopted when I was a baby. I’ve battled with the difficulty of being adopted- I couldn’t adopt a kid to build my family as I couldn’t help them cope with their experiences when I can barely do the same for myself.
It doesn’t replace the fact that I feel so empty, knowing that I should be able to have a pregnancy. Every other woman on the planet is able to have a baby. Almost every woman on this planet has functioning organs and blood at the very least. I feel like I have failed in every single aspect of life a human could fail in. And on another stupid note, who on earth would want to marry an infertile, chronically ill, medically fragile women?! No one. Or at least not anyone who would fit my standards of basic human decency. I’ve been too disappointed by men who’ve tried to take advantage of me for those reasons.
I’m broken on a cellular level, my organs are broken, my mental health is broken… and now the one thing I was counting on, to complete in my life as a women? I am broken there too. I’m a failure of a woman, and a human. How do you move on in life when your future is wrecked in every single way possible, and it’s set in stone? Every option is awful and I’m so so tired of all of this. #Lupus #LupusNephritis #SystemicLupus #AntiphospholipidSyndrome #Infertility #autoimune #Vasculitis #MentalHealth #Anxiety #Depression #PTSD #Grief #advisemeplease

(edited)
23 reactions 8 comments
Post

Grieving what will never be.

I’m so tired. I found out a few days ago that I cannot have children, I cannot get pregnant and carry a baby to term, let alone safely.
I have Lupus nephritis- lupus in my kidneys. I have anti-phospholipid antibodies syndrome, infertility is a major symptom of this condition too.
You kind of need healthy, functional kidneys to have a baby, and have blood that functions normally or at least efficiently enough- to carry a baby. I have neither.
People have been telling me “well you can always adopt!” But that’s not the point. Besides, I was adopted when I was a baby. I’ve battled with the difficulty of being adopted- I couldn’t adopt a kid to build my family as I couldn’t help them cope with their experiences when I can barely do the same for myself.
It doesn’t replace the fact that I feel so empty, knowing that I should be able to have a pregnancy. Every other woman on the planet is able to have a baby. Almost every woman on this planet has functioning organs and blood at the very least. I feel like I have failed in every single aspect of life a human could fail in. And on another stupid note, who on earth would want to marry an infertile, chronically ill, medically fragile women?! No one. Or at least not anyone who would fit my standards of basic human decency. I’ve been too disappointed by men who’ve tried to take advantage of me for those reasons.
I’m broken on a cellular level, my organs are broken, my mental health is broken… and now the one thing I was counting on, to complete in my life as a women? I am broken there too. I’m a failure of a woman, and a human. How do you move on in life when your future is wrecked in every single way possible, and it’s set in stone? Every option is awful and I’m so so tired of all of this. #Lupus #LupusNephritis #SystemicLupus #AntiphospholipidSyndrome #Infertility #autoimune #Vasculitis #MentalHealth #Anxiety #Depression #PTSD #Grief #advisemeplease

(edited)
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SLE lupus & Elevated Chloride levels

Should I be concerned that my chloride levels have been consistently elevated & increasing since December, 2022? Can anyone tell me what this might mean? #SystemicLupusErythematosus #Lupus

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I hate prednisone

So I was on a pretty heafty dose of prednisone last year during the summer die to my Lupus. I had very limited mobility and it was overall a pretty terrible experience.
Anyway- I ended up gaining a lot of weight very quickly, and it’s become very difficult to loose.

I used to be 190LBS, I’m 5’6, with broad shoulders. So I looked pretty healthy, and I was very confident and proud of myself!

But because of my Lupus and medications like prednisone, I’m now 235LBS and I just feel awful. It seems like the prednisone has made it so much harder to loose weight., even thought I have stoped taking it months ago!
I’ve been dealing with depression and anxiety, as well as overall crippling fatigue- people, including doctors- keep telling me “just get moving! Go on walks! Eat healthy! Don’t eat processed foods!” But they seem to forget I struggle with chronic pain, horrible fatigue, exercise and heat intolerance and an overall lack of good days.

So how on earth am I supposed to loose weight? So I can feel better about myself again? I’m loosing hope with it, and I just feel so lost and lonely and exhausted. I’m not flailing anymore,so why do I feel so bad?

Chronic illness is becoming too much for me.
#Lupus #LupusNephritis #SystemicLupus #SystemicLupusErythematosus #ChronicFatigue #ChronicPain #KidneyDisease #AntiphospholipidSyndrome #Vasculitis #Depression #Anxiety #Prednisone #CheckInWithMe #PTSD

39 reactions 8 comments
Post

I hate prednisone

So I was on a pretty heafty dose of prednisone last year during the summer die to my Lupus. I had very limited mobility and it was overall a pretty terrible experience.
Anyway- I ended up gaining a lot of weight very quickly, and it’s become very difficult to loose.

I used to be 190LBS, I’m 5’6, with broad shoulders. So I looked pretty healthy, and I was very confident and proud of myself!

But because of my Lupus and medications like prednisone, I’m now 235LBS and I just feel awful. It seems like the prednisone has made it so much harder to loose weight., even thought I have stoped taking it months ago!
I’ve been dealing with depression and anxiety, as well as overall crippling fatigue- people, including doctors- keep telling me “just get moving! Go on walks! Eat healthy! Don’t eat processed foods!” But they seem to forget I struggle with chronic pain, horrible fatigue, exercise and heat intolerance and an overall lack of good days.

So how on earth am I supposed to loose weight? So I can feel better about myself again? I’m loosing hope with it, and I just feel so lost and lonely and exhausted. I’m not flailing anymore,so why do I feel so bad?

Chronic illness is becoming too much for me.
#Lupus #LupusNephritis #SystemicLupus #SystemicLupusErythematosus #ChronicFatigue #ChronicPain #KidneyDisease #AntiphospholipidSyndrome #Vasculitis #Depression #Anxiety #Prednisone #CheckInWithMe #PTSD

39 reactions 8 comments