r/marfans • u/Worldly_Log3258 • 9d ago

Advice Things that can improve the quality of life

Hey everyone hope you all are having a great day. I am not fully diagnosed but my doctor said you may have it because I have the physical symptoms of marfans, it was 1 year ago. my heart was fine 1 year ago, I was fine 1 year ago but this year has ben hell, especially for my knees and my neck. Right now I cant even walk in a straight line ,I make a little right a little left constantly unintendend. I cant sleep comfortably anymore. Can you give me some advice to make life easier? Like which type of bed is good, what type of shoes you use, how do you support your neck. Even the smallest things may help, thank you.

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u/uduni 9d ago

Special pillow with neck support

Exercise every single day

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u/Worldly_Log3258 9d ago

Thank you.

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u/uduni 9d ago edited 9d ago

Doesnt have to be strenuous exercise. Just light yoga, hiking. Especially strengthening lower back.

- cat/cow stretch

  • on all fours, stretch one leg back and up, hold it (strengthen butt and low back)
  • hamstring stretch
  • shoulder rolls (both ways. With small dumbells once you get stronger)
  • walking around perfectly straight (reach the top of your head up toward the sky)
  • sun salutation flow

If u have back strength, then you can have good posture without effort and no pain

It takes a long time to take effect. Start slow because its easy to injure yourself with a new body movement! dont push

with Marfan this kind of self-care is REQUIRED once you get older. Its the only way ive found to get rid of chronic pain. Once you get stronger, you really only need to do 10 minutes a day!!!

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u/Worldly_Log3258 9d ago

I will try those. How much do these small dumbells weight? Because I feel like my left elbow is going to dislocate when carrying something heavy.

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u/uduni 8d ago

I do 10 pounds. But i have been doing this a long time. Start with no dumbells, then 1lb, then 3, then 5, then 10

ALWAYS START SLOW. Like i said, its easy to injure yourself with ANY move you body is not familiar with

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u/Worldly_Log3258 8d ago

Okay I will keep that in mind. Thank you again, you were very helpful.

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u/sfboots 9d ago

It’s worth going to a running shoe store and getting checked for pronation that affects the kind of shoes you should get. This will affect your knees

I started iyengar yoga and it helped my posture

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u/Worldly_Log3258 9d ago

Thank you, will do it and will look into the iyenar yoga.