Ever have one of those with your CRPS that you wished just 1 person in your world of people could understand truly what it was like to live with CRPS ( horrible flare day ) & lose a tooth filling after it's much too late to get into the dentist ( so let's have added pain yay ) ?
Chronic Generalized pain
Reflex sympathetic dystrophy
Omg I say that all the time. Sometimes I say ppl need to walk in my shoes
100%. The pin started when I️ was 6, and I️ was diagnosed when I️ was 7 and until I️ got 6 nerve blocks when I️ was 12, my mom didn’t believe me. I️ used to tell her “I️ wish that for ten minutes, you felt the pain I️ feel constantly.”
I’m lucky enough to have a best friend that says things to me like “I️ just pulled a muscle in my thigh and can barely walk and I️ was just thinking, “damn… Maggie lives with worse pain than this 24/7.” I️ have no idea how you do it, but you’re amazing.”
You may have to search a bit, but you’ll find your cheerleaders. People who believe you to the point that you wouldn’t WANT them to feel it, people that cheer you on just for showering and doing the dishes. People who understand that our lives are objectively harder.
The issue is that some people don't believe what they can't see. My hubs defends me well.
If you were gushing blood, needed a dressing etc people would "get" it.
I also find, I just need someone who has a lot of pain, just to commiserate together. I have a friend w/RA. She helps.
I have found several people on Instagram who have the same conditions. 🤔
I hate it when you see a new doctor or when your in the hospital. The doctors look at you like you can't be in so much pain. They try giving you Tylenol for the pain doesn't even touch the pain. Your inpatient for a heart issue and they do not want to give you your normal meds. So your heart reacts to the pain. Because at this point they put you into a bad flare. They can't get you out of afib till they lower the pain. They do not listen to you and I'm so tired of 20 million doctors coming in start just being brief with your answers. In this last year I've bin hospitalized 6 times for my heart. I ask them does it have anything to do with my Dysautonomia or CRPS. They just say they do not know enough about crps. So most doctors usually just do not touch crps or the Dysautonomia frustrates me. I told my husband I'm not going back to the hospital. Just let me die so I can be out of pain.
I know exactly what you mean… I refuse to go to hospital anymore… tired of having to explain to medical professionals what my condition is AND then to be looked at like or treated like an addict. Frustrating and exhausting.
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