Have horrible chronic pain condition

[rabbithole]

I have a condition called arachnoiditis. It causes you to have intense nerve pain. I also have saddle anesthesia and incontinence. All because of a lumbar puncture performed incorrectly by a resident at Yale. I didn't even need the LP but I basically opted to have it done. Now my life is destroyed. And I love life dearly but cannot live this way. I suffer emotionally probably more than physically...although the physical suffering is insane. I just miss my old self.
Is anyone else dealing with chronic pain/disability?

 

[LonelyNick]

Me. Been struggling with gallbladder pain, hospital is refusing to help, I just want to die.

 

[whywere]

WOW....WOW!!!! YOU AND ME ARE TWINS!!!! I had gall bladder cancer in March, 2014, got cancer free, March 2015, THEN in April, 2015, driving South and a person was coming East and he blew through a stop sign and i t-boned him. He DID NOT get a scratch, and I wound up in ICU. From when I awoke in ICU till then end of my life, I have 24/7 chronic pain. It tore part of my spinal column out of the right side of my brain in the back of my head.My ENTIRE right side of my body aches and feels like I have 1 GIANT HEART BEATING. I am on a heavy does of opoids and still I get around 2 hours of sleep at 1 time. I am so SORRY for you my HEART BREAKS for you and I truly am crying typing this becasue I have a good idea what you are experiencing. PLEASE try and remember, as me as me, that you have a global family here that is full of love, caring, empathy and support. I do not know you personally, BUT as a family member , I love and care for you and want the best for you!!

 

[Aap]

I hear you and have nothing but compassion for your condition. The saddle anesthesia is terrible, especially to quality of life. I wish I had more than kind words to direct your way. You aren't alone.

 

[rabbithole]

WOW....WOW!!!! YOU AND ME ARE TWINS!!!! I had gall bladder cancer in March, 2014, got cancer free, March 2015, THEN in April, 2015, driving South and a person was coming East and he blew through a stop sign and i t-boned him. He DID NOT get a scratch, and I wound up in ICU. From when I awoke in ICU till then end of my life, I have 24/7 chronic pain. It tore part of my spinal column out of the right side of my brain in the back of my head.My ENTIRE right side of my body aches and feels like I have 1 GIANT HEART BEATING. I am on a heavy does of opoids and still I get around 2 hours of sleep at 1 time. I am so SORRY for you my HEART BREAKS for you and I truly am crying typing this becasue I have a good idea what you are experiencing. PLEASE try and remember, as me as me, that you have a global family here that is full of love, caring, empathy and support. I do not know you personally, BUT as a family member , I love and care for you and want the best for you!!

Wow. I am so sorry that you have endured so much. It is more than any one person should have to handle. I hope and pray you have good support in your life. I want the best for you as well. I don't know if this post was directed at Nick but nonetheless, I hope today at least is a low pain day for you. No idea why some people suffer so much and others just suffer through normal life troubles...bills, family deaths, normal stuff. I could handle that stuff if I had my health.

 

[TheGoodGuy]

Although I am not in physical pain I have an undiagnosed throat condition that the doctors can´t figure out what is so this disability has ruined my life since it takes me so long to eat just as an example it takes me 20 minutes to eat a cheeseburger from Mc Donalds so over the years I have excluded myself from my going out with my friends and do stuff because in the course of a day we would have to eat at some point and they would have to wait 20-30 minutes for me to finish eating. I know this condition doesn´t seem bad to the ear but trust me it is I also can´t work or even go to school since we only have a 20 minute launch break and it takes me 15 minutes just to eat a piece of bread.

 

[whywere]

Wow. I am so sorry that you have endured so much. It is more than any one person should have to handle. I hope and pray you have good support in your life. I want the best for you as well. I don't know if this post was directed at Nick but nonetheless, I hope today at least is a low pain day for you. No idea why some people suffer so much and others just suffer through normal life troubles...bills, family deaths, normal stuff. I could handle that stuff if I had my health.

THis was for you and also @LonelyNick , as far as my heart breaks for both of you. WE are a trifacta, and this is a PERFECT example of our family here and how it works, beautiful!!!!! I TOTALLY agree with you as fr as if I had my health, normal things are not much to hnadle. I ALWAYS get so mad, when someone talks with me adn I tell them about chronic pain and I get a response like: "oh it is just like a headache!" Bull crap to that! I also shake my head at greedy people and money is everything, and they are in perfect health and do NOT even want to try and understand. Again, @rabbithole and @LonelyNick , my heart goes out to you and we are all one and a family and we look out for each other!! Love,caring and emapthy to you folks!!

 

[rabbithole]

I hear you and have nothing but compassion for your condition. The saddle anesthesia is terrible, especially to quality of life. I wish I had more than kind words to direct your way. You aren't alone.

Thank you for your comment. The saddle anesthesia is so damn uncomfortable, on top of being just awful because I have no sexual function.

 

[whywere]

NOW @rabbithole , I have to say, WELCOME to Sanctioned Suicide!!!. WE LOVE having you here and I hope, like I have, that you find all the love, caring,empathy and support that we have to offer to help you! I am so proud to be able to call you a global family member!!!! You are from your post to me, such a caring and loving person, that you helped make my Tuesday, 10.27.20, so much better! I THANK YOU for that. AGAIN WELCOME and great to have you here our new global family member!!!!!!

 

[rabbithole]

NOW @rabbithole , I have to say, WELCOME to Sanctioned Suicide!!!. WE LOVE having you here and I hope, like I have, that you find all the love, caring,empathy and support that we have to offer to help you! I am so proud to be able to call you a global family member!!!! You are from your post to me, such a caring and loving person, that you helped make my Tuesday, 10.27.20, so much better! I THANK YOU for that. AGAIN WELCOME and great to have you here our new global family member!!!!!!

Thank you so much for such a warm welcome whywere. I am so glad I made your Tuesday better...you certainly made mine better as well. My thoughts have been consuming me alive and are all very dark, so any reprieve from them is such a gift.
Wow

Although I am not in physical pain I have an undiagnosed throat condition that the doctors can´t figure out what is so this disability has ruined my life since it takes me so long to eat just as an example it takes me 20 minutes to eat a cheeseburger from Mc Donalds so over the years I have excluded myself from my going out with my friends and do stuff because in the course of a day we would have to eat at some point and they would have to wait 20-30 minutes for me to finish eating. I know this condition doesn´t seem bad to the ear but trust me it is I also can´t work or even go to school since we only have a 20 minute launch break and it takes me 15 minutes just to eat a piece of bread.

wow I am so sorrry. That sounds awful. What grade are you in? If you don't mind me asking.

 

[NextSummer]

I've seen several with severe chronic pain problems on this forum, but there aren't many who stay on this forum for long.

Did you sue the guy from Yale who turned your life into this?

 

[rabbithole]

I've seen several with severe chronic pain problems on this forum, but there aren't many who stay on this forum for long.

Did you sue the guy from Yale who turned your life into this?

Currently trying to sue. It was a woman who had only done the procedure once before. She stabbed me 6 times and wrote on the report that it was once.

 

[TheGoodGuy]

Thank you so much for such a warm welcome whywere. I am so glad I made your Tuesday better...you certainly made mine better as well. My thoughts have been consuming me alive and are all very dark, so any reprieve from them is such a gift.
Wow

wow I am so sorrry. That sounds awful. What grade are you in? If you don't mind me asking.

It is horrible I can´t do anything in life anymore that involves other people because eventually we have to eat, I remember several years ago to my last LAN party with some friends we were gaming and the 6 of us decided to go to Mc Donalds but I didn´t order anything despite being very hungry because I knew they would have to wait a long time for me to finish luckily one of my other friends weren´t hungry so he didn´t order either, the extra sad thing is that when we came back to my apartment I ate some oats with water because I could eat that a little faster if I let it sit for a while, so imagine smelling and seeing the food in the Mc Donalds to come home and eat oatmeal with water on since (I became intolerant to milk as an adult).

I am done with grade school the school I was in I don´t how to explain it but you need to pass it to be able to attend college.

 

[Jumper]

I have a condition called arachnoiditis. It causes you to have intense nerve pain. I also have saddle anesthesia and incontinence. All because of a lumbar puncture performed incorrectly by a resident at Yale. I didn't even need the LP but I basically opted to have it done. Now my life is destroyed. And I love life dearly but cannot live this way. I suffer emotionally probably more than physically...although the physical suffering is insane. I just miss my old self.
Is anyone else dealing with chronic pain/disability?

Oh God. I'm so sorry this happened to you. This sounds awful... especially given the iatrogenesis from an unneeded procedure. What was the indication for the LP? Was anyone supervising her?

I have a terrible progressive pain disease called CRPS/RSD. Onset 2018 after a trivial injury and it now involves both legs. Prior to this, in 2016, I had an unnecessary procedure that lead to a life changing complication, but it was manageable. But it indirectly lead to the 2018 injury that triggered CRPS. I also have bipolar 1.

Every moment is torture.

 

[woxihuanni]

Yes, sue the fuck out of her. She deserves to have a puncture just like the one she gave.

 

[yetme]

Yeah, I can totally relate.
In my case painkillers don't help at all. Ive tried them all, even heroin.
All our medicine is just a joke. We put people on the moon, but don't know shit about medicine. Life is good if you're healthy, but as soon as you get ill, you are fucked. And everyone will get ill at some point. Life is merciless

 

[rabbithole]

Oh God. I'm so sorry this happened to you. This sounds awful... especially given the iatrogenesis from an unneeded procedure. What was the indication for the LP? Was anyone supervising her?

I have a terrible progressive pain disease called CRPS/RSD. Onset 2018 after a trivial injury and it now involves both legs. Prior to this, in 2016, I had an unnecessary procedure that lead to a life changing complication, but it was manageable. But it indirectly lead to the 2018 injury that triggered CRPS. I also have bipolar 1.

Every moment is torture.

My gp sent me to the ER to have it done because I was having a migraine for a month straight, slurred speech and my tongue kept tingling. I guess she thought it was autoimmune. The worst thing is that the attending that night said she would sleep fine if I didn't have it done but I opted for it knowing nothing of the seriousness of the procedure. I was never told the resident had only done one before and in fact they convinced me that the ER was the best place to have it done.
I'm so sorry you have CRPS. I know about that disease and it is awful. I know it's at the top of the McGill pain scale as the most painful disease. Arachnoiditis is probably right below it. I'm really truly sorry this happened to you. I've heard of some helpful treatments for CRPS...I think one is called scrambler therapy? Do you have good support in your life? I know sometimes it doesn't matter. I just miss myself and my life so damn much.

Yes, sue the fuck out of her. She deserves to have a puncture just like the one she gave.

I'm sure she didn't mean to fuck it up so badly but i do think she knew how incompetent she was and should've said she couldn't do it properly and let the attending do it. I don't know.

 

[Hyperbunny]

I have a condition called arachnoiditis. It causes you to have intense nerve pain. I also have saddle anesthesia and incontinence. All because of a lumbar puncture performed incorrectly by a resident at Yale. I didn't even need the LP but I basically opted to have it done. Now my life is destroyed. And I love life dearly but cannot live this way. I suffer emotionally probably more than physically...although the physical suffering is insane. I just miss my old self.
Is anyone else dealing with chronic pain/disability?

yess
thie chronic pain is th reason i wanna ctb! pain sucks fmls

 

[flower]

I have chronic pain but nowhere near that extent, I'm so sorry, it sounds unbearable. I really hope you get some sort of justice for what happened to you

 

[rvsw]

NOW @rabbithole , I have to say, WELCOME to Sanctioned Suicide!!!. WE LOVE having you here and I hope, like I have, that you find all the love, caring,empathy and support that we have to offer to help you! I am so proud to be able to call you a global family member!!!! You are from your post to me, such a caring and loving person, that you helped make my Tuesday, 10.27.20, so much better! I THANK YOU for that. AGAIN WELCOME and great to have you here our new global family member!!!!!!

Welcome sharing same problem

 

[AintNoWayOut]

same boat here buddy. im no longer the person i used to be, the pain has taken over and managed to control me and my life for the past six years.. physical therapy hasnt worked, medicine hasnt worked, NOTHING has been able to give me any relief. the fact that technology is so advanced, yet we cant fix something as simple as back and neck pain is astounding to me. i have one more trick up my sleeve, and if that doesnt work im surrendering completely. this bullshit stole my life from me... i just wanna go back to how things were. and even IF by some miracle, the pain eased up, i've missed out on so much of life because of it. years which could have been spent going out with friends and experiencing life were spent being depressed in my room.

just know that you dont deserve to be in this situation, really none of us do. its just an incredibly cruel part of life which, sadly, we're unlucky enough to go through. its one of the most hellish and dehumanizing things someone can experience imo.

 

[rvsw]

I am wondering if the chronic pain patients have tried pain pump or neurostimulator and if it has helped anyone thank you for any input

 

[Hyperbunny]

I am wondering if the chronic pain patients have tried pain pump or neurostimulator and if it has helped anyone thank you for any input

I have heard these work for difficult cases, but not sure if every country offers it to all patients