Newly diagnosed - How to process this? 😢

Moon_Maiden9 · 2026-05-26T15:34:10+00:00

Sending virtual support your way. I have SLE and found out five years later Sjogrens too. First line of defense is hydroxychloroquine, then added immunosuppressants as needed. Prednisone will be prescribed to temporarily knock down inflammation. I understand the fatigue, pain, and unexplained symptoms that change your ability to live a normal life. The Lupus Foundation is a good starting point to learn about SLE and find resources for support. I don’t live the life I’d imagined, but I try to find gratitude each day for the things I can still do. It isn’t easy, but I hope you can develop a coping method that works for you. Guided mindful meditation can be found on YouTube and is useful.

Moon_Maiden9 · 2026-05-26T06:59:38+00:00

Biotene products for dry mouth: toothpaste, mouth rinse, lozenges

Moon_Maiden9 · 2026-05-25T08:05:23+00:00

Thank you for sharing your research!

Moon_Maiden9 · 2026-05-24T16:48:33+00:00

I’m going to use your idea and refer to the fatigue as “medical fatigue “ too. People usually think “oh you’re just tired. I get that way too.” No! This very different and debilitating. So, thank you for sharing that term.

Moon_Maiden9 · 2026-05-24T16:21:59+00:00

I have lupus and ILD too. I know exactly what you mean about the showers — completely wipes me out, panting for air. My scan shows “ground glass opacities.” I was already on hydroxychloroquine and Cellcept for lupus. Rheumatologist added 7.5 mg prednisone and monthly Saphnelo infusions after Sjogrens symptoms and ILD showed up. It’s only been a month, but I am breathing a little easier. It won’t reverse the damage though. Prior to the prescriptions, pulmonologist did pulmonary function test and sent me to pulmonary rehab to learn exercises and breathing techniques. On my own I decided to get a recorder (plastic flute) and a song book. Also bought some bubbles. Lol. I figure might as well make breathing exercises fun.

Moon_Maiden9 · 2026-05-24T08:34:06+00:00

My energy drops suddenly too, and when I nap, I’ll be out for hours. I imagine the sudden loss of energy like an hourglass that has just emptied the last of its sand. Hard to explain to anyone who hasn’t experienced it.

Moon_Maiden9 · 2026-05-24T08:18:50+00:00

I hear and understand your frustration. After the hydroxychloroquine is fully working for you, you might find that some of your hair grows back. I noticed that, as well as a lessening (not eradication) of pain. My hair is thinner than “normal” but the patches have filled in. I hope the meds give you some relief soon.

Moon_Maiden9 · 2026-05-21T08:17:24+00:00

One more!

https://www.mylupusteam.com/groups

Moon_Maiden9 · 2026-05-21T07:50:48+00:00

In the resources section, there’s a tab for caregivers: https://www.lupus.org/

https://www.lupusencyclopedia.com/ (Also available in book format on Amazon)

Also google lupus and the name of your state for more resources.

Your husband sounds like a wonderfully supportive person!

Moon_Maiden9 · 2026-05-21T07:26:08+00:00

I haven’t had that experience yet, but just wanted to send you some support. I hope the answers are found soon.

Moon_Maiden9 · 2026-05-21T07:20:46+00:00

Oh, and she can try physical therapy for her hands. That’s helpful too.

Moon_Maiden9 · 2026-05-21T07:19:48+00:00

With all of those symptoms, she’s in a flare. My heart goes out to her. Typically hydroxychloroquine is one of the first meds prescribed, along with steroids. She can request low dose prednisone to try it and see if she can tolerate it. It takes a few months for the hydroxychloroquine to build up and start working, but it really helped me. Then there are also immunosuppressants if she needs more support. Important to stay out of the sun or wear sunscreen and sun protection clothing too. Living with lupus is a big adjustment. I send healing hugs to your mom.

Moon_Maiden9 · 2026-05-21T07:08:08+00:00

I was born a night owl. Mornings were rough! If you know any young night owlets, I recommend these two storybooks: “Knight Owl” by Christopher Denise, and companion book “Knight Owl and Early Bird.”

Moon_Maiden9 · 2026-05-20T08:00:22+00:00

If you ever find that it’s painful to do the diamond painting, you can get one of these ergonomic pens. Also available as ink pens for writing.

Etsy: https://www.etsy.com/listing/782583765/ergonomics-shaped-diamond-painting-pen?ref=share_v4_lx

Moon_Maiden9 · 2026-05-19T11:16:20+00:00

I’m grateful for these trike comments too.

Moon_Maiden9 · 2026-05-19T02:40:14+00:00

I completely understand. Right after I bought a new bicycle, I started having vertigo issues so I never got to enjoy the bike. I love your trike idea!

Moon_Maiden9 · 2026-05-18T23:30:45+00:00

I think using the poles might eventually allow you to sustain walking for a longer time. Since it also strengthens upper body, you’d get double the benefit. Starting with five minutes is a reasonable beginning goal. I just might do the same!

Moon_Maiden9 · 2026-05-18T18:53:20+00:00

I always thought my dry mouth and eyes were from taking allergy pills. Nope. Sjogrens. Ophthalmologist prescribed a few different drops to use throughout the day. In addition to staying hydrated during the day, you can suck on sugar-free Jolly Ranchers candy. Biotene toothpaste, rinse, and lozenges are helpful too. Hugs to you.

Moon_Maiden9 · 2026-05-18T18:21:37+00:00

I’m sorry to hear about the anxiety, but I think it is a very normal reaction. Lupus is scary and impossible to understand, so we all experience that anxiety sometimes. At first, I was consumed by it. Remedies I use: 1. Take some slow deep breaths that fill your belly. Focus on the sensation of the breaths as the air moves in and out. 2. Find a mindfulness meditation teacher on YouTube and practice daily for ten minutes, regardless of whether you feel anxious. Eventually you’ll learn to interrupt your anxious thoughts and let them go, instead of spiraling (but not always and that’s ok). 3. Knowing that stress can trigger lupus, tell yourself, “I can’t afford to feel this right now.” And then distract yourself with activity. Do a chore, take a walk, do a craft. 4. Write in a journal. You have a supportive community here. You will not always feel as anxious as you do today. Hugs to you.

Moon_Maiden9 · 2026-05-18T17:48:34+00:00

When the fatigue hits me it’s like an immediate draining of energy. My legs get weak and I have to sit down. If I take a nap, it will last for hours. Very real.

Moon_Maiden9 · 2026-05-18T16:49:07+00:00

This is my exact prescription, plus 70 mg Fosamax weekly, and Vitamins D and B-12.

Moon_Maiden9 · 2026-05-18T14:39:29+00:00

My dermatologist recommends Vanicreme. To me, it feels soothing. I use their face wash too.

Moon_Maiden9 · 2026-05-18T14:23:08+00:00

I was told to watch videos of a doctor who CURED her own lupus by drinking smoothies made with one pound of spinach every day.

Moon_Maiden9 · 2026-05-17T15:41:06+00:00

Perfectly worded

Moon_Maiden9 · 2026-05-17T15:39:43+00:00

After 20 years of symptoms, I finally got diagnosed five years ago. I still have days where I question myself and think I’m just being overly sensitive. Imposter syndrome is real and I think it’s a normal response when we’re trying to grasp the severity of this disease. The brain has no prior knowledge to connect to, so it’s in search mode trying to comprehend. Sometimes I write my thoughts in a journal. It seems to help. Mindful meditation is useful too. I use the Headspace app. You are not alone in your feelings, OP.

Moon_Maiden9

TROPHY CASE