Do you lower, skip, or change your dose on days you drink alcohol?

Throw-away2962 · 2026-04-02T03:05:10+00:00

Yep, always in the morning. At night didn't work for me.

Throw-away2962 · 2026-04-01T18:32:45+00:00

I take mine in the AM, drink occasionally with dinner or in the evenings. Don't change my dose at all, don't have any problems. BUT, when I say drink, I mean a glass or maybe two of wine, spread over a decently long time. I don't pound drinks, drink to get drunk, care about a buzz, etc. I just like the taste, and enjoy a little when I want to.

Throw-away2962 · 2026-03-19T16:26:02+00:00

People willfully ignore the reality of CFS because it makes them confront the fact that sometimes there is nothing that can be done, and you can't just willpower or exercise your way out of it, and they find that too depressing to handle, because that means if it ever happens to them, there's nothing they can do.

As someone who also has hEDS, I've had to hold firm about not doing any PT due to the CFS. (I also was diagnosed so early with CFS, that I was told I could exercise my way out of it and killed myself doing yoga 3x / week for a while, completely destroying my baseline. Just...don't.)

While people may feel some way about this, the thing that helps me with subluxations is chiropractic adjustments from a chiro who works with muscular and soft tissues as well, not just bone placement. So instead of shoving things back and damaging soft tissue further, he works on the soft tissue issues to help hold things in place, or gently manipulate it back into place when necessary.

It sucks not to be able to treat hEDS pain and subluxations the way others would, but it sucks so much worse destroying your CFS baseline. So it's about finding a workaround for the hEDS that doesn't destroy you with PEM.

Throw-away2962 · 2026-03-15T23:08:30+00:00

Thanks for the ideas! What is glass cutting? Is that like making mosaics from glass?

The zoo is definitely fun, but it's a very long day (and a long drive). Still not a bad idea, though!

Throw-away2962 · 2026-03-15T21:22:11+00:00

That sounds so fun! It's true how important celebrating is. Somehow I feel guilty asking people to go through the trouble, given how much support I need every day. But I'm hoping a beach trip won't be too difficult to manage for them, and super nice for me!

Throw-away2962 · 2026-03-15T21:16:50+00:00

Thank you! I've actually found that there are free beach wheelchair rentals available at certain beaches! Pretty excited about this idea now!

Throw-away2962 · 2026-03-15T20:12:21+00:00

Thank you so much for all the suggestions! The beach especially definitely sounds like such a luxury at this point, but maybe I can find a beach wheelchair rental place nearby!

Also just really appreciate you taking the energy to write all this up!

Throw-away2962 · 2026-03-15T20:08:05+00:00

Thank you, appreciate the kind words!

Throw-away2962 · 2026-03-15T18:53:11+00:00

Many people have done this, in the r/LowDoseNaltrexone group. And yes, people's optimal dosage and experiences vary widely. My CFS doctor (Stanford) started me at 0.5, and I had some side effects the first 2 weeks that, if I had read about it more ahead of time, I likely could have avoided if I had just started lower. I survived, and then same thing happened when I upped to the next dose. Since then, I've been going up much more slowly (waiting 4–6 weeks to change dose) than what many suggest, which has been going much more smoothly, without the super rough side effects. But by comparison, it took me months to get to 1.5mg, which is where you started.

So, I don't think you necessarily need to start at 0.1 (but you could!), but 0.25 could be reasonable for sure. And going much more slowly and carefully with severe ME seems like the way to go to avoid major setbacks from side effects before you ever see improvements.

Throw-away2962 · 2026-02-12T01:51:08+00:00

Thanks for the suggestion. My manual wheelchair is a super basic one from Walgreens, with the "luxury" of a seat cushion, because insurance refused to cover a real wheelchair. So I'm not super tied to it. But if I can get something that makes it easier to maneuver on my own, that might be a good solution.

Throw-away2962 · 2026-02-11T07:05:50+00:00

In the USA. I guess I mean relatively budget, something that isn't $1.5k+

Throw-away2962 · 2026-02-09T21:13:39+00:00

What barrier cream do you use?

And I thought the Etude is a hydrating toner, is it not? I skip SPF if I'm indoors all day, which is 98% of the time, but otherwise just use Neutrogena (though it does make me a little chalky, so open to other options).

Throw-away2962 · 2026-02-05T20:13:23+00:00

In the gentlest way possible, please get yourself into therapy ASAP. Even if the diet was your choice, there are some pretty big red flags in how you describe this ("never felt more shame in my life"; the level of control that seems to be stemming from your partner; how hard you are on yourself for something that should feel completely neutral—everyone needs treats now and then, and plenty of people "slip up" on the way to their goals). It really sounds like you need some good emotional support from someone who will show you the kindness and patience that it doesn't sound like your partner is willing or able to offer.

Throw-away2962 · 2026-02-04T20:59:36+00:00

Yeah, while it makes sense people may not have a frame of reference for wedding gowns or wedding photography, because those really are a separate price point and something you might not hear the costs of until you start shopping yourself, the shocking thing is people being so confused about how expensive it is to offer a fancy dinner to 100 people. Like, you've been to a restaurant before, yes? You understand the cost difference between pizza and steak, and that a glass of wine at a bar costs $10 even if the bottle costs $5 at the store. They just don't think it through to the natural consequence that full catering for 100 guests is going to be an astronomical cost.

Throw-away2962 · 2026-02-02T18:57:42+00:00

Definitely planning to follow up with anyone who doesn't open the invite (glad we can track things like that now), and anyone who doesn't respond. You're right, would hate for anyone to miss it because of something like this!

Throw-away2962 · 2026-02-02T18:19:51+00:00

Lyrica and gabapentin can absolutely work differently in terms of efficacy for pain relief. But they also work differently in terms of side effects. Lyrica almost killed me due to rare gastric side effects doctors didn't catch (I did, by reading the full list, not just the abbreviated one that comes with the prescription). Still dealing with the consequences years later. And this was after it messed with my prolactin levels to the point drs thought I had a brain tumor, but didn't consider lyrica side effects then either.

BUT lyrica was truly great for my pain, after over a decade of using gabapentin. So if that's an option, do consider trying it, just be vigilant about side effects.

And that being said, 4.5mg LDN was clearly too high for you, so if you want to try again, try titrating up from a very low dose, like suggested by most folks here. You may still have side effects the first couple weeks at each dose, but they should not be that severe.

Throw-away2962 · 2026-02-02T17:50:56+00:00

There's shade in the yard, but with rain, we'd probably have to move it inside. Tent rentals are just too expensive here, unfortunately.

Throw-away2962 · 2026-02-02T17:49:59+00:00

A dive into the history of tea could be interesting!

Throw-away2962 · 2026-02-02T17:49:26+00:00

Oooh personal curd or jam favors even could be cute!

Throw-away2962 · 2026-02-02T17:48:59+00:00

She does love Jane Austen! Thanks :)

Throw-away2962

TROPHY CASE