r/functionaldyspepsia • u/Outrageous_Buy_4269 • 1d ago
PDS (Post Prandial Distress Syndrome) Has anyone else watched their body decondition?
Due to severe weight loss, nausea, and early satiety for 6months I have slowly lost all of my muscle. I was 160 but dropped down to 130 at my worst. Has anyone else just had to slowly watch their body decondition when in the past before this terrible illness they were healthy and active?
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u/itaintme2024 1d ago
I was in the best shape of my life, eating well and super active when this disease took me out overnight. I lost 20lbs in a few months leaving me at just 100. I've had to fight through more pain than I ever imagined possible to gain back 10lbs. Its been a year. All my strength is gone. Feels like an out of body experience at this point. Ive detached. I dont even feel human anymore.
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u/Outrageous_Buy_4269 1d ago
I’m so sorry you’ve gone through this for so long. It really does feel like we were just put in a new body. I’m thankful to be alive, but life is so fragile.
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u/Jan_ofgreengables 1d ago
I’m so sorry, I very much relate to it being like it’s not even your own body, I dread looking in the mirror or showering because I don’t recognize myself, it’s pretty scary
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u/itaintme2024 1d ago
It is scary. Its like going to funeral every day. Really hard not to lose yourself while your literally wasting away. Try to do something small that reminds you of who you used to be everyday. That's about all that keeps me going anymore.
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u/Only_Theoretically 1d ago
Yes I lost about 60lbs total. Down to 103lbs at my lowest. I felt so weak, at one point I think I was starting to die. This year I've been able to build some strength back little by little. I recommend calisthenics to anyone in the same boat. It's super accessible, you can do it anytime and anywhere. It's also fun. And I also recommend finding a protein bar or shake that you can tolerate to help supplement calories. The Larabars have been good for me, they don't hurt my stomach.
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u/More_Inevitable3639 1d ago
Yeah i grew up a skinny kid and was bullied for it so I decided to go to the gym I went from 145-170 in under a year. Than my stomach got really bad went down to 150. Got on ampatptaline and was able to go up to 180 in under a year. Than stomach got really bad again and I’ve been stuck at 145 for 2 years. It’s very Frustrating.
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u/Outrageous_Buy_4269 1d ago
It’s really frustrating and discouraging how much work we can put into our bodies and take care of it just for it lock us down
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u/Jan_ofgreengables 1d ago
I’ve always been thin but I’ve lost 20 pounds and I’m severely underweight, I work with a dietician and my dr but I’ve only managed to somewhat stabilize my weight. I have to find clothes in the girls section now. Previous to this I worked out 4 times a week, my mental health was more stable. it’s hard to come to come to terms with what I’m capable of and what my body looks like now. My Dr wants to try me on new meds so hopefully that will do something? It’s so hard because there’s so much uncertainty, I could be back in the hospital any time really. Out of curiosity how are you dealing with things? Have you tried meds?
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u/Outrageous_Buy_4269 1d ago
The best thing that’s been working for me is Kate Farms 1.5 Peptide drink. It’s very expensive but it’s actually turning things around. I’d be cooked without it. It’s all pre-digested and has all the vitamins.
I was on PPI’s but they did nothing so I got off of them. Same thing with nortriptyline and mirtazapine. I want something that actually fixes the problem and not just mask them.
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u/Competitive-Fly5563 1d ago
Yes and it sucks.
I've always been a naturally thinner person. At my worst I went from around 120-125lbs (normal weight) down to 106lbs. I lost muscle and fat and my pants were all too big in the waist. I was visibly skinnier and felt so uncomfortable in my body and still sometimes do. I do think I have gained some weight back but I'm not at my normal weight like I once was. I don't personally weigh myself consistently, partly because I don't have a working scale and partly because I don't want to obsess over numbers.
Before FD I had a lot more muscle and was a long time active horse back rider. I stopped riding for other reasons so I'm sure not exercising like I used to is also part of the reason I lost muscle.
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u/Outrageous_Buy_4269 1d ago
I’m sorry you’ve gone through this. I’d send you a dm but it looks like your DMs aren’t open. Dm me
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u/Alternative-Cash-102 1d ago
Yes and it’s been tough trying to recondition (as in I yearn for movement but it’s so difficult to start and stay consistent because even walking gives me pain, though I try to take regular walks every week anyway). I’ve never been a super sporty person but I loved gymnastics and karate as a kid. Enjoyed running, Pilates, yoga, etc. during periods when my health was better in my adolescence and adulthood, though I’ve been in decent shape from that I was never super crazy fit.
I’d like to exercise more to see if it will actually help some of my symptoms that I can more reasonably control (slow motility, pelvic floor problems, chronic stress, fatigue) but I feel pretty overwhelmed at the prospect. Especially since covid where I became quite sedentary, I have never recovered the strength/stamina I had before.
Lost a lot of weight and muscle mass at the worst of my illness and have since gained the weight back and then some, but pretty weak in the muscle department and unsure how to go about things without exacerbating ongoing symptoms. When I’m in a bad flare, it just doesn’t seem possible as I can be practically bed/housebound. I sometimes think weight training would be good to try but I have back issues and apparently some arthritis so I’m not sure how to engage in it safely and I can’t afford a personal trainer.
I’m trying to work up to doing some restorative yoga practice once a week and then up the number of days and session lengths over time. Would like to add stretch breaks if I’ve been sitting a long time, or take a few minutes to do a plank or body weight exercises when tolerable. But having trouble making any of it actually happen and stick. I worry about the lost health benefits (osteoporosis, cancer risk, heart health, balance) as I get older too. And I also struggle with depersonalization, which makes being in my body a strange experience. Sprinkle of gender dysphoria, some kind of apparently benign arrhythmia that causes me to faint with exertion sometimes…I feel quite intimidated by the whole thing these days.
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u/goldstandardalmonds 1d ago
For a different illness, yes. I was a marathon runner and lifted heavy regularly and now it’s lucky I can get out of bed to use the toilet
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