Living with Chronic Illness: My Struggle with CRPS, POTS, and PTSD

Hey Elle! I’m in college and was diagnosed in highschool with AMPS (almost the same as CRPS). I have found in some ways it gets better. The pain will still be there mentally and physically but later down the road you will found what strategies, treatments and mindsets that will help to reduce the pain. In early Jan 2020 I had to come home from college because my mental and physical pain was so severe. It wasn’t the first time dealing with these pains but what I had used to do before stopped working and it took about 6 months to find some new strategies/ meds to help. In all honesty there were days I just wanted everything to be over but I am here to tell you there is some hope. There will be days that your “Go to” pain reducers / relievers don’t help and sometimes you just have to succumb to the pain. But just as there are the super bad days nothing works, there will be days your coping strategies do work! Some of my go to strategies for the bad days mentally, are time outside in nature taking pictures ( I like photography), singing music alone in the car that reflects the emotions I am feeling, writing poetry or just getting all I feel out on a piece of paper, just allowing myself to cry if I feel that is what I need. Some of the same remain true to for my physical pain especially the poetry but specific to my pain that helps is massage, gentle stretching, heat, (depending on how bad) easy walking / bike riding. With amps and I believe CRPS, lactic acid build up (this is naturally occurring and isn’t just for those that work out) in muscles contributes to the pain so bringing blood to the area so it can get out can help a little. I hope this helps.

Hey Elle! I’m in college but when my symptoms/illnesses came on, I was in high school. I’m sad to say, I definitely still feel the way you do. Finding support online (like Instagram community accounts) has been really helpful on making me feel less alone in this. The truth is, when you have a chronic illness, your body will always be the “enemy.” It never really goes away. But you can absolutely learn to live and thrive in the body you have! I’ve learned that coming to terms with my illnesses and fully embracing how my life has to be now- has been very helpful. I get excited to make accommodations for myself now because I know my body needs and deserves it! It makes you no less of a person for needing accommodations. And remember! - You have an illness, but your illness does not have you. There are so many out there who have been through this too. You’ve got this! ❤️

Hey! I’m marrow (they/them, out of college) - in my experience, it comes in waves, but mostly yes, I’ve been able to get on friendly terms with both (though we still have our arguments)

Hi Elle! I have POTS and PTSD among other things as well! Oh boy do I relate to that. It’s hard to feel safe and trust yourself when you’re at a point that’s so frustrating and long. That said, I’m glad you are here ❤️