16 Things People With Complex Regional Pain Syndrome Want to Post on Facebook, but Don't

Complex regional pain syndrome (CRPS) is a rare neuro-inflammatory disorder, usually caused by a muscoloskeletal injury, surgery, or damage to the nerves. The nerves constantly misfire, resulting in persistent, burning pain. It is one of the most painful conditions known, ranking at a 42/50 on the McGill University Pain Scale.

The intense, often indescribable pain can have a profound effect on quality of life. CRPS has been dubbed as the “suicide disease,” in part due to a lack of appropriate treatments to properly manage these levels of pain.

It can be hard to connect, find support, and share what you’re going through with others, especially when you’re in constant, unbearable pain. So we asked our community what honest statuses they’d like to post to Facebook, but don’t.

Here’s what our communities shared with us:

1. “Just because I’m smiling, doesn’t mean I’m not in a shitload of pain.” — Kylie M.
2. “I know how to ‘do’ CRPS, trust me. The reasons you don’t see the flares, the vomiting, the desperation, the pleading and bargaining with my leg, are many. It’s taken me eight long years of hard work to get to this point in my condition, so please don’t undermine that work by assuming I’m fine because I have learned how to hide the worst from you.” — Melissa M.
3.  “If everyone could only understand the severity of this pain that I live with 24/7, then they might be more compassionate. But until they experience anything close to this, they just need to zip their lips.” — Tina S.
4. “Please stop saying that you don’t know how I do it. Pain is as normal for me as breathing is for you. If I screamed all the time, I’d never get anything done.” — Sally F.
5.  “Please understand that pain changes someone. When I can’t make it somewhere, or don’t want to talk for too long, or seem disinterested, it’s likely not any of these things. It’s usually because pain is always on the forefront of my mind.” — Samantha F.
6. “Every person experiences pain in a different way, and to a different degree. While many people go through intense pain from time to time, it is not fair, accurate, or polite, to compare CRPS to any other type of pain that currently exists. We don’t want to hear how ‘lucky’ we are to not have some terminal condition, or that we should ‘be thankful’ that it’s ‘only pain’ and ‘it’ll go away at some point.’ CRPS is forever.” — Steve R.
7. “Although many people know I’m in pain, many don’t understand the severity of it. This is the worst pain I could possibly imagine, and I wouldn’t wish it on my worst enemy. Please go look up the McGill Pain Scale. [According to the scale] CRPS is the most painful disease known to man, and yet there is no cure. Very few treatments exist that actually might do a small bit to lessen a little pain.” — Shannon P.
8. “I’ve tried everything, trust me. Please stop suggesting I try this new diet, pill, treatment, or person who ‘works wonders.’ Please stop comparing my condition to fibromyalgia; it isn’t the same.” — Rebecca R.
9. “Every day is hard for someone in pain, and it is no different living with CRPS. Because what we live with is not visible, the person you see on the street could be in chronic pain and you wouldn’t even know. So make sure to leave a smile on every face you see because that person might not have smiled today.” – Danna G.
10. “CRPS is horrible pain, but it’s more than that. It takes your identity away. My life is only a faint shadow of what it used to be. I used to be a teacher. I used to exercise regularly and weigh less. I had a really sharp brain with a great memory, but not anymore. I used to be married. I’m very alone now.” – Jason G.
11. “I used to be fun, capable, and social. Nine long years of this has worn me down. I dread the idea of someone inviting me somewhere, yet I hate being lonely.” — Ruth H.
12. “While my makeup, hair, and outfit are on point, please do not confuse my exterior with the ‘silent killer’ on the inside. I have so much to live for, even if some days my intense pain makes me feel like I want to escape this earth.” — Adrienne R.
13. “I can’t believe the body can produce this much pain… except, I know it can, because it has.” — Krista B.
14. “It means so much if someone actually googles our disease and truly makes an effort to understand.” — Tina M.
15.  “I feel like I’m burning alive 24/7, but I don’t complain as much as I wish I could because I already feel like I’ve become a burden to all my family and loved ones.” — Marissa R.
16. “I often question myself, wondering if this indescribable pain is ‘normal’ or if it’s all in my head — but in almost the same breath, I remind myself that this pain is real and I give myself permission to let others know that this is my daily fight.” — Kelsey L.

Do you have complex regional pain syndrome? What’s one Facebook status you’d like to post, but don’t?