Marfan Syndrome Support Group

Hi I was diagnosed with marfans 3 years ago. 3 weeks later I was in for open heart surgery to fix a part of my aorta. It has been an interesting thing to cope with. I have been doing pretty good but the last 6 months I have been feeling super tired and I have been having chest pains alot the other day I went to the ER but they couldn't find anything. I am starting to feel like mabey I am crazy or something. Reading on here it made me feel a little better that others have dealt with the tiredness. My brothers have this too we talk a little about it, but we are all new to this kind of. we have never met anyone else or talked to anyone else who has this condition. I love my brothers but they don't like to talk about it much. I feel frusterated and kind of sad. I used to be really active before I was diagnosed. And now I am not sure how much is too much exercise, I feel I get different answers from my Dr everytime. Anyways thanks for listening.

Hi Algal--- You are not crazy. I, as many others on here, deal with tiredness, achy joints, pains and what have you's. Truthfully I don't think the doctors know all the issues that each of us deal with. We can't be lumped into one bunch. There are a lot of common issues we share but then I think there are issues that are based individually.

I was 28 when I had my aortic root and valve replaced, along with the mitral valve. I was diagnosed when I was 15. So I was never that active. I was told walking and swimming was good exercise for me. But no weight lifting, running or contact sports.

I come from a family of 6 kids. I am the only one to actually have Marfans but my younger brother has characteristics. I went for many years not talking to anyone who had marfans. But have found many friends on here who can truly support me and really know what to say. Because they have been thru it too.

Hang in there and know that I am here to talk. I am also on facebook. Take Care and God Bless You.

Erica

Thank you for responding Erika, you are officially the first person besides my brothers that I have talked to now, who has Mafan's Do they know if your condition was hereditary? How do you cope with the your tiredness? If you don't mind me asking? I have been feeling like mabey I have depression or something because of the tiredness. But it could just be the cold weather. I don't feel really depressed just want to go to sleep every time I sit down. I also have two small children so that adds to the tiredness too I never have been one who likes to complain, but I have noticed some definate changes in my health, recently I found out my mitral valve is leaking moderatly, they don't need to operate yet so that is good because heart surgery is not fun. Thank you again for taking the time to respond

Hello! Yes my condition- Marfan's is hereditary. It came thru my dad's side of the family.

The tiredness-- now that is all too familiar to me. I am always tired. Some days I can fight thru it and others well I just go lay down and sleep. I'm usually in bed by 730pm and up by 600am. But nap frequently. Now I will admit some of it is due to the meds I'm on. But I have to be on them.

Depression--- another one that I am all too familiar with. I am chronically depressed due to Marfan's. So I am on meds for that. I also suffer anxiety/panic attacks. ( on meds for that too! )

My mitral valve was shot it was a 4++. No saving it. So when they found that my aneurysm had grown they decided to go ahead and replace it too. yeah surgery isn't fun-- but atleast I'm still here and able to help out a fellow Marfan client.

I am almost 40 now and have been thru a little of what some people with Marfan's go through. I myself have no children-- but have a wonderful step son. So I was blessed after all.

Take Care friend. Always here! Erica

hi

my name is jackie

I find that the pain and the tiredness together makes it hard to get through the day sometimes and working customer service can be stressful but I try to fight through the tired by doing invoices in the morning and less concentrating tasks in the afternoon, I have also found this site a benefit and having others to talk to

send me a pm ig you want to tal;k at anytime

I am glad you are here too! Lots of meds! I am sorry, I feel I am getting there too. My Dr thinks I am going through Post Trumatic Stress Disorder. Had my first panic attack last week. It was not fun, My chest was hurting and I thought I was going to die or something. Talked to my OB and she said exercise and perscribed an anti anxiety med. I am leary about taking it right now I am just on a beta blocker, And ever since they put me on it I am way more tired. Thanks for the info on the tiredness, I have been feeling guilty about taking naps when my baby does but now I won't also I get dizzy if I get too hot or stand to quickly. They keep lowering the dose, But now they can't lower any more. My brothers complain of the dizziness too. there are 5 kids in my family and 4 of us have it. My Dad is boarderline. So it is interesting that so many of us have it.

That is great that you have a step son! You sound like a brave woman! You have been through alot! Thank you so much for taking the time to talk to me! I feel better already

And Thank you Jackie for responding. That is good advice about getting more important things done in the morning. I am going to make some goals now It is so nice to talk to people who know what I am going through. Thank you.

You are welcome that is how I feel and I have made some really good friends here on mdj, my best friend is stillstandin and what can I say we just clicked straight away and have become firm friends, it is good to know that other people understand, my work colleagues as good as they are can't understand what I am going through as they are not going through but I talk to me friends here and know that I am talking to people that understand

if you wish to talk at anytime send me a pm, I tend to check my messages most days and if there is anything I can do to help then just ask

Post edited by: jackie1979, at: 05/06/2010 11:44 AM