I’m in pain 24/7 and have been in and out of a wheelchair/crutches/using various braces since the age of 15. I’m never not in pain and frequently told by people that I’m too young to be hurting this bad all the time (I’m in my early 30s). I also have ME/CFS, fibromyalgia, POTS, arthritis, DDD, craniocervical instability, chronic migraines, and more.
I have a connective tissue syndrome & a handful of chronic illnesses, AMA
r/AMA
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Fellow chronic pain person here in their early 30s, although not quite as severe- I find myself struggling a lot with knowing I’ll probably never get to a point in my life where I’m not in some level of pain 24/7. What motivates you to keep your head up when things seem really bad?
First: giving you a full-hearted hug. You have so many diagnoses and it must have been a journey to map what’s happening internally. Do you think there’s a connection between their co-occurance?
How do you find the courage? What gives your spirit light? My little brother suffered from connective tissue disorder (Marfan’s) and succumbed to depression last year. I miss him very much.
I don’t really have a question, but just wanted to say I also have undifferentiated connective tissue disease, Hashimoto’s, pmdd/pme, hsv1&2, and chronic migraine. I’m currently in luteal and everything hurts, no energy. Wishing you the best!!
I don’t have any questions but I share most of your diagnoses including EDS. From one bendy friendy to another, I hope your joints treat you well today, I hope you stay on your feet & I hope you’ve got some extra spoons to do all the things you wanna do 🤘🏻
Hello, I also have a chronic illness! I was wondering what the diagnosing process was like for you. I’ve lurked in other threads and subreddits about chronic illnesses and it feels like I got lucky with how fast I got a diagnosis. I imagine for all the illnesses you have, maybe it was a harder process?
Are you hopeful for some form of effective treatment (I didn’t say “cure”) in your lifetime?
What is the stupidest thing a medical provider has ever said to you?
I’m also an EDS/fibromyalgia chronic pain frequent flyer since I was 14, and at some point, I started a list. Current gold medalists are tied between a doctor who responded to a description of my symptoms with “That would be very painful if it were true” and a nurse who looked at my dislocated ankle and said “well stop holding it that way.” I can laugh now but I was infuriated at the time
I have cfs fibromyalgia migraines and period issues too with ocd. How do you sustain a career ..I genuinely need advice
Has your knee ever popped out before if so what’s the most inconvenient time it happened I have hyper mobility issues and mine popped out while I was on the toilet
I have EDS
Another (severe) ME/CFS sufferer here- all I can say is I’m so sorry. I hope you have an amazing day, week, and year, and that life treats you kindly from this day on
I’m so sorry for all the pain you are in, I can’t imagine going through that all day every day. what medications do you take daily? I often worry I take too many medications due to long-term illnesses I have.