# Marfan Syndrome shock!



## Mind2muscle (Feb 2, 2020)

Hey guys!  Been a member here since the early days of SI!  Been weight training since the age of 14.  I’m 35 now.  Have a couple cycles under my belt.  Heaviest I’ve ever been was 208 at 5’10”.  Always have had a really tough time building muscle.  Now I know why.  I’ve recently been diagnosed with Marfan Syndrome.  It is a connective tissue disorder affecting the eyes joints muscle and heart.  I have always had significant eye problems joint pain and an inability to gain a lot of weight.  Well I recently found out I have a dilated aortic root and I’m being told not to lift anything over 20lbs for the rest of my life.  I am in utter shock.  Weight training has been my life and my passion.  The risk is the aortic arch could continue to grow and burst if I continue heavy lifting.  I have a family with one young son and another on the way and don’t want to take the risk.  Just looking for support I guess as most people just tell me screw the weights.  Thanks!


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## Rydog (Feb 2, 2020)

Sorry to hear that bro.  Coaching or training others can be a great way to stay connected to the lifestyle.  

I was a personal trainer years ago and it can be just as rewarding helping and watching others on their fitness journey.  Also there are many options to stay fit besides lifting weights.


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## DEADlifter (Feb 2, 2020)

Sorry to hear that, sir.  God bless you and your family.


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## Boytoy (Feb 2, 2020)

My heart goes out to you man. Really sorry.  Is tough to have to give up something you love. Hope you can find a new hobby or something else that you enjoy doing as much as the iron, if you lay it down.  Know we are here if you need anything.


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## NbleSavage (Feb 2, 2020)

Like was said, very sorry to learn this, Mate. Look fer some other mediums to stay fit - yoga has always fascinated me personally, and is much harder than it looks. How much cardio can ye do according to yer doc? Any limits there? Triathletes are hardcore. Boxing? Thai? MMA? Just cuz' ye can't lift heavy don't mean ye have to stop training. Ye'll figure something out - and it might take one or two tries with some new shite & thats all good as well, all part of the process.

Stay safe, Mate. Ye got this.


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## snake (Feb 2, 2020)

Prayers go out for ya my man. I hope there is something science and modern medicine can do for you. It always breaks my heart to see someone who wants to do something regardless of the goal, to be limited. 

Then there's the family. You're goal now is to be around as long as you can. Trust me, no child really cares what their Dad can bench. I hope this has very little effect on your every day activity. I have to say, you're a better man than me because I'd be a hot useless mess.


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## Mind2muscle (Feb 2, 2020)

Thanks guys for the positive responses and words of encouragement.  I’m in the very early stages of diagnosis.  I’ve been told to limit lifting to 20lbs until further testing is done.  What I need to avoid I guess is elevating my blood pressure which includes avoiding the Valsalva movement.


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## Sicwun88 (Feb 2, 2020)

Sorry to hear that,never something a couch potato gets,stay strong!


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## Mind2muscle (Feb 2, 2020)

snake said:


> Prayers go out for ya my man. I hope there is something science and modern medicine can do for you. It always breaks my heart to see someone who wants to do something regardless of the goal, to be limited.
> 
> Then there's the family. You're goal now is to be around as long as you can. Trust me, no child really cares what their Dad can bench. I hope this has very little effect on your every day activity. I have to say, you're a better man than me because I'd be a hot useless mess.



Oh I’m definitely a disaster Snake.  Feels like I’m losing my sense of identity but my son means the world to me.  I have to be here as long as I can for him.


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## transcend2007 (Feb 2, 2020)

Sorry to hear your news ... my first thought is to get a 2nd option ... I've never heard of this affliction ... the 2nd thing I would recommend once confirmed - research what others your age and shape are doing dealing with this (and getting positive results) ... 3rd ... do not expect doctors to solve your problems ... you must be very actively engaged in your own treatment ... please keep us posted and just know prayers are going to you and your family ...


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## ComeBacKid85 (Feb 2, 2020)

Sorry to hear bro. Prayers for you and your family. Kids are the best. Real men do what ever it takes for their Family .... Best Wishes :32 (20):


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## Mind2muscle (Feb 2, 2020)

transcend2007 said:


> Sorry to hear your news ... my first thought is to get a 2nd option ... I've never heard of this affliction ... the 2nd thing I would recommend once confirmed - research what others your age and shape are doing dealing with this (and getting positive results) ... 3rd ... do not expect doctors to solve your problems ... you must be very actively engaged in your own treatment ... please keep us posted and just know prayers are going to you and your family ...



Thanks transcend!  Definitely have to be your own advocate.  I work in the medical field so I understand anatomy physiology and medical terminology.  With Marfans syndrome the risk is aortic dilation of the aortic arch which over time can cause an aneurism and consequently aortic dissection which can be fatal.  Pretty scary.


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## Mind2muscle (Feb 2, 2020)

ComeBacKid85 said:


> Sorry to hear bro. Prayers for you and your family. Kids are the best. Real men do what ever it takes for their Family .... Best Wishes :32 (20):



Exactly!


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## CJ (Feb 2, 2020)

So sorry to hear this bud. I hope it'll work out positively for you, and you'll find another passion to sink your everything into. I vote for guitar lessons.


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## Mind2muscle (Feb 2, 2020)

CJ275 said:


> So sorry to hear this bud. I hope it'll work out positively for you, and you'll find another passion to sink your everything into. I vote for guitar lessons.



It’s funny you say that because I used to play electric in my teens.  Been thinking about picking it back up lately.  Guess I’ll have more free time now.


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## dk8594 (Feb 2, 2020)

I get it.  A lot of my self identity is tied to weight lifting ( some would say too much) and if I was told I couldn’t do it I am not sure if I would know who I am.

I know the day will come when I am not able to lift the way I want to and hope that I will be able to transition to something else that I find as rewarding.  

Hope you find that thing for you.


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## Gadawg (Feb 2, 2020)

Very sorry to hear man. I have an inlaw who has it and his father did too. They believe Lincoln had it I think. 

You are obviously less afflicted than a lot of people.  There are TONS of other passions out there than this stuff man.  If you havent watched the documentary on Dorian Yates “into the shadow”, you really should. Lifestyle changes can be hugely positive!


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## Mind2muscle (Feb 2, 2020)

Gadawg said:


> Very sorry to hear man. I have an inlaw who has it and his father did too. They believe Lincoln had it I think.
> 
> You are obviously less afflicted than a lot of people.  There are TONS of other passions out there than this stuff man.  If you havent watched the documentary on Dorian Yates “into the shadow”, you really should. Lifestyle changes can be hugely positive!



Lincoln did have it!  Marfans definitely has a varying range because it is a syndrome.  I guess I have been lucky to have made it this far.  Some are much more afflicted than I am.


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## Seeker (Feb 2, 2020)

Sorry to hear, man. Fortunately, there are other options available for you to pursue in health.


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## Gadawg (Feb 3, 2020)

Mind2muscle said:


> Lincoln did have it!  Marfans definitely has a varying range because it is a syndrome.  I guess I have been lucky to have made it this far.  Some are much more afflicted than I am.




I dont have aspirations to build any more muscle, lose fat, powerlift or anything else but I stick around here a bit for the community.  Whatever you choose to pursue, I hope you will do the same.


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## Jin (Feb 3, 2020)

I cannot imagine having to stop training. So I cannot imagine how you are feeling. Sorry you have to go through this. 

That being said. 

Weightlifting doesn’t define you, but how you handle this will. 

Choose to become a stronger, more fortified man because of this and you will.


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## silvereyes87 (Feb 3, 2020)

Can you still do bodyweight stuff? If that's possible I'd become a fit motherfuker off of that.


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## Mind2muscle (Feb 3, 2020)

Jin said:


> I cannot imagine having to stop training. So I cannot imagine how you are feeling. Sorry you have to go through this.
> 
> That being said.
> 
> ...



Words of wisdom Jin!  Very inspiring words.  Thank you sir.


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## Mind2muscle (Feb 3, 2020)

silvereyes87 said:


> Can you still do bodyweight stuff? If that's possible I'd become a fit motherfuker off of that.



Not 100% sure yet as I am waiting to see a specialist who deals with Marfan patients on a daily basis.  What I’m told right now is nothing over 20lbs.  The more I research the more it sounds like what causes the spike in blood pressure and possible aortic dissection is the Valsalva maneuver ie: holding your breath or bearing down.


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## Raider (Feb 3, 2020)

First off , so sorry that you’re going through this, but being there for your family is definitely the most important thing. I’d definitely get a second opinion, can’t hurt. Also, is this perhaps something that can be corrected with surgery? All the best going forward my man!!


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## Gadawg (Feb 3, 2020)

With the advances they are making in gene manipulation medicine, I would bet we will see a cure for this in our lifetime also.


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## Mind2muscle (Feb 3, 2020)

Gadawg said:


> With the advances they are making in gene manipulation medicine, I would bet we will see a cure for this in our lifetime also.



It’s already happening.  People who have Marfans can have gene editing done to prevent their offspring from having it.  I wish I looked into this when I was younger.  Just hoping my son doesn’t have it.


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## Grizzly911 (Feb 3, 2020)

Mind2muscle said:


> Hey guys!  Been a member here since the early days of SI!  Been weight training since the age of 14.  I’m 35 now.  Have a couple cycles under my belt.  Heaviest I’ve ever been was 208 at 5’10”.  Always have had a really tough time building muscle.  Now I know why.  I’ve recently been diagnosed with Marfan Syndrome.  It is a connective tissue disorder affecting the eyes joints muscle and heart.  I have always had significant eye problems joint pain and an inability to gain a lot of weight.  Well I recently found out I have a dilated aortic root and I’m being told not to lift anything over 20lbs for the rest of my life.  I am in utter shock.  Weight training has been my life and my passion.  The risk is the aortic arch could continue to grow and burst if I continue heavy lifting.  I have a family with one young son and another on the way and don’t want to take the risk.  Just looking for support I guess as most people just tell me screw the weights.  Thanks!




Welcome to the UG, m2m. Have you found out if there is any kind of surgery for your condition? Also, has you doctor said if you can do any kind of cardio or calisthenics exercises you can do?


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## Mind2muscle (Feb 3, 2020)

Grizzly911 said:


> Welcome to the UG, m2m. Have you found out if there is any kind of surgery for your condition? Also, has you doctor said if you can do any kind of cardio or calisthenics exercises you can do?



Surgery if aortic arch gets to 4.5.  Cardio and some calisthenics as long as heart rate and BP don’t get elevated.


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## Grizzly911 (Feb 3, 2020)

Mind2muscle said:


> Surgery if aortic arch gets to 4.5.  Cardio and some calisthenics as long as heart rate and BP don’t get elevated.



Sounds like you have some leeway there!


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## Mind2muscle (Feb 18, 2020)

Only been a week or 2 of no heavy lifting and I’m struggling mentally.  Been at this game for more than half of my life.  I’ve been going to the gym and lifting no more than 50lbs.  I’m not getting the same satisfaction.  This is what kept me somewhat sane.  Also Dropping weight because what’s the point in eating to gain when I can’t lift heavy.  Looking for advice/input.  Thanks guys and gals.


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## Jin (Feb 18, 2020)

Mind2muscle said:


> Only been a week or 2 of no heavy lifting and I’m struggling mentally.  Been at this game for more than half of my life.  I’ve been going to the gym and lifting no more than 50lbs.  I’m not getting the same satisfaction.  This is what kept me somewhat sane.  Also Dropping weight because what’s the point in eating to gain when I can’t lift heavy.  Looking for advice/input.  Thanks guys and gals.



First of all: your situation sucks. It’s ok to be disappointed and upset. But those emotions will not be ultimately beneficial. 

-Gratitude journal: 5 things everyday you are grateful for. 

-Meditation: either guided or try “two bells”.

-Perspective: help people in a worse situation than you are in. 

-Nature: escape man made reality and get into something a little more inspired. 

-Cardio: yeah, it’s no substitute for weights, but it will help your body to produce helpful responses/encourage better mood. 

All these things require work. If you don’t actively do something about your dissatisfaction, don’t expect it to go away. 

“Objective judgement, now, at this very moment. 
Unselfish action, now, at this very moment. 
Willing acceptance-now, at this very moment- *of all external events.
*That’s all you need.”

     -Marcus Aurelius


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## Mind2muscle (Feb 18, 2020)

Jin said:


> First of all: your situation sucks. It’s ok to be disappointed and upset. But those emotions will not be ultimately beneficial.
> 
> -Gratitude journal: 5 things everyday you are grateful for.
> 
> ...



That’s such great advice Jin!  Definitely all things I’ve been thinking about doing.  Guess I just have to start.  Thanks man!


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