u/SpaceNerd223

Well, guys, I'm making my first post here (I think). I'm severe, I've been bedridden for 12 years. Things in this time frame got a bit better, at one point I was able to go to the Gym. Took me an hour bc most time was sitting there due to my POTS. But still. It was movement. I got put on propanolol last year for POTS, it helped my standing. Still, I couldn't get out of bed. Thought it was a starting task issue. Trialed adderall. Did so. Many. Steps. And by that I mean like 5,000 compared to the usual 400.

At this time I was also pushing myself for sooo many doctors appointments. In january, I crashed. I crashed again in April. I have not returned. I have gained weight. I'm so bedridden most days I'm fine not even wiggling my body in bed for circulation which I know is bad. Showers are every 9-14 days. With misery beyond belief. I can't manage even standing bc of pain. I'm investigating what else is causing my standing intolerability.

I've been diagnosed with MALS. I want/need MALS surgery because the pain is too much to bear. It's been 20 years. I'm working very closely with many doctor specialities.

I was told tonight I need to lose 45 pounds to be eligible for surgery. Weight loss has been one of my primary goals for the last 10 years, since I gained 60 lbs off a med. I know all about nutrition. I try to make every food choice good. After medical procedures, I seem to gain weight. So, last year I was 208. This year 245. I am typically 145.

I am completely heartbroken. How to do it when I can't move, moving causes excruciating pain I want to d**, I can't even make myself food. Realistically considering glp which I never wanted.

_____

I'm covered from a practitioner point of view, hopefully they can help. Not so much asking for advice but maybe those super severe might have some? Traditional advice just won't work, as we know. So, I am mostly sharing because I am heartbroken.

Not that I have to lose it, I know I do. It's actually causing me pain right now. But how. That is the question. How without hurting myself. :(( Thanks for listening.

Ps. I need this surgery 😭 I was hoping for in 2 months, so it now probably being over a year is a huge setback. The pain from it is one of the reasons I'm bedridden, and it's causing me massive pain every day.

Thanks. ♡🌹 a flower for also those suffering <3

Hi! For who take mestinon and ldn, which did you start first? How do you take them? I think i was told to take my ldn in the morning, but I'm still trying to figure out best time of day to take my mestinon! My starting doses are 0.25 ldn and 15 mg mestinon. I know i love mestinon, but I am a little wary of it after my first 3 tries [mainly that for some reason I can't lay flat on it, so I'm thinking I have to time it mid day after my after meal fatigue naps]

Do you guys also get after meal fatigue where you can't go any further you must sleep? This seemed to start during my worst pem, but now it's stayed 😪

Thanks everybody!!!

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Has anyone had clonidine in the celiac plexus nerve block as well? Did it do anything to your blood pressure or POTS? Thanks!

I'm already taking guanfacine

Has anyone had clonidine in the celiac plexus block as well? Did it do anything to your blood pressure or POTS? Thanks!

Has anyone here had open surgery for MALS release if you also have mecfs? Severe?

I'm sure I won't regret it (if it helps, presumably). I've pretty much decided on traveling half way across the country for open. I could do it locally lap but I'm feeling like all signs are pointing toward my first option. 🙏 i'm just very scared with the healing with mecfs, i also have eds. How does one even try to get less severe to be able to operate on better?

If you (anyone) had a good successful recovery, is there something your drs attributed it to? I'm trying to work on just contracting my abdomen muscles I just can't stand anymore. Thanks 🙏

Does anyone have tremendous rib pain? My whole upper band is hot to the touch, both epigastric pinpoint area and ribs to the sides. When I had my unilateral celiac plexus block it eliminated the pressure point in my epigastric area, even staying cool to the touch, but my ribs still hurt. Who even assesses this and how much of it is experienced with MALS? Thanks

Does anyone have tremendous rib pain? My whole upper band is hot to the touch, both epigastric pinpoint area and ribs to the sides. When I had my unilateral celiac plexus block it eliminated the pressure point in my epigastric area, even staying cool to the touch, but my ribs still hurt. Who even assesses this and how much of it is experienced with MALS? Thanks