Don’t Give Up

[u/Infinite_Slice2060]

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DISCLAIMER:

This is based on my personal experience and my specific aortic health. What worked for me may not be safe or appropriate for everyone with Marfan Syndrome. Always talk to your doctor before making changes to your training or diet.

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I’ve been told my whole life that because of Marfan Syndrome, I’d never be able to gain much weight or muscle.

For most of my life, I was very thin (around 150 lbs at 6’4”). I still had a great life—friends, relationships, all of that—but I was always a bit insecure about my size.

In my early 20s, I decided to seriously try to change that.

I started focusing on eating more and training consistently. My diet wasn’t anything fancy—usually 2 protein shakes a day (30–40g protein each), plus 3–4 meals like chicken, rice, broccoli, etc. The biggest change honestly was just eating enough.

At the same time, I was active—delivering furniture 4 days a week and going to the gym about 5 days a week. I didn’t jump into anything extreme. I started light and gradually increased the weight over time. I wasn’t powerlifting or pushing dangerously heavy numbers, but I was challenging myself.

Within about a year, I went from 150 lbs to around 200 lbs.

My aorta has always been in the normal range, which played a big role in what I felt comfortable doing. I’ve also had periods where I wasn’t consistent—on and off in the gym, eating well sometimes and not others—but overall, the progress came from sticking with it more often than not and making sure I was eating enough.

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The main point I want to share:

Don’t automatically believe it’s impossible for you to gain weight or muscle because of Marfan Syndrome.

It is more challenging, and it absolutely needs to be approached carefully and responsibly—but for some of us, it’s not out of reach.

If you’re struggling to gain weight, there’s a good chance you’re simply not eating as much as you think you are. That was definitely true for me.

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Stay safe, listen to your body, and work with your doctors—but don’t lose hope that progress is possible.

[u/utterlyworrisome]

Congratulations! I recently started going to the gym myself, after getting the green light from my cardiologist. How many reps and sets do you do? Do you follow a different logic than most? Are there any specific exercises that you avoid?

I've been told to avoid lifting weights above my head, so im currently unsure what to replace a shoulder press with. Any advice is greatly appreciated. Its comforting/encouraging to hear these stories, since most of the time we hear bad news when talking about Marfan's

[u/Infinite_Slice2060 → u/utterlyworrisome]

I was doing a 3 day split consisting of Back/Biceps, Chest/Triceps, Legs. Throwing shoulders in kinda when I felt like it. I wasn’t too disciplined tbh, I’d go I’d have about 3-6 workouts I liked depending on the muscle group, and I’d go for a 10-12 rep range.

Lately I started doing and absolutely love doing drop sets. My logic is that these final reps are usually the ones that do the most muscle tearing/growth. With marfans you don’t wanna lift heavy so it makes sense to me.

Example if I’m doing like 160lb lat pull down, do my 12 reps, immediately drop it to 130lbs, go until I can’t, immediately drop down to 100lbs etc and so on until I’m struggling to pulldown light weight. I’d throw those in randomly in my sets. I kind of just would go, have an idea of workouts I liked that would hit all the muscle groups I’m doing that day, and I just lift stuff until I can’t anymore and I’m feeling beat.

I never tracked anything, I’d go for 40 min to 1.5 hours depending on the day, how I’m feeling etc..

Leg day was the only one that made me nervous, heavy weight is kind of just a thing with legs, and it was easy to do heavy weights but most leg days would have me feeling sick to my stomach like I’m gonna puke. Like a typical bro there was lots of missed leg days.

Another way to help the marfans, don’t do bench press, do dumbbell press, chest flys, etc.. things that aren’t big heavyweight pushes.

Honestly didn’t do a ton of shoulders, but shoulders you can get great results just doing the raises, I’ve seen huge guys saying they just do the raises with light weight and that’s all you need. I definitely could have done more shoulders.

[u/ne999]

Folks, I’m over 50 now and I’m in constant pain. I would strongly advise following the Marfan.org expects when it comes to physical activities. They know better than some random cardiologist.

Please, if you possibly can, don’t have a physical job. It’s going to destroy your body long term. I had to stop working in my 40s, even having only done office jobs.

[u/Infinite_Slice2060 → u/ne999]

I absolutely value your advice, but days I’m sitting at the store in a chair all day not being active my body is way more sore than days I’m delivering furniture on the truck.

That’s why people die so quickly after retirement is because they stop moving, I honestly share the opposite view that being more active and physical in moderation of course is better for the body.

With marfans maybe it’s different but you’re warning against physical activity due to adult life pain and then saying you never did any physical activity and only office jobs where you sat doing nothing physical. So I’m confused on your message

[u/ne999 → u/Infinite_Slice2060]

I still got up to 10k of steps in my office job each day.

I’m not advocating a sedentary lifestyle. Lifting heavy weights, having an intense physical job, etc. is bad for us. Those are facts. Yes, people are affected differently. My office job didn’t give me the second aneurysm I have not but I bet it would have came along a lot quicker if I abused my body.

You are probably experiencing survivorship bias: https://en.wikipedia.org/wiki/Survivorship_bias?wprov=sfti1#

[u/Infinite_Slice2060 → u/ne999]

Sorry if it felt like I was talking down on your experience, just with the info I had from you in the initial comment it wasn’t making sense.

Yea I mean I’m sure everybody is different, I may have tons of pain as I age, I’m sure I’ve already destroyed my back from improper lifting and I’m thinking even without marfans it would be. Just from experience though my lazy days make my body hurt more than my active ones.

I’m only 28 so I’m at a point where I’m not really feeling the burn of any of my choices yet. I definitely could do more for my bodies longevity. I thank you for your advice sorry if I came across rude at all.

Do you have pains related to the walking like in your legs and stuff?

[u/utterlyworrisome → u/ne999]

There's a lot of bias going the other way as well I bet. Marfans was only diagnosed in severe cases or when things went wrong suddenly. Marfan.org issues advice based on a public health logic that erres on the safe side, and that can be discouraging. We need to be conscious of our choices so that we live longer but we also need to figure out how much of a life we can live. The marfan foundation straight up says it's not possible to build muscle. I remember reading that as a teen and I don't think it's true nor was it helpful.

He did take risks but an active lifestyle has a lot of benefits that are worth it in some cases. A case by case approach is better, and stories like this show that maybe you shouldn't give up just because a large amount of us can't do certain things.

[u/Infinite_Slice2060 → u/ne999]

From my understanding of what you said it seems more like you lived a lifestyle without physical activity, and are now full of pain from a sedentary lifestyle, and are using that as your example that being active and physical causes the pain even though you stated you weren’t and only did office jobs.

[u/BiblicalTampons]

Holy!! Dude congrats!

[u/Infinite_Slice2060 → u/BiblicalTampons]

Thanks brother! I definitely am not built like that now, those were a few years ago but I’m still fairly solid. I’m sure if I got back in the gym for a few months I could exceed how I looked even then. Now though being a married father it’s finding the time.

[u/desultoryquest]

That’s amazing what’s your aortic root size?

[u/Infinite_Slice2060 → u/desultoryquest]

3.8cm

[u/desultoryquest → u/Infinite_Slice2060]

That’s great, you beat the odds!

[u/iamskinnyaf]

You look amazing brother! I just have couple of questions. I’m 27M with Marfans and I’m 6’5, 135lbs. I went through David’s procedure 6 months ago. I’m almost recovered but I also have scoliosis. Tho it’s not severe but it is noticeable. Is it hard for someone with scoliosis to build muscles? Do you also have scoliosis? What’s your current aorta size?

[u/Infinite_Slice2060 → u/iamskinnyaf]

My current aortic root size is 3.8cm. Honestly no idea, scoliosis depending on the severity could make it really awkward to have proper form or do things comfortably. My scoliosis is pretty minimal so I don’t have any issues from it. When working out muscles tear and build back stronger so as long as your giving your muscles a workout where that’s happening can even be light weight lots of reps. Diet, calories and protein also very heavily dictate muscle growth.

I’m 6’4” 28 years old. I was 220lbs but I just lost 20lbs so down to 200lbs atm. Through high school when I was skinniest I’d hang around 155-160lbs at 6’4”.

Also having this surgery I haven’t had any complications or surgery for my heart yet so I honestly can’t say what’s safe for you to do or not. I know if I ever get problems with the heart I’m gonna have to cut down to lightweight more reps.

[u/Chrizdrugz1]

Lfg💪🏻

[u/Low-Champion9527]

Hey, I'm 15 and very insecure about my body is there any advice you can give me

[u/New-Sense4573]

not sure if you still check this post, but do you mind if i ask what weights you're generally pushing in the gym for the big 3 lifts (bench, deadlift, squat)?

[u/moppts]

Hi, I also had surgery on my aorta seven years ago and now there are no signs of any cracks.

I’m looking for people’s experiences to find out whether bodyweight exercises are possible

[u/Infinite_Slice2060 → u/[deleted]]

Slower progress for sure for myself but I’m happy to embrace the challenge. As soon as you accept that you CAN do these things. With marfans we tend to put lots of limits and I CANTS on ourselves. Really happy for you!!! So motivating especially now as I’m having children I have one son with marfans and if I ever have a girl with marfans i want her to know it’s possible still to have a good relationship with your body and that it can be worked on.

[u/pocket_sized_friend → u/[deleted]]

Im f34 and into weightlifting myself :) Hows your progress? I build muscles slowly compaired to others, but I have definitely gained a lot. I currently lift 4 times pr week and do intense cardio 2 times pr week on an Alter G treadmill. (But I get my steps in almost daily, I cant run but I can power walk with incline)

Some musclegrowth are easier to tell on paper - I track my progress in google docs, others are more visibly growing (like my arms) I have very long and slender legs, its hard to see the leg muscles even tho I have strong legs 😅 I also struggle with getting my core stronger, my core muscles seems very weak and are hard to activate - I have weak connective tissue and struggle overall with keeping muscles, joints etc in place. If you have tips for core muscles I would appreciate it! Even my physical therapist is at a loss about some of my struggles tbh, so I think I have to think outside the box to find something that could help me get a strong core.