Dealing with Joint Pain in Marfan Syndrome

oh shoot man yeah, joint issues are my #1 symptom. my advice: 1- don’t listen to all the people who tell you to exercise super frequently- as far as exercise goes, you’re better off doing gentle stretches and walking a little as often as you can manage. a lot of vigorous exercise just aggravates the pain and can make your joints looser. 2- you may want to seek out orthopedic help just to see if they can maybe prescribe you some pain medication. I take meloxicam as needed and it helps me get through tougher days without being on really strong meds, they don’t give me any brain fog or tiredness. 3- I also want to be sure to say, don’t be afraid to seek out mobility aids if you’re at a place where you need them. look into a cane or some forearm crutches if walking is painful for you, maybe braces if you have specific joints that are painful for you. it can be a big step but it can make life a lot easier day-to-day. 4- on a psychological level, give yourself space to acknowledge how your pain impacts you. chronic pain can make you tired or affect your brain, making you more confused or forgetful. it’s okay to need a little more time to rest; being in pain takes a lot of energy out of you. it’s hard out here but there are things that can make it a little easier. it’s gonna be alright ❤️