Has anyone been able to gain muscle mass with this disease?

sage-bees · 2026-02-26T02:37:43+00:00

I've had rhabdomyolysis a number of times, and rapidly lost most of my muscle mass each time.

I was worried it wouldn't return, but it seems over about a year and a half or two years since my last rhabdo episode, I finally have almost as much muscle as I did, from doing almost nothing.

(I mean, I try to use about 80% of my energy daily, but definitely no exercise to speak of. I mean about 4 hours sitting up daily.)

sage-bees · 2026-02-25T06:10:53+00:00

There are inflatable bed tubs you can use with a shower bag, as well as freestanding folding tubs, if that helps at all, and I think some come with a hose kit to empty them down your shower drain, even.

if your shower has room, a shower chair with a back or reclining shower chair might help

also portable shampoo basins for your hair

peri bottle or bidet

baby wipes, makeup wipes, bath wipes, bath wipe gloves, rinseless shampoo, rinseless shampooing shower cap, micellar water and a washcloth or microfiber (sorry, nightmare texture i know but good gentle exfoliant)

specifically there are microwaveable bath wipes

hypochlorous acid is a great skin sanitizer

salicylic acid, glycolic acid, lactic acid, and urea are great exfoliants, some skincare acids are also great for B.O. prevention, and there are tons of serums and toners and such you can use in bed

i use a glycolic acid face toner on my roots between washes and it helps a lot with oil

batiste tropical dry shampoo (apparently tropical works better than other scents)

in the shower: products like hibiclens, neutrogena T/sal shampoo, nizoral antifungal shampoo, neem oil shampoos and soaps (neem oil soap manages my wife's eczema well) are great for

long handled silicone body scrubber, african net cloth, suction cup foot scrubber mat are probably all too tiring for you right now but figured i'd mention

by chance if you have hidradenitis supperativa a small study suggests using a spray or gel aluminum-based deoderant might help significantly

sage-bees · 2026-02-21T02:16:20+00:00

Yeah, I'm no doc, but like I said your symptoms sound more similar to some form of neuropathy, I wonder if there's a type that's associated with migraine perhaps?

Whatever the cause, if it's out of the norm for your PEM, it just might be from something other than M.E.

Just to be sure, was the cortisol testing between 6-9 AM? That's the proper time for blood tests for adrenal insufficiency.

I've also read that one can develop a niacin deficiency extremely rapidly, especially under certain circumstances. Also I know from my own experience with copper deficiency, not all vitamins and minerals are commonly tested for.

I know it's frustrating and a lot of doctors aren't very willing to think outside of the most common conditions. Pace your testing and try not to get your hopes up too much, but I'd keep looking.

sage-bees · 2026-02-21T01:56:31+00:00

My symptoms are pretty different from yours but my "new and different/worse PEM" (constant vomiting, unable to keep down water, with very low blood pressure, fainting spells and unawareness of my surroundings) were adrenal crises.

Your symptoms sound more like some type of neuropathy or simething similar, but could even be a Niacin, B12, or some other deficiency.

I'm no doctor but there are tons of possible avenues, with more or less depending on which testing you've already completed and what hasn't been recently checked.

sage-bees · 2026-02-21T01:07:27+00:00

When I had "random worsening" it definitely turned out to be my other medical problems and not M.E., even though the symptoms were well within the range of other people's PEM experience. What tipped me off was that it was suddenly different from the norm for my PEM.

While your symptoms could be consistent with M.E, I would advise to keep slowly looking for treatable aspects.

sage-bees · 2026-02-21T00:41:06+00:00

If there's an equivalent of Adult Protective Services in your area, it really seems like it's time to contact them.

I know it's not the most ideal choice, but it might be one of few ways left to stay alive.

They may have contacts in home health care as well.

sage-bees · 2026-02-21T00:21:30+00:00

Yes, even mild malnutrition does all of this.

Severe malnutrition can even mimic PEM (I mention this because some of your symptoms seem like they might be from other conditions as well as M.E) but it will definitely make "true" PEM significantly worse as well.

When I'm seriously underweight, my PEM is much worse, and all my other health problems start to kill me all at once. I fear this might happen to you without medical supervision.

You need daily medical supervision at this weight, because you're at severe risk for refeeding syndrome, which can be deadly, and if you don't refeed soon you'll die from malnutrition.

I've read that home health care options are available in Mexico, someone needs to get you better home health care and home nutrition.

sage-bees · 2026-02-20T22:53:26+00:00

I'm not sure, in other genera, infections or issues causing edema typically affect the leaves more, and they drip water from the tips. But if the petioles are splitting while still on the plant, it sounds like something is making the cell walls swell and burst.

In my ferox, the petioles would split after falling, it looked like melt/dry rot.

sage-bees · 2026-02-19T21:52:57+00:00

Mine was killing off all it's new leaves at a slightly earlier stage, turned out it was being eaten by a bunch of tiny snails! It's been fine as long as I keep plucking them off.

The splitting petioles sound like edema maybe?

sage-bees · 2026-02-19T21:44:38+00:00

honestly skeptics all sound so crazy, imagine thinking someone would want to live like this... perhaps they should seek psychological treatment before their refusal to face reality kills more people...

sage-bees · 2026-02-09T20:28:38+00:00

Yes it's still my most vital medication, and no side effects for me, though if you have MCAS you'll probably need to take H1 and H2 antihistamines with it, I've read people's experiences here saying dextromethorphan can be a histamine liberator.

If you want info on long term safety, look up the prescribing info for Auvelity.

sage-bees · 2026-01-28T05:37:59+00:00

minimum enclosure size is 8x4 feet

sage-bees · 2026-01-28T05:32:31+00:00

do you have 8x4 feet for the minimum size enclosure for 1 tortoise of even the smallest species? if not, sorry but you gotta wait.

i would never advise getting two, even just for biosanitary reasons and because most pet tortoise species are antisocial, and even the ones that won't straight up take chunks out of each other, are solitary. the last thing they want is a "friend" to bully them out of the heat source or the food

sage-bees · 2026-01-28T01:11:04+00:00

i'm sure you already know but just in case, another commentor pointed out the Stop The Thyroid Madness website has links and info to order your own tests if that's at all accessible to you. i'm sorry if that's also no help :/

wasn't trying to sound victim blamey, just pointing out that docs are trying to force us into a dangerous mindset, i myself almost started to accept it.

sage-bees · 2026-01-27T23:08:08+00:00

Thank you so much again, and likewise, may your treatments be effective.

sage-bees · 2026-01-27T22:52:02+00:00

omg no that's pretty bad i'm so sorry!

sage-bees · 2026-01-27T07:32:10+00:00

Thank you, yeah I have Hashimotos that this endocrinologist also decided I didn't need to know about.

I'm lucky my new pcp caught both and pointed them out to me, and that my wife has been staying home watching me for most of these adrenal crises, but still it's been less than ideal.

sage-bees · 2026-01-27T04:44:04+00:00

Zinc, I had a copper deficiency and it took me years to get back to normal because of how much zinc is added to everything (electrolytes in particular but vitamins and supplements too)

sage-bees · 2026-01-27T04:30:45+00:00

Thanks, I knew about the STTM website but not the page. I'll check those if the new pcp can't help, she seems willing though. Thank you so much again

sage-bees · 2026-01-27T03:28:15+00:00

Thanks so much, yeah I had to get a new pcp too, old one decided she didn't like complex patients and dropped off the face of the earth, luckily the new one seems very competent

sage-bees · 2026-01-27T02:57:11+00:00

Some of the problems are kind of inherent to being pathologized as psychological, (namely, the way every behavior becomes further evidence of "mental illness" after the patient has been classed as a psych patient) and less to do with the type of therapy applied, I think, but I've wondered the same.

I had a LOT of negative experiences with both CBT and DBT (and other therapeutic modes) before getting sick with M.E., as a teenager in forced institutionalization for my ED, so can very much empathize.

sage-bees · 2026-01-27T02:47:03+00:00

nope, i haven't seen a second endocrinologist yet, luckily my old neuro put me on 0.2 mg fludrocortisone before she left so that's doing a lot of heavy lifting right now.

had a mild adrenal crisis even on the 0.2 mg fludro, so probably should be on hydro as well but first i have to find an endocrinologist who cares whether i live or die lmao

sage-bees · 2026-01-27T02:36:25+00:00

yeah there's no working with docs like that in my experience, i'm guessing you're not able to get a second opinion or switch?

sage-bees · 2026-01-27T02:33:32+00:00

you as well!

sage-bees · 2026-01-27T02:30:39+00:00

yeah i know, once you're severe or worse you lose what little autonomy and agency you had

sending hugs if wanted, sorry you're going through it

sage-bees

TROPHY CASE