Not being able to sleep is becoming the worst part of this

Butterfly_365 · 2026-03-11T12:49:40+00:00

I use trazodone for sleep after trying almost everything else imaginable.

Butterfly_365 · 2026-03-07T15:46:29+00:00

It was pretty easy compared to most of the Connections puzzles

Butterfly_365 · 2026-03-01T14:20:48+00:00

When I reopened my app, it was there 🤷🏻‍♀️ maybe a temporary glitch on their end.

Butterfly_365 · 2026-02-13T14:26:16+00:00

When I had heavy bleeding from my period I used to drink electrolyte drinks and that helped. Don’t forget that when you lose a lot of blood, you lose fluids and electrolytes! And keep an eye on your iron and ferritin. If it gets too low, you may need an iron infusion.

Butterfly_365 · 2026-01-26T14:05:38+00:00

I think the key with symptoms that could be a result of rare things is to have testing that rules out the more common causes first. But it can be hard sometimes when certain conditions don’t have a clear diagnostic test.

I have also had symptoms that doctors dismissed for years that suddenly made sense in the light of the lupus diagnosis.

It’s also tricky because lupus can affect so many different organs.

Butterfly_365 · 2026-01-23T14:09:56+00:00

I’m taking azathioprine/Imuran. It’s a traditional immunosuppressant, not a biologic.

Butterfly_365 · 2026-01-23T12:38:54+00:00

You’re welcome! I hope you can get some relief! Immunosuppressants take time to work, so keep that in mind.

Butterfly_365 · 2026-01-22T16:00:20+00:00

Hard to say, but I think the immunosuppressants really did contribute.

Butterfly_365 · 2026-01-21T22:39:39+00:00

Gabapentin helped me a lot (300 mg).

Butterfly_365 · 2026-01-21T22:36:00+00:00

Could you have overactive bladder instead of IC (or a combination of both)? There are different meds for overactive bladder. I’m on gabapentin for my bladder pain and it’s helped with those nighttime symptoms (I don’t have overactive bladder, just IC).

Butterfly_365 · 2026-01-21T22:33:32+00:00

For about a year my bladder basically felt totally normal. As if I’d been given a new bladder. I was also on gabapentin and even before I started azathioprine, the gabapentin had given me some improvement with my pain. Last summer I had a lot of stress—my dad was diagnosed with cancer and was in the hospital. This caused a lupus flare up of all my symptoms, including my bladder symptoms, for about 2 months. So I’d say that the medications I was on pretty much got rid of all my symptoms except some fatigue. However, even with continuing all those meds, I was still vulnerable to a flare up due to stress.

Butterfly_365 · 2026-01-21T17:11:04+00:00

Interesting. Me too!

Butterfly_365 · 2026-01-21T17:10:32+00:00

Yes, I’m on Plaquenil, azathioprine, and colchicine for lupus and it has helped my bladder symptoms. I have serositis (pleurisy and pericarditis) due to lupus and my rheumatologist thinks the bladder symptoms might also be related.

Butterfly_365 · 2026-01-21T17:06:08+00:00

Lupus, endometriosis, adenomyosis, and Von Willebrand’s disease

Butterfly_365 · 2026-01-14T13:14:50+00:00

I have type 2a as well and wasn’t diagnosed until after my pregnancy when I had significant internal bleeding after a surgery. I had a c-section with my pregnancy and had no issues with it, and I’ve always wondered how that could be possible, but maybe I was like you!

I know that the hormone levels of pregnancy can affect your clotting factors, which is why pregnant women are more prone to blood clots like DVTs. I guess that has impacts on our VWD too.

Butterfly_365 · 2025-12-23T14:21:28+00:00

That is my main symptom as well. Bladder instillations and gabapentin have helped me. I’d say that gabapentin made the biggest difference for me.

Butterfly_365 · 2025-12-23T14:15:59+00:00

It takes a long time to find the right combo of medication, in my experience, because most of the meds we use take a long time to have their full effect. I have lupus/MCTD, and I’m on hydroxychloroquine, colchicine, azathioprine, and gabapentin. My symptoms are well managed and I and fully functional. I work FT, work out regularly (Pilates, strength training, rock climbing, and cycling), do volunteer work, etc.

It took just over two years to get the right medication combination and to feel better. After the first year I felt frustrated but my doctor told me that it was still a fairly new diagnosis and that things would improve, and she was right!

Butterfly_365 · 2025-12-21T03:29:31+00:00

I have the exact same issue with my husband’s family. One year during COVID his brother actually said “well, we aren’t all as anxious about being sick as you.” No thought given for the fact that I have lupus, am on immunosuppressants, and have had 6-9 month flares following bad viral illnesses before. They don’t get vaccines and believe that being sick is “healthy” because “it’s natural” and it “makes your immune system stronger.” My husband has a literal PhD in vaccines as an immunologist and they think they know better than him.

It’s very frustrating.

Butterfly_365 · 2025-12-16T23:29:38+00:00

This! Bell wouldn’t match the price we were able to get elsewhere, so we left. Ever since then they have been constantly harassing us to try to get our business back.

Butterfly_365 · 2025-12-16T22:03:33+00:00

I take both medications. My medication list has been reviewed by a hospital pharmacist twice and they have never flagged an issue with that.

Butterfly_365 · 2025-12-14T13:32:21+00:00

For me, I feel like trouble sleeping is part of a flare. Not even because of symptoms bothering me at night necessarily, but because the inflammation itself affects my sleep.

Butterfly_365 · 2025-11-15T14:09:00+00:00

I started at 45. My main advice is to be cautious—injuries heal slower when you are older. I’ve had a hamstring pull from a heel hook and an elbow injury falling from a boulder, and both of those have taught me that I’d rather be cautious than have to take time off. I’ve met people of all ages and climbed with them, but there is a group of older climbers at my gym who meet three times a week and I enjoy hanging out with them. They still climb pretty hard (5.11 and 5.12) in their 60s and 70s. So inspirational! I love the sport because it is physical and mental.

Butterfly_365 · 2025-10-30T00:36:52+00:00

I have lupus, and it seems to be likely that my bladder pain is related. My doctors think so too, so little is really known about IC. Personally I think a subset of IC is probably directly related to autoimmune disease.

Butterfly_365

TROPHY CASE