A Problem I Didn’t Want Back

CW: Diet culture BS, weight loss/gain, dieting talk. 

The current state of the case in apparel from five decades. Those boots have no zipper and I don’t don them on spec.

A few weeks ago, a new doctor asked, “So has your weight always been pretty stable?” I stammered something out, but when Chimp and I were back at home, I said, “That question about my weight? We would have been there all day.”

I’ll attempt to be brief.

One million years ago, I wrote an entry about the unexplained weight loss when I fell ill, which landed me at 118. The least I’d ever weighed at my adult height, pre-illness, was 117, and that required an unhealthy degree of food restriction and running twenty-five miles a week. My casual exercise set point had been around 133-138, and serious exercise would keep me at 128, so 118 was a big change.

When the tiny-waist-big-booty combination gained broader (sorry) popularity in the years after I got sick, I felt rather bitter about it. I’d endured having it at a time when it felt like a liability and now I didn’t get to reap any of the vain rewards, like readily available curvy-cut pants.

But I told myself (and this is definitely a diet-culture-influenced thought) that at least if I had to be sick I got to be the kind of thin I’d always wanted to be. 

My weight has gone even lower than that initial decrease at times. There’ve been downturns where it has fallen temporarily to 107. In 2018 it fell from 117 to 102, and it turned out I had two parasites: Encephalitozoon intestinalis and Cyclospora.

This was A Whole Thing where I had to convince an infectious disease doctor that yes, because of the digestive and immune issues in ME I could potentially have a parasite that was historically thought only to be seen in uncontrolled AIDS. There was a short course of a med of a seriousness that they do liver checks. After I finished treating the microsporidosis, the Cyclospora cleared on its own, I immediately had a little more energy, and my weight bumped right back up to its ME set point, plus a few pounds more, but they weren’t hard to take off. 

With all that churning within a new range, it’d been so long that I thought the shift in my weight was permanent. Those of you who know me intimately will understand how permanent this indicates I thought it was: I gave away almost all the vintage clothing I’d painstakingly collected in my pre-illness size. Big hips are a big problem in vintage.


A year ago January, I started having trouble sleeping. Upping my meds wasn’t helping in the way it had in the past. The one thing that I found would help get me to sleep was a spoonful of a particular food: peanut butter mixed with confectioner’s sugar and vanilla. It was no sacrifice; it’s essentially the filling of a peanut butter cup. My weight did start going up under this regimen, but I told myself that it’d be easy to take off the pounds when I got the meds figured out.

One of the changes in the meds was to bump up my mirtazapine. Mirtazapine is used as an appetite stimulant. Having taken it for a long time, it can make you eat more, but to me, psychologically, the mechanism feels like greatly lowered inhibition rather than appetite stimulation. I say this because I feel markedly less anxious as well when it takes effect, and that feels the same – like an inhibition reducer, causing my brain to freak out a little less. 

So every night I get in bed, and I think to myself, “I am not going to get up sometime during the night and have A Ridiculous Snack,” and after the mirtazapine, sometimes that willpower, which seemed so solid when I took the pills, has evaporated.


Part two of the gain happened after starting to work with Dr. Levine in September of 2021. Her intuition moved her to write a lab slip including tests for mast cell activation syndrome (MCAS). I know people with ME with MCAS, but I was only aware of the presentation with strongly allergic-type symptoms, which I don’t have, so I’d never thought to investigate it in my own case. My histamine – what’s associated with allergic-type symptoms – was normal, but the tryptase came back elevated. 

Dr. Levine proposed we treat me and see if it helped, though I didn’t look like a typical case. She had me start ketotifen, a mast cell stabilizer. Technically it’s an antihistamine, and it’s not approved for oral use in the U.S., but that’s not because it’s thought to be dangerous, just that it’s very old and nobody ever bothered. I asked her if I could try the supplement quercetin [PDF], which is used in MCAS, and she gave that her blessing. 

Both of them helped my sleep, but more pertinently, they made my GI tract a lot less reactive. This completely makes sense as an MCAS symptom now that I know about it, but it was surprising when I began the new regimen.

As with other antihistamines to varying degrees, ketotifen is known to be associated with weight gain. The cause isn’t known for sure – could be appetite stimulation, could be some set of internal changes. 

That may be contributing, but mostly I think making my GI tract less reactive is improving my absorption. I believe that the calories put in are being taken up in a way they weren’t before. This is great in that in the long term, better absorption and less reaction might contribute to improvement, but it also means weight gain if I don’t reduce my intake. 


So with all this I’m back around 138 for the first time in 20 years. It’s very strange to have something vaguely like my old body back, though without my pre-illness musculature, not precisely the same.

Because I have so little muscle to carry myself around, I feel like I need to take some of the weight off. I’ve been counting calories and trying to find the new number that’ll allow me to do that. Not being able to exercise, it’s going to take a long time to make headway, and I’m struggling to be mindful of that.

It’s been decades since I needed to do this the hard way. I’m unaccustomed to it now, and I have a lot of days where the deprivation I’m feeling right then isn’t showing results right then and I feel defeated. It’s a lot harder to be slightly hungry sick than it was when I was well.

I know I’ve complained about this for 1150 words here, but it’s not all bad; 1. Chimp has zero complaints and 2. when this turned up, I got to post it:

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6 Responses to A Problem I Didn’t Want Back

  1. Pingback: Histamine Sensitivity and ME/CFS: A Plan of Attack | No Poster Girl

  2. Keeping weight stable with chronic illness is a real pain! I’m on a couple of meds where increased appetite and weight gain are known side effects, and despite my best efforts I’ve been sitting at between 72 and 73kg for ages now (around 160 pounds). It’s frustrating, but at least my doctors keep assuring me that all things considered the fact that I’ve kept it stable there (even if it’s not an ideal weight) is something to be really please about, and something a lot of people aren’t able to do. It’s also right at the borderline of healthy and overweight, so they’re not pushing me to loose weight, just continue my efforts to not let it go up. I don’t know if it will help you , but for me the biggest help has been using a fitness tracker and a food tracker app. It lets me adjust depending on my energy levels each day, so I’m not overeating or undereating on any given day, plus I can track across weeks to allow me to have the occasional day when I go out an enjoy a big meal, then be more careful with what I eat for the rest of the week to balance it out (again without having to go to extremes!)

    • Jocelyn says:

      Nice to hear from you again, FFF! Sorry to hear it’s plaguing you too. Yes on the tracker! I did MyFitnessPal for a few weeks to try to get a sense of where my calories were landing and if it was making a difference. My intake’s pretty uniform from day to day, so I don’t feel like I need to continue to do it every day, but it’s a really useful tool to avoid the tendency to cut and cut and cut intake until something appears to work, which probably results in a too-low amount.

  3. Pingback: Pyridostigmine Mine | No Poster Girl

  4. Wait I didn’t know that it might be meds causing me to get up in the middle of the night and eat junk!

  5. Also, your picture in this post, it looks like we have similar fashion tastes!

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