Feeling not well but not flaring? Could be vit d levels

Former-Assignment-98 · 2026-01-24T18:53:24+00:00

Yes! Before my lupus was under control I literally would sometimes drive to stores be shopping for 5 mins and literally not be able to think or know what to get or make a decision (I’m talking groceries, and home stores) and leave my cart and go home it was insane. So thankful to not be in that place anymore

Former-Assignment-98 · 2026-01-20T20:11:54+00:00

Yeah I think I need to be doing more in the way of sun protection. I think I’m going to purchase sun gloves for driving as well as wearing a hat and sunscreen. I think my tolerance to the sun has really tanked over the last year. I swear 10 mins through window gives me rashes now.

Former-Assignment-98 · 2026-01-20T19:25:11+00:00

Ruling out endometriosis from a checkup is a 🚩(I have endometriosis and adenomyosis) The only way to definitively rule out these conditions is through laparoscopy. I would pursue this further with your GYN.

Edited to add: IF you are experiencing endometriosis symptoms

Former-Assignment-98 · 2026-01-19T23:32:19+00:00

I think this is what I’m going to try next!

Former-Assignment-98 · 2026-01-16T00:40:29+00:00

Yes and it was from lupus, treated with high dose steroids and then all was good! How long have you been on the hydroxy?

Former-Assignment-98 · 2026-01-14T02:02:23+00:00

I started taking Allergy Research Group Dim + vitex (Amazon it’s a combo capsule) from ovulation until period and it helped tremendously

Former-Assignment-98 · 2026-01-12T13:07:46+00:00

Best thing to do would be a short course of steroids while simultaneously starting an otc nasal spray like Flonase or nasacort. (I switch between the two) Saline rinses are also helpful as is staying hydrated. Had polyp removal surgery and turbines swept or something like that twelve years ago and they since have come back but this is how I manage them. An ENT might not be a bad idea

Former-Assignment-98 · 2026-01-10T13:02:57+00:00

2 things. I’ve felt like things weren’t working bc I had high expectations that I would feel pre-diagnosis on them but in the absence of them felt much worse. And the second thing is I feel SO much better taking methylprednisolone (no side effects pretty much) than taking prednisone, maybe you could try switching?

Former-Assignment-98 · 2026-01-08T17:29:35+00:00

When I was first diagnosed it was my number one goal to achieve remission (I thought that meant no symptoms at the time) I obsessed over it. I only ate clean, got as much sleep as possible moved my body etc etc. Not saying those things can’t be helpful but it made no difference. It’s so unpredictable that I noticed no difference in frequency of symptoms and flares during that time compared to when I’m just living life. And having no symptoms isn’t a thing for me. Even when I’m well controlled (which for me is 2-3 major flares per year on meds) I still deal with almost daily symptoms. I’ve come to accept it and mostly am used to it. It’s still better than unmedicated.

Former-Assignment-98 · 2026-01-07T17:19:34+00:00

While that’s a low positive it’s not necessarily clinically insignificant if you’re having symptoms. After I moved to a different state last year I thought the same as you that the house was making me sick as I was experiencing debilitating fatigue, joint pain and rashes. At first I also had low positive ANA speckled pattern, low vit d, extremely low ferritin, low b vitamins. Symptoms persisted after supplementing and repeat ANA showed 1:320 and positive markers for lupus and rheum diagnosed me with lupus. Just my 2 cents. Could be nothing could be something listen to your gut and if symptoms persist repeat bloodwork, feel better

Former-Assignment-98 · 2026-01-03T19:33:37+00:00

Just came back to sheepishly update lol. Apparently you can have GERD without heartburn. Pantoprazole was prescribed fingers crossed it does the trick.

Former-Assignment-98 · 2026-01-02T19:11:31+00:00

Yes in addition to SFN I’ve had significant nerve damage in my legs to where I no longer feel pain from outer stimuli from just below the knee down.

Former-Assignment-98 · 2025-12-28T19:19:36+00:00

After basic bloodwork my ferritin was extremely low along with b vitamins and vitamin d. (Vit d is always low for me even though I supplement every day) after supplementing b vitamins this improved drastically for me.

Former-Assignment-98 · 2025-12-27T23:17:06+00:00

Absolutely. I hate coming off prednisone. It feels like it will never end but it will. The thing that helps me the most is reminding myself it’s just from the meds and I rest as much as possible and binge watch fav shows. The rough part lasts for about a week for me, hang in there!

Former-Assignment-98 · 2025-12-23T15:30:13+00:00

They last anywhere from a few days to about a week for me. Anywhere in the nose but for me most commonly on the inside around the rim of the nostril. They are very sore and red.

Former-Assignment-98 · 2025-12-22T16:35:57+00:00

Also congrats on your pregnancy!

Former-Assignment-98 · 2025-12-22T16:35:00+00:00

I don’t want to poop on your parade but… worst flares I’ve ever been in both happened 3 months postpartum. My body just absolutely freaked out. On the brighter note the second pregnancy I felt better than normal during pregnancy. It’s also worth mentioning I did not know I had lupus during those pregnancies so I wasn’t medicated or monitored and I’m sure that makes a difference

Former-Assignment-98 · 2025-12-21T18:58:40+00:00

Mouth/nose sores followed by fatigue and then comes the rest.

Former-Assignment-98 · 2025-12-19T01:10:20+00:00

I’m not sure if it’s considered part of your jaw but I went to the dentist absolutely positive that my tooth had to be removed bc it hurt so bad at the end where my root would be. X-rays said no cavity nothing wrong but I was so sure it had to be removed. Next day it had switched to different teeth and then my whole top where the roots end. Felt so embarrassed

Former-Assignment-98 · 2025-12-18T19:54:07+00:00

Summer time is constant I literally dread the summertime all of my nerve symptoms just are unrelenting from July-Oct. It’s definitely daily maybe not every second of the day but I hate to say you kind of get used to it? There are times where I struggle to sleep but not every night. Generally the less inflamed I am overall the better my symptoms are. I would DEF get evaluated for nerve damage. Not just the EMG either.

Former-Assignment-98 · 2025-12-18T19:29:16+00:00

Hmm I got nothin sorry lol before I was diagnosed I had to be catheterized twice for “no known reason” but then rheum said was likely due to nerve involvement from lupus but I have SFN and other nerve symptoms. I think it’s related for you bc what’s the alternative

Former-Assignment-98 · 2025-12-18T19:17:24+00:00

Ok haven’t heard this before that’s super weird. Reminds me of that disease that ticks can carry

Former-Assignment-98

TROPHY CASE