u/OkIntroduction7560

Has anyone else had LDN make them more sleepy and foggy headed? I recently started taking it and I’m not sure if there’s an adjustment period or if I should be doing something differently. I’d normally message my rheum, but he changed clinics so I’m between providers at the moment.

I first took my dose during the day and I felt out of it all day, except for like 45 mins where I felt really good. I’ve been taking it at night now, which seems fine, but I end up sleeping until like 2pm and still feel groggy all day. It feels like I’m taking a big dose of Benadryl or cold medicine. Is this normal? Everything I read has been the opposite, people saying they’re energized and can’t sleep.

I also have ADHD, not sure if that could have anything to do with it. I take adderall, bupropion, and HCQ during the day. I took my adderall a couple hours ago, hoping to do some studying, but my head still feels like a balloon and I can’t focus at all.

Has anyone experienced something similar with LDN and did it get better? I’m really hoping this medication can help me, but I can’t get through my days like this.

Between the stress of finals and missing a couple weeks of HCQ, I landed myself in a pretty severe flare. My worst symptoms are fatigue, brain fog, joint pain, and muscle weakness/fatigue. I thought I was on the upswing after sleeping for like two days straight, but then my hip decided to pop out of its freakin joint yesterday. It was more than unpleasant, but I was able to pop it back in myself. I’m super sore today: hip, knee, butt, calf, the works.

I might be wrong connecting the flare and subluxation, the timing could be coincidental, but it certainly feels connected. Has anyone else experienced this?? I was also diagnosed with “benign hypermobility syndrome,” which could be a factor.

I just find myself getting soo frustrated with this disease’s propensity to “kick you when you’re down.” I’m also getting increasingly worried that I could have something else going on. My grandmother had myasthenia gravis, so I get a bit anxious that I could be developing a type of myopathy or something.

I’m going to message my rheum and I already have an appointment in a couple weeks. He’s giving me a referral for PT, so hopefully that will fix it.

But, hot diggity damn does this shit suck.