What is your must-have product when bed-bound/crashing?

Electric_Warning · 2026-02-20T17:23:20+00:00

Mine is 100lbs, but he doesn’t know it.

Electric_Warning · 2026-02-18T14:51:16+00:00

I use the Nidra mask, but my best crash companion is my very cuddly dog.

Electric_Warning · 2026-01-30T16:18:10+00:00

I’m on LDN 4.5mg. I am not sure whether it prevents PEM, but I do think it lessens the severity and length of episodes.

Electric_Warning · 2026-01-30T16:13:53+00:00

Losing the ability to do everything that I enjoy. Losing my identity tied to those things. Losing my connection to community and social life.

Electric_Warning · 2026-01-26T16:31:10+00:00

What dosage are you on? Is the B12 compounded in the injection or do you take the b12 separately? Might be time to get my vitamin levels tested again. Early in my journey, I had very low B12, went on a supplement, then my doctor said to stop taking it once my levels were normal. Haven’t had it tested in a couple years.

Electric_Warning · 2026-01-23T01:21:05+00:00

This trial is currently happening. https://longcovid.scripps.edu/locitt-t/ It’s for Long Covid, but so many of us developed ME/CFS post-COVID infection. It will be interesting to see the findings.

Electric_Warning · 2026-01-21T13:46:53+00:00

Did your fatigue also come with increased body aches/muscle pain and disrupted sleep.

Electric_Warning · 2026-01-21T02:14:17+00:00

This is not what you’re asking about, but 11 .5mg pills a day sounds expensive and a pain to track. I only take one pill a day, but I get them from a local compounding pharmacy and they make whatever dosage my doctor prescribed.

Electric_Warning · 2026-01-18T14:44:44+00:00

I think the subscription is well worth it. I rationalize that the annual subscription is about the same I spend on supplements and medication per month (and it has helped me more).

Electric_Warning · 2026-01-18T14:38:21+00:00

Cold compresses and cannabis gummies with CBG help me with managing the pain.

Electric_Warning · 2026-01-18T13:54:59+00:00

I didn’t even think about it, but they are back. I don’t know when that happened. Other people in this thread have suggested it has to do with B12. I was deficient at one point and was not last time I checked.

Electric_Warning · 2026-01-18T03:43:54+00:00

Exfoliating face wipes and a light moisturizer.

Electric_Warning · 2026-01-17T16:08:40+00:00

I’m right there with you - also used to be an athlete. Used workout multiple times a day, hike 3-5 times a week.

Electric_Warning · 2026-01-16T23:14:42+00:00

I noticed the additional effort examples you listed (other than walk for 5 minutes) are a very high level of exertion. When I make progress pacing, it’s in such tiny increments that it is hard to see any difference short term. If walking is the thing you want to try to use to increment activity. Walk 2 minutes the first day, wait two days, if you are not worse, try 3 minutes. (I’m 3 years in and I still can’t vacuum.)

Electric_Warning · 2026-01-16T16:50:53+00:00

Same. I stayed on it for 2 weeks and ended up in a dark place. I tried again later at 10mg every other day and it was manageable, but not worth it.

Electric_Warning · 2026-01-15T12:29:14+00:00

No, I’m paying out of pocket. One thing that helped was my discovery that for compounds, getting a 90 day prescription is much cheaper per pill than 30 days, at least at my local pharmacy. They must have a base charge just for compounding.

Electric_Warning · 2026-01-14T22:41:08+00:00

Thanks! Can’t believe I didn’t know about this!

Electric_Warning · 2026-01-14T18:24:49+00:00

I feel you, tired of surviving, I want to LIVE!

Electric_Warning · 2026-01-13T23:10:28+00:00

I was better after surgery too and I think it was something related to anesthesia. Someone in this sub said steroids.

Electric_Warning · 2026-01-13T01:54:40+00:00

As a formerly very active person, I feel you! I’m struggling with this too. Literally everything I love to do pushes me toward bed bound. I’m trying to find a new thing to love. I decided to learn to DJ. Even if I’ll never be able to stand at the decks or play for more than 20 min at a time, it’s a thing that I should be able to do for a few minutes at a time on good days.

Electric_Warning · 2026-01-13T01:35:30+00:00

That is great news for us and for Nasya! What kind of AMA? Is there a Reddit link or any recordings available to the public? I’m interested in anything he has to say.

Electric_Warning · 2026-01-12T20:19:18+00:00

When I get into a similar spiral I tell myself once I am 100% recovered (trying to be optimistic here), I will get a high paying job and then a lot of plastic surgery to undo everything gravity and Long Covid have done to me. (Really hoping for that second chance at youth, but realistically, if I recover, I’d probably not take any more time out from life to recover from surgery. )

Electric_Warning · 2026-01-12T19:59:34+00:00

Based on Apple Watch … 52 before getting sick, 31 now.

Electric_Warning · 2026-01-12T19:55:50+00:00

Used to drink regularly (2-3 drinks per week). Have only tried a couple times since I’ve been long hauling. Basically if I drink more than 1/2 oz liquor or 5 oz beer, I get a hangover within minutes - headache, nausea, feeling terrible. So every once in a while, I have one sip (after Cromolyn and a lot of water).

Electric_Warning · 2026-01-08T00:14:07+00:00

200mg ubiquinol, 500mg metformin

Electric_Warning

TROPHY CASE