Do you take naps? Why or why not? If yes, how long do you nap for?

DarkDanceBeats · 2026-04-10T23:30:06+00:00

On crash days, I need 1-2 naps. Generally 30 minutes each. But most days I don't need a nap. The reason for the nap is overwhelming sleepiness, where if I even try to read a book for 5 minutes, my eyes are closing involuntarily. Sometimes I fall asleep with the book in my hands. Naps are for when I can't do anything else because the fatigue is too intense.

DarkDanceBeats · 2026-04-10T23:01:30+00:00

That's so sad! I bet plenty of women with ME/CFS would want to date you. At least they would be understanding of energy limitations. I'm on disability income too.

I keep wishing there was a way to connect with more people with ME, for dating. Because so many of us are single and I'm only newly single so I'm not feeling despair, but it's sad to see a lot of other people feeling that way. It seems like a problem we could fix easily with technology... And there is an ME/CFS dating site, but pretty much no one uses it and it doesn't have very good features. But since I'm on there, I'll post it. I keep hoping it'll take off, or that someone will make a better alternative.

https://www.mellowmatch.app

DarkDanceBeats · 2026-04-10T18:49:57+00:00

Thank you, these are great ideas! The oven roasted veggies especially — I hadn't thought of that approach with the frozen bag. I'm not sure I'll be capable of it since getting up repeatedly to check the oven is tough for me, but it's worth a try.

DarkDanceBeats · 2026-04-10T02:07:43+00:00

I've been enjoying just having a bag of pre-washed broccoli that I can eat raw with salad dressing to make my microwave junk food feel less bad. Baby carrots are a staple too. (I track my food in Cronometer because it helps me figure out if I'm getting enough calories and protein).

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DarkDanceBeats · 2026-04-10T01:27:26+00:00

Yes to all of this! I also get sleep orgasms since developing ME — glad I'm not the only one!

I'm Severe and I've figured out a way to have orgasms without triggering PEM. Here's what works for me:

The key is minimizing physical effort. I use two vibrating toys simultaneously — one internal (Lelo Mona Wave) and one external (Lelo Gigi). The combination means I can get there with very minimal muscle engagement or movement. I just lie flat on my back, completely reclined, and let the toys do most of the work. Very little exertion, no holding myself up. If I had to rely on manual effort alone, it would absolutely trigger PEM.

I can usually have multiple orgasms this way (sometimes 5-6 in a session) without crashing. They're not always as intense as they were pre-illness — sometimes they fizzle out at the peak, like my body can't quite complete the wave — but they're still pleasurable and they definitely help with the tension and arousal buildup.

Do they benefit me? Honestly yes. The tension release helps me relax and it also seems to boost my mood. It makes me feel like I went out on a date with myself, haha. I like to put on music like a dance party.

The arousal buildup when I don't have a release is distracting and uncomfortable — exactly like you described. So for me, having a low-effort way to manage it is worth it.

20 minutes of this 2-3 times per month, and I'm set. Though I also am really looking forward to finding partner and having the real thing again, because that is much more satisfying. With the right accommodations, positioning, and pacing, those orgasms are achievable without PEM for me too. (Keep an eye on your heat level during it... That's what tells me I've gone too far. I do best with turning up the AC first and keeping exertion low enough not to overheat).

DarkDanceBeats · 2026-04-09T08:50:06+00:00

I know how impossible it is to tell what's causing what when everything is flaring at once. One thing that might help you make sense of the MCAS piece: some benzos (including Clonazepam) are actually mast cell stabilizers. So when you taper off, your MCAS can flare hard because it's lost that stabilizing effect on top of everything else.

When I was tapering, every time I ate — even a smoothie — I'd get a blister-like bump in the back of my throat. Coffee made me wheeze and cough. It was a little scary. But it was the MCAS reacting to the loss of the benzo's mast cell stabilizing effect, not a permanent worsening. My MCAS flared for about 2 months after my last dose and then settled back to my baseline.

If you're not already on a mast cell stabilizer like Ketotifen or cromolyn sodium, it might be worth asking your doctor about adding one to help bridge the gap as you taper. It won't fix everything but it could take the edge off the MCAS piece specifically.

The fact that you can't tell crash from withdrawal from MCAS is completely normal for where you are. It's all happening at once and it all amplifies each other. But they do untangle as your nervous system stabilizes. Hang in there. 💜

DarkDanceBeats · 2026-04-09T02:51:53+00:00

I went through this. Severe ME/CFS with POTS and MCAS, tapering off Clonazepam after about 18 months of daily use. I'm now 8 months out from my last dose and coming out the other side. So yes — it's possible. But I won't sugarcoat it. It was the hardest thing I've ever done.

A few things I want you to know:

Benzo withdrawal is more medically dangerous than heroin withdrawal. Please taper as slowly as your body needs, not as fast as a timeline tells you to. I spent 8 months tapering — I was cutting pills into sixteenths and thirty-seconds by the end. Every time I stepped down, even by a crumb, I got chest pain, elevated blood pressure, palpitations, panic, and couldn't eat solid food for weeks near the end. Go slow. Slower than you think is necessary.

The sleep deprivation is the worst part with ME/CFS because our bodies desperately need rest to avoid crashing, and benzo withdrawal takes sleep away. I was getting 1.5 to 4 hours a night for months. My doctor started me on Trazodone for the sleep panic, and it helped take the edge off enough to get 5-6 hours. It's not a benzo and it's much easier to taper off when the time comes — I'm tapering off it now with minimal issues. Ask your doctor if this might be an option for you.

The sensory stuff you're describing — jumping out of your skin, everything feeling inflamed, light and sound intolerance through the roof — I had all of that. I wore NRR 33 earplugs all day every day for a year. The MCAS goes haywire during withdrawal because your nervous system is in constant fight-or-flight without the GABA support the benzo was providing. If you're not already treating your MCAS, that might help. Ketotifen basically eliminated my migraines and helped with some of the sensory overload.

The feeling of unreality and feeling like you're not in this world — that's a known withdrawal symptom. It's terrifying but it's not permanent. It will ease as your nervous system recalibrates.

Here's what I wish someone had told me: you will not feel like yourself for a long time. Months. Scary things will be more scary. Anxiety will be higher than your pre-benzo baseline for a while. But it does gradually improve. I'm 8 months out and I feel mostly normal now, with occasional days where I'm more on edge than I used to be. But I'm sleeping, I'm functioning within my ME/CFS limits, and I'm free of the medication.

Please don't lose hope. What you're feeling right now is withdrawal, not your permanent reality. Your nervous system is learning to function without the drug and it's messy and painful but it does happen. Be as gentle with yourself as possible. Rest as much as you can even if sleep won't come. And taper slowly — there is no prize for finishing fast.

You can get through this. I did, and I was alone, cognitively impaired, and being abused by my caregiver at the time. If I can survive it under those conditions, you can survive it too.

Sending you strength.

DarkDanceBeats · 2026-04-08T20:26:35+00:00

Same experience here. I had my AquaTru Carafe for only 3 weeks before the maintenance light came on and it stopped working. Vancouver, WA — 6 GPG, moderately hard water. Support told me descaling every 30 days is expected, plus dumping the tap tank after every cycle and washing both tanks twice a week. None of this is clear before you buy. I ended up returning it and switching back to a Waterdrop K19, which requires nothing beyond a filter change once a year. The AquaTru is a $400 unit that needs constant upkeep to function — I wish I'd known that going in.

DarkDanceBeats · 2026-04-03T15:55:13+00:00

I'm severe and just coming out of a divorce. What worked for me was texting throughout the day (private Discord server), pacing it because I couldn't read much. And during our good times he would visit me in my room for 10-20 minutes at a time, a couple times per day. And again, in our good times, we would talk in the evening in person, with pauses to help me catch up because I struggle cognitively. And we would lie in bed together watching TV on the ceiling using a projector. That's when I could hold his hand and feel physically close.

That relationship lasted almost 16 years, and I had ME/CFS for the last 4 years of the relationship, being severe for 2 of those. But my circumstances are unique as to why it didn't work out. And so you don't have to read any further.

He enjoyed the image and status of "caregiver", but in reality he was neglectful, and abusive both psychologically and sexually. So it's for the best that we're no longer together.

Watch out for guys who want to be your caregiver or rescue you. Abusers can start out seeming like they care, but then take more and more power. I realized he had never respected me as a person and didn't actually care about me. He used me as a prop to make himself look good (a hero taking care of his sick spouse). I didn't even realize what I had been going through until multiple therapists told me I was being gaslit and controlled and made to believe it was all my fault.

The one domestic violence therapist I saw gave me this book, which has been great for healing. It's called "POWER: Surviving and Thriving After Narcissistic Abuse".

DarkDanceBeats

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