Cyrus

I hope that you won’t crash too hard, especially with your medical appointment. (At least it feels a bit “better” to crash when you’re clean, for lack of a better wording.)

I remember when I scrubbed layers and layers of dead skin off of my feet after months of not washing them. How itchy my hair was from not shampooing for 2 months, and how gritty my face felt (like sandpaper) from not washing it for a month.

I’m glad you were able to find a way to wash yourself 🙏

I’m already on domperidone but it doesn’t do much at all anymore.

Acotiamide piques my interest because it doesn’t act on dopamine nor serotonin receptors — it’s an acetylcholinesterase inhibitor like Mestinon, with the added bonus that it specifically targets the gastrointestinal tract.

Debating if I should spend $250 on acotiamide, a medication for postprandial distress syndrome.

It won’t help with blood pooling into my stomach due to #POTS or avoid PEM from eating more than I can tolerate, but if it can make digestion somewhat less painful…

😮‍💨

#MECFS #NEISvoid #gastroparesis

Even though my tube bypasses my stomach (so it doesn’t have to put in any work), just my small intestine assimilating more feed than I usually tolerate is too much effort.

But it’s not like I have a choice. 🙈

So I wasn’t making it up after all. Increasing my daily amount of (tube) feed does cause post-exertional malaise to some extent.

The hallmarks of my body struggling to process food are an elevated heart rate and a pounding headache that last for hours, and they’re back.

#MECFS #POTS #NEISvoid

Thanks @untonuggan.bsky.social @keristars.bsky.social, I’ve pinned the feed to my Home timeline. That will come in handy.

I also hope that your diet adaptations will continue to work for you, and that you can somehow manage to find a doctor. ME specialists are few but at least a helpful GP goes a long way.

It’s nice that you’ve been granted the permission to grow your own CBD. Just make sure to have your certificates readily available in case the police busts your door because they think you’re growing weed after having looked at your electricity bill 😄 UV lamps are costly too, unfortunately.

to increase my daily amount of tube feed, it would just be a convenient excuse to justify being able to do it after months of me telling the nutrition department at the hospital that I can’t.

It might help with my digestion in general but I can’t afford taking high quality CBD oil regularly.

Thank you. Looking at clinical trials, it seems that CBD isn’t effective on average but that some people respond more than others, and I am aware that there are different grades of quality (it can get very expensive!). In any case I don’t mean to actually take it because I don’t need it —

Also, I’d appreciate any thoughts on my strategy, please (especially from #pwME #pwLC with eating difficulties but not only).

my very helpful GP to find another hospital doctor who can renew my prescription for tube feeding.

🤞

(and as always, f*ck severe #MECFS for putting us in such difficult situations)

I really hope that this will all work out.

If the nutrition department threatens to remove my NJ tube while I’m regaining weight, then I’ll plead with the gastroenterologist who follows me for my #gastroparesis and operated on me to take over.

If that doesn’t work either, I’ll reach out to —

which is effective for a total of only 6 hours (not long enough to cover the duration of the feed).

After thinking about a way out, I plan on saying that I’ve been recommended CBD oil and that it works like a charm. 😅 (THC sounds more plausible because it is psychoactive but it’s illegal here.)

So I need to figure out an excuse as to why I’ve suddenly been able to increase my feed, and I have a neat idea for that…

I’ve been telling them that trimebutine quells the pain by acting as a sort of “intestinal anesthetic” but that I’m limited by the maximum dosage of 3 pills a day, —

To justify not increasing my feed, I’ve been telling them for months that it causes intestinal pain. I think it did happen a bit in the beginning but it hasn’t since, so it’s just been a convenient lie (or so I hope — I’d rather not find out that it isn’t when I start increasing my feed).

chiefly because of #MECFS, but this won’t happen.

My only resort now is to increase my feed to *slowly* put some weight back on. Not just to reassure them, but also to hammer home the fact that it’s not the G-POEM that helped — only tube feeding, so I need to stay on it to maintain any weight gain.

coasting at an amount that I’m not losing weight on (on top of what little I can safely eat by mouth).

But this can only go on for so long, especially now that the ultimatum of parenteral nutrition is looming over me. Ideally they would understand that I need to be kept on tube feeding —

which specializes in eating disorders / mental health, will remove my tube if I get back to a normal weight. They think that this alone will get my digestive tract going again and get rid of any issues.

So I’ve been reluctant to gaining weight by increasing my feed, and have instead just been —

(potential infections and liver / gallbladder issues) but it would also necessitate another stay at the hospital, which I obviously want to avoid at all costs.

Ever since I’ve been tube fed, I’ve been concerned that the hospital nutrition department —

Anyway, the nutrition department at the hospital that monitors my tube feeding (I have a check-up appointment every 3 months) wants me to go on parenteral nutrition if I don’t gain weight after the G-POEM surgery.

Not only is it more risky than a nasojejunal tube —

Worsening Postural Tachycardia Syndrome Is Associated With Increased Glucose-Dependent Insulinotropic Polypeptide Secretion Background: Postural tachycardia syndrome (POTS) is characterized by excessive upright tachycardia and disabling presyncopal symptoms, which are exacerbated after consuming a high-carbohydrate meal;

Why is digesting a meal that I eat by mouth so taxing that it gives me PEM, even with soft or liquid foods, while I can assimilate my tube feed without crashing?

At least, it seems like tachycardia after a carb heavy meal in #POTS is a documented finding: www.ahajournals.org/doi/10.1161/...

— even when I don’t feel overly full. And it makes me crash / PEM.

In contrast, this doesn’t happen with my tube feed that bypasses my stomach and goes straight into my small intestine.

I don’t know what’s wrong with my digestion since my #MECFS became severe after the peritonitis in Dec 2021.

Yesterday, I tried pushing my luck. In one sitting, I ate a lot of snacks with a soft consistency that I should theoretically be fine with, given the surgery.

But the same issue as usual keeps arising: my heart rate shoots up and I get out of breath for hours from the exertion of digesting —

This week I had a surgery for my #gastroparesis (G-POEM). It was quick and painless but I inevitably crashed and am slowly recovering at home. Unfortunately, it hasn’t helped with my gastroparesis even though the results should have been immediate.

A long overdue update

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TW: severe #MECFS, eating difficulties / weight loss / #gastroparesis, hospital

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I’ve been fairly stable since I started being tube fed last year. I haven’t lost weight but haven’t put any back on either (IMC still ~14.0).

#NEISvoid

Thank you to every #pwME #pwLC who replied to my post, it cheers me up to see that the #MECFS #LongCovid #NEISvoid communities are active on Bluesky 🙂

I’m sorry that I can’t reply to you all individually but I’ve made sure to follow you.

I can’t help but think how different this event would have been if it had been in the UK (and the nominees had been mostly eminent British people)…

Glad to meet you! It feels much nicer to connect with fellow #pwME here than on the hell hole that the other site has become.