Living with a Rare Bone Disease: Seeking Advice

Hi, I'm 47 with a rare bone disease that's forced me to quit working and undergo multiple ortho surgeries. since 2011 I've had 3 ankle surgeries, 2 knee surgeries (including a knee replacement), a gi bleed from the nsaids, a dvt, ... I struggle with chronic exhaustion. does anyone else have this problem or have any tips or suggestions?

Your answer

wise

2y ago

I'm in a similar boat with a rare heart problem, on top of several other things. It's truly exhausting, these days my SOUL feels tired. my advice: sleep when you're tired, eat when you're hungry, and do whatever you can to feel any semblance of physical comfort. buy a lot of pillows. keep your favorite drink stocked in the kitchen. splurge a little on something forp a hobby. when the big picture sucks ass with no hope of improvement any time soon, the little things are that much more important for you to focus on

GiGiBug

2y ago

I am so sorry. Gosh. I have a lot going on myself too. I am finally going to Mayo Clinic in Jacksonville Florida on Monday June 6th for an overhaul from a team of Dr's. They then send all their recommendations back to my Dr's telling them what they would and wouldn't do different. You may look into something like this.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

Alike is a transformative platform that goes beyond just bringing together patients; it meticulously connects individuals based on multiple critical factors, such as age, gender, comorbidities, medications, diet, and more, fostering a community of knowledge, support and empathy.

About Alike Wisdom Blog FAQ Editorial Team All Conditions All Posts All Communities

Your Privacy Stories Community Guidelines Terms of Use Privacy Policy Helplines Contact Us Group Chats Guidelines