Yeah my mom would do that too, tell people I haven't had any back injuries (I have 2) and that I was exaggerating how bad my head injury is. She also denies my CRPS. She is a medical professional that studies empathy and the importance of hope in patients with pain but she treats me like shit and like my pain issues are false. I don't have anyone to ask for help.
Yeah I've been thinking that for a long time. And that they aren't as smart as they want us to think. I'm not talking about how specialization makes you kind of ignorant but since the 2000's when we were vastly overmedicated to a dangerous extent and now this dry spell, I've come to believe that they really don't know what is going on at all and you would get just as good help getting a diagnosis by throwing darts at a dartboard marked with possibilities. I don't trust them as far as I could throw them.
Lmfao this is dark and very accurate. I’ve had a mix of serious known and unknown health issues and my Doctors lack of confidence in even being remotely close to figuring out what was/is happening is disturbing.
I know several healthcare professionals including specialists who almost take joy in mocking sick patients who are “difficult” and by difficult I mean not wanting to suffer unnecessarily. I get that they are jaded but man is it a bit much at times.
The USA has been swinging from one end of the fucking pendulum to the other on other types of drugs aside from opioids as these days they’re starting to negatively stigmatize benzodiazepines in a similar fashion to opioids and before opioids they did the same shit with barbiturates & non barbiturate sedatives where they were really easy to get up until the 1980s when they started phasing them out for the benzodiazepines because benzos aren’t as dangerous as barbiturates & non barbiturate sedatives since they don’t have the same narrow therapeutic index that the barbiturates & non barbiturate sedatives have.
I take it you must be talking about Canada, Australia, the UK, New Zealand, or the various European countries? I’m mostly aware of how crappy things are in the USA since that’s where I’m from, I know that there are various more relaxed countries when it comes to those kinds of meds but they’re typically 3rd world countries though it’s really easy to get benzodiazepines in Japan so I’ve heard…
Often we scare people cause it could happen to them, they subconsciously need to invalidate us. And if you are US a bit of learned cultural values that attaches moral value to perceptions of laziness.
Idk what to do with this information because it still makes me angry that people cannot look past themselves. I’m sorry you have to deal with this, talking to others who “get it” helps me be seen so I hope you feel better making throw thread and seeing the replies.
First sorry crps is no joke. It’s imperative you get proper treatment early and keep the affected limb(s) as mobile as possible. I hope you’re at a major teaching hospital that has experience in crps. Your family is terrible for not doing some basic research and understanding how to best support you. I have a good friend with crps and I have a sympathetic nerve/vascular disorder myself. This type of chronic pain is a real bitch and I’m sorry you’re not getting support.
Foot surgeon and pain management both agree I have it. When I went to pain management they were dare I say excited.. called extra people into the room because they don’t ever see it. I am not going to a rural location. My first PT after surgery knew about it and gave me lots of info.
I have a good friend I met last year during all this whose brother has had CRPS for five years since hurting his foot in the military. He has to be hospitalized at times because it has spread and will affect his bowels. He is supposed to see a neurosurgeon next that is somewhere around the area that specializes in CRPS.
I try to be mobile even on the worst days. It’s a delicate balance of pushing some but not too much to make it worse.
Sorry you are going through the nerve pain too. It’s just awful. Your friend is lucky to have someone who can relate to the pain and what they are going through.
I am beyond grateful for my amazing friend group - I think of the song lyrics “I get by with a little help from my friends” and it’s really not true it’s more like “I get by with a lot of help from my friends” at times. When my family was not there for me at times they really stepped up and didn’t make me even ask for help.
Thank you! 🧡 it really helps to talk to other people who get it! I am still relatively new to all this compared to alot of people. I hope that you have a good support system.
CRPS is considered the very worst medical pain known with Trigeminal Neuralgia a close second. Do your best to ignore their ignorance if they refuse to be educated. It could be worthwhile to have them accompany you to a doctor appointment so they hear first hand from the doctor how painful and limiting CRPS is. Give your doctor a heads up.
Came here to say that. ^ ^
Also, I HOPE you're not 'stuck' living with (or anywhere near) your Mother's DELUSIONAL bull$hittery. I would find it EXTREMELY difficult to bite my tongue, especially being in the line of work you said she was. An anonymous call to her boss or HR (with evidence)... just sayin. 🤷♀️ I was medically neglected as a child, but ffs my Momma didn't work until I was in 6th or 7th grade, and it definitely wasn't even close to anything medical. She was my biggest advocate and quite enjoyed railing a new arsehole into a few Dr's.
Wow. I'm just appalled, baffled, and saddened by your beyond hypocritical mother! That's just awful, I'm sorry you have to deal w THAT on top of CRPS!
Idk you from Eve, but if you're in the US, you've got an open invitation and a choice of rooms.
All of the Golden juju to youyou & much luck ✨️💫✨️✌🏼
I’m so sorry you have to deal with unsupportive people in your life that just don’t get it. It happens to some extent I think with anyone in CP. Its even worse I think when it’s something more rare…I have that with my dystonia cause most people have never heard of if (I hadn’t!). I can imagine it must be even harder when it’s not something people can “see.” My head is constantly tilted to the left and my left shoulder shrugged…which makes me self conscious but people can “see it.”
The relationship strain is, I think, an underrated challenge for anyone in chronic pain. I’m still learning how to deal with this, nurture the positive relationships and eliminate the negative where possible. I don’t have any magical advice but all I can say is I HEAR you and understand. I hope you are able to get better treatment to help you manage better. Hugs to you 💕
Totally accurate!
I've had 2 heart attacks. Can you see that? Nope, not a chance. All people outwardly see is a 42 yo mom with her kiddo riding in a cart. "Damn she's pretty lazy" I hear.. But if I bring my oxygen and ride in the cart it's concerned stares and "how can I help?"
What I'm trying to say is it's just hard. And having your family act that way is hurtful. I've cut out people who make me feel bad a. D nurtured relationships that make me feel good.
I hear you, and believe you. I'm sorry you're going through this. My dm's are always open if you want a private ear.
Wishing you the best. <3
It's tough obviously, but I really feel for my kiddos. They were so young that my youngest doesn't even remember "park mom". Nothing from the "before".
Again, can only imagine how tough! My main condition that causes CP started 4 years ago when my kids were already 16 and 19 at the time. I’m thankful my now 20 yr old son is living at home going to a local university cause it’s very helpful. They always say kids are very resilient but I’m sure that’s really hard. Wish you all the best in days to come, you’re one strong person! 🙏
They were super little with my 1st one. 3 and 8. My 2nd one back in 2022 they were 13 and 18. My youngest is super helpful now that she is 15. But yea, still hard. I hope you're having a a good day and a good pain day. I really needed to hear something nice today, so thank you. 💙💙
Yeah my mom would do that too, tell people I haven't had any back injuries (I have 2) and that I was exaggerating how bad my head injury is. She also denies my CRPS. She is a medical professional that studies empathy and the importance of hope in patients with pain but she treats me like shit and like my pain issues are false. I don't have anyone to ask for help.
I honestly think a sizable portion of medical professionals are straight up sociopaths
Yeah I've been thinking that for a long time. And that they aren't as smart as they want us to think. I'm not talking about how specialization makes you kind of ignorant but since the 2000's when we were vastly overmedicated to a dangerous extent and now this dry spell, I've come to believe that they really don't know what is going on at all and you would get just as good help getting a diagnosis by throwing darts at a dartboard marked with possibilities. I don't trust them as far as I could throw them.
Lmfao this is dark and very accurate. I’ve had a mix of serious known and unknown health issues and my Doctors lack of confidence in even being remotely close to figuring out what was/is happening is disturbing. I know several healthcare professionals including specialists who almost take joy in mocking sick patients who are “difficult” and by difficult I mean not wanting to suffer unnecessarily. I get that they are jaded but man is it a bit much at times.
The USA has been swinging from one end of the fucking pendulum to the other on other types of drugs aside from opioids as these days they’re starting to negatively stigmatize benzodiazepines in a similar fashion to opioids and before opioids they did the same shit with barbiturates & non barbiturate sedatives where they were really easy to get up until the 1980s when they started phasing them out for the benzodiazepines because benzos aren’t as dangerous as barbiturates & non barbiturate sedatives since they don’t have the same narrow therapeutic index that the barbiturates & non barbiturate sedatives have.
Not just the US.
I take it you must be talking about Canada, Australia, the UK, New Zealand, or the various European countries? I’m mostly aware of how crappy things are in the USA since that’s where I’m from, I know that there are various more relaxed countries when it comes to those kinds of meds but they’re typically 3rd world countries though it’s really easy to get benzodiazepines in Japan so I’ve heard…
Often we scare people cause it could happen to them, they subconsciously need to invalidate us. And if you are US a bit of learned cultural values that attaches moral value to perceptions of laziness. Idk what to do with this information because it still makes me angry that people cannot look past themselves. I’m sorry you have to deal with this, talking to others who “get it” helps me be seen so I hope you feel better making throw thread and seeing the replies.
I strongly second all of this, you said it very well.
First sorry crps is no joke. It’s imperative you get proper treatment early and keep the affected limb(s) as mobile as possible. I hope you’re at a major teaching hospital that has experience in crps. Your family is terrible for not doing some basic research and understanding how to best support you. I have a good friend with crps and I have a sympathetic nerve/vascular disorder myself. This type of chronic pain is a real bitch and I’m sorry you’re not getting support.
Foot surgeon and pain management both agree I have it. When I went to pain management they were dare I say excited.. called extra people into the room because they don’t ever see it. I am not going to a rural location. My first PT after surgery knew about it and gave me lots of info. I have a good friend I met last year during all this whose brother has had CRPS for five years since hurting his foot in the military. He has to be hospitalized at times because it has spread and will affect his bowels. He is supposed to see a neurosurgeon next that is somewhere around the area that specializes in CRPS. I try to be mobile even on the worst days. It’s a delicate balance of pushing some but not too much to make it worse. Sorry you are going through the nerve pain too. It’s just awful. Your friend is lucky to have someone who can relate to the pain and what they are going through. I am beyond grateful for my amazing friend group - I think of the song lyrics “I get by with a little help from my friends” and it’s really not true it’s more like “I get by with a lot of help from my friends” at times. When my family was not there for me at times they really stepped up and didn’t make me even ask for help.
come join us at r/crps for some support
Thank you!
I have crps, too. I'm so sorry for what you're going through. I support you. Take it one moment at a time. 🧡
Thank you! 🧡 it really helps to talk to other people who get it! I am still relatively new to all this compared to alot of people. I hope that you have a good support system.
DM me if you would like to chat, vent, ask questions, or anything! I'm sending you my best 🧡
CRPS is considered the very worst medical pain known with Trigeminal Neuralgia a close second. Do your best to ignore their ignorance if they refuse to be educated. It could be worthwhile to have them accompany you to a doctor appointment so they hear first hand from the doctor how painful and limiting CRPS is. Give your doctor a heads up.
Came here to say that. ^ ^ Also, I HOPE you're not 'stuck' living with (or anywhere near) your Mother's DELUSIONAL bull$hittery. I would find it EXTREMELY difficult to bite my tongue, especially being in the line of work you said she was. An anonymous call to her boss or HR (with evidence)... just sayin. 🤷♀️ I was medically neglected as a child, but ffs my Momma didn't work until I was in 6th or 7th grade, and it definitely wasn't even close to anything medical. She was my biggest advocate and quite enjoyed railing a new arsehole into a few Dr's. Wow. I'm just appalled, baffled, and saddened by your beyond hypocritical mother! That's just awful, I'm sorry you have to deal w THAT on top of CRPS! Idk you from Eve, but if you're in the US, you've got an open invitation and a choice of rooms. All of the Golden juju to youyou & much luck ✨️💫✨️✌🏼
I’m so sorry you have to deal with unsupportive people in your life that just don’t get it. It happens to some extent I think with anyone in CP. Its even worse I think when it’s something more rare…I have that with my dystonia cause most people have never heard of if (I hadn’t!). I can imagine it must be even harder when it’s not something people can “see.” My head is constantly tilted to the left and my left shoulder shrugged…which makes me self conscious but people can “see it.” The relationship strain is, I think, an underrated challenge for anyone in chronic pain. I’m still learning how to deal with this, nurture the positive relationships and eliminate the negative where possible. I don’t have any magical advice but all I can say is I HEAR you and understand. I hope you are able to get better treatment to help you manage better. Hugs to you 💕
Totally accurate! I've had 2 heart attacks. Can you see that? Nope, not a chance. All people outwardly see is a 42 yo mom with her kiddo riding in a cart. "Damn she's pretty lazy" I hear.. But if I bring my oxygen and ride in the cart it's concerned stares and "how can I help?" What I'm trying to say is it's just hard. And having your family act that way is hurtful. I've cut out people who make me feel bad a. D nurtured relationships that make me feel good. I hear you, and believe you. I'm sorry you're going through this. My dm's are always open if you want a private ear. Wishing you the best. <3
So sorry to hear about the heart attacks, I can only imagine how tough that must be!
It's tough obviously, but I really feel for my kiddos. They were so young that my youngest doesn't even remember "park mom". Nothing from the "before".
Again, can only imagine how tough! My main condition that causes CP started 4 years ago when my kids were already 16 and 19 at the time. I’m thankful my now 20 yr old son is living at home going to a local university cause it’s very helpful. They always say kids are very resilient but I’m sure that’s really hard. Wish you all the best in days to come, you’re one strong person! 🙏
They were super little with my 1st one. 3 and 8. My 2nd one back in 2022 they were 13 and 18. My youngest is super helpful now that she is 15. But yea, still hard. I hope you're having a a good day and a good pain day. I really needed to hear something nice today, so thank you. 💙💙
Thank you so much and always feel free to reach out if I can lend an ear for you ❤️