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797d

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

Top reply
    • squiggly

      787d

      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

    • squiggly

      787d

      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

    • ThisIsFine

      789d

      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.

    • squiggly

      789d

      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.

    • ThisIsFine

      789d

      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.

    • karinad

      789d

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

    • squiggly

      790d

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

    • squiggly

      791d

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

    • Margard

      791d

      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

    • squiggly

      791d

      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.

    • Misotherat

      792d

      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.

    • squiggly

      795d

      Message me or the other person?

    • ghoulpod

      796d

      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.

    • karinad

      796d

      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

    • Soap_On_A_Rope

      796d

      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

    • squiggly

      797d

      Ok

    • squiggly

      797d

      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:(

    • karinad

      797d

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

    • karinad

      797d

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

    • squiggly

      797d

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

    • karinad

      797d

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

    • karinad

      797d

      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.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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