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squiggly

Updated 10mo ago

Struggling with Energy Levels After Autoimmune Diagnosis

does anyone have a problem with energy levels? I got diagnosed five and a half months ago and I was out on plaquenil and predison. I only take plaquenil now but I'm having a hard time falling asleep and staying asleep and now I have been getting yelled at work because I'm moving to slow. I eat breakfast before I go in and it doesn't help and even when I get at least seven hours of sleep in I still have no energy. any advice please

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karinad

2y

I'm definitely struggling with fatigue. If you feel comfortable sharing, you should let your supervisor know about your situation because many countries' laws protect you from their ableism.
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karinad

2y

As in, in the US it is illegal for them to scream at you for that
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squiggly

2y

Thanks. My sister told me that I have to let her know too.
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karinad

2y

You don't *have* to, but it might help
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karinad

2y

And if they retaliate (fire you, lower your pay, etc.) you can sue
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squiggly

2y

Yesterday one of the co-workers was getting pizza for us and I was going to go in and get some but right before I went in I heard them laughing and making jokes about how slow I am and other stuff. It truthfully made me mad and sad cause I'm trying my hardest everyday not to fall on my face. it just sucks. I been told my doctor's about this problem but they're just concerned about the lupus symptoms:(
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squiggly

2y

Ok
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Soap_On_A_Rope

2y

I struggle with energy just from Lupus in general. I don’t think the Plaquenil has an impact. I take Vyvanse for ADHD which helps with energy. I have a hard time winding down at night
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karinad

2y

Okay, yeah that's not acceptable. Like, literally illegal. Do you want to DM me about it with more details? Like, the size of the organization, your role, location, etc
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ghoulpod

2y

Yeah the fatigue is the main reason I use a wheelchair the majority of the time I leave the house. I'm also on plaquenil but all it's done is lessen the frequency of my flares.
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squiggly

2y

Message me or the other person?
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Misotherat

2y

The fatigue has been SOO bad for me. I was falling asleep while driving 😥 I started taking Modafinil to help keep me awake during the day.
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squiggly

2y

I just don't know what else to try. Also my body becomes itchy the whole day. It's not like I need lotion cause I put it on and try showers too and it doesn't help.
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Margard

2y

I struggle with energy, I’m always fatigued and I don’t sleep, have never really slept well. I don’t take plaquenil or anything for lupus anymore. It’s not illegal for your employer to “yell” at you for fatigue, but it would be illegal for them to fire you for a disability, that goes against ADA. If you have the ability to file for FMLA, I would do so. My doctor suggested dextromehtrophan which is used as a cough suppressant to help with me hitting a wall at the end of day. Plaquenil takes months to work and the fatigue is usually last to be fixed. Try drinking lots of water, try drinking tea with mushroom powder in it as well
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squiggly

2y

Thanks I'm going to look into the tea first.
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squiggly

2y

I don't qualify for FMLA. I just started this job January 10 of this year
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karinad

2y

It absolutely is illegal for them to discriminate and verbally abuse you for being disabled.
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ThisIsFine

2y

Consider trying a Fitbit to see the quality of your sleep. With mine I found out when I thought I was sleeping 7+ hrs it was more like 4-5 because I was waking up a lot. I also believe you can catch up on sleep some, nap when you can. Lots of water, eat healthy. A job where you're rushing around could very well be fatiguing you. As for mean coworkers, honestly I just make fun of myself right along with them. It puts the control back in my hands. Don't give them the satisfaction of riling you up, just laugh at em.
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squiggly

2y

I might consider a fit bit. Also I'm no sure if I have lupus. At first the meds were working but I'm almost at my six month mark.(they told me it normally takes six to eighteen months for my body to become normal again). I've been taking my meds and doing everything they tell me to do but it's like my symptoms are slowly coming back.
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ThisIsFine

2y

The meds aren't perfect unfortunately. I've been diagnosed for a little over a year and my meds are definitely not dialed in yet. You can still have flare ups even when well managed.
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squiggly

2y

This sucks. I don't qualify for Medicaid. They keep saying I exceeded the income limit but I only made 934 one time and that was at my last job. I'm now working on a hospital and I make 277 every week and they're still saying I make to much. I still pay for my meds. I have medical bills from 7 different places from 1 grand up to 5 grand I'm getting overwhelmed with All this

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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