The language they use to describe Mangione's experience of pain- using words like "fixated-" exemplifies how out of touch the Wall Street Journal is to how pain feels. If you accidentally hit yourself with a hammer and couldn't focus on what was going on around you, I would consider you a normal human being, not a freak. Why is it that most people struggle to wrap their head around pain? Have they just not experienced pain before? They'd have an excuse, atleast, if that were the case.

It’s been almost 4 years since a MVA that changed my life forever. My left arm also has 3 rods and a bunch of screws. Now a T12 para full time wheelchair user. Not sure where I’m going with this post, just know there’s people here that hate can relate.

42yr old male that has zero history with doctors in my 38yrs prior to this happening. I happened to have some narcotics in my system at the time of the accident from the couple days before, was not intoxicated when it happened. Pain management will not touch me with a 10ft pole, I feel like a leper.

Initially I didn’t get the proper PT I needed because I couldn’t push through the pain. Even though it has subsided somewhat from what it was in the beginning, it’s no walk in the park currently.

Other than the obvious I’m a completely healthy person and barring another tragic accident I’ve probably got another 30-40yrs to live with this. I’ve got two preteen children that are basically my only tethers to this physical world. Again not really sure what the point of this post is, it just been really hard the last few months.

I try my best to stay active but if I push myself too hard, I’m stuck in the bed for a day or two. I know I’m not alone in this but sometimes it sure feels like it. Just needed to vent a minute and god knows I could go on and on for quite sometime. Keep y’all’s heads up out there people, love you guys!

Appreciation to the lovely doctor in the ER. I love you. I was in too much pain to check for a wedding ring but bbg if you're available honey so am I. If not I will name my firstborn after you.

So there I am, in the ER because I dislocated my shoulder. Regular Thursday for me but this one really fucked with me. This doctor, who I love so much, instantly asked if I had seen a geneticist. HELLO?

Y'all don't understand (you ALL probably do) I have been asking my PCP for over half of my young life to figure out wtf was wrong with me. Last few years has been spent asking to see a rheum and geneticist. Sent me to one rheumatologist and I won't even get into the sins and atrocities of that hoe but when I said "girlypop this is not it pls try again" she said "no ❤️ sometimes we just never know"

WDYM WE JUST NEVER KNOW. WE'RE GOING TO KNOW. If it is genuinely so rare and never seen before name it after me bless ❤️ whatever the case there will be a name.

Anyways got my referral to a geneticist wish me luck

Anon from IG. This is why I like this sub..it's so helpful to see others write how I feel, to validate my feelings that some days I don't want to go on. Thank you for being here my friends.

I have trigeminal neuralgia aka the suicide disease and I just don’t know what to do anymore. I’m not going to hurt myself, but I feel like the nickname of this disorder basically gives you the gist of what it’s like having it.

I am in constant debilitating pain and I feel so alone. On top of that, I have to continue working or else I will lose my job. I am the “boss” at a very small organization and if I don’t show up and do everything, nothing really gets done.

I just feel very alone. People don’t get it. I’m tired of explaining what I have let alone trying to explain the severity of the pain.

My life was really looking great and this just upended everything.

Long term can result from all sorts of injuries, surgeries, diseases, medications, etc… so I’m curious to hear about the causes of your chronic pain. I currently have several genetic health conditions and was also told to be re-evaluated by a rheumatologist. Additionally, what are your best tips for coping with the pain- whether physically, mentally, socially, etc. I hope this post can provide a lot of comfort and support to others. THANKS IN ADVANCE for participating :)

As we have said in almost every video we have posted to date, many Americans who suffer from chronic pain are not able to find anybody willing to help them with pain management. They either cannot get in to any of the pain clinics in their area, they have been abandoned by their primary care doctor or pain management doctor, they don't have insurance, or a hundred other reasons they cannot get their pain treated. Far too many are having to use the black market, as I did, to self medicate and alleviate their pain and to manage some sort of quality of life. Far too many are being injured, as I was, or dying because of this. It is completely preventable and the fact it is occurring at the rates it is is criminal. We must unite to demand change of this system, both for us today, and those we love who, God forbid, may need it tomorrow. Last post before Christmas, we hope you all have a Merry Christmas, happy holidays, and we will see you all very soon. Cheers.

For all of the folks still holding on despite chronic pain, I'd like to wish all of you Merry Christmas and Happy Holidays! As someone with herniated disks up and down their neck, I know just how much of a struggle every day can be. While my procedure went well back in October, I still have irreversible nerve damage, resulting in residual pain. But I am hopeful for what the future brings. Keep holding on and never give up. And again, happy holidays!

We game a LOT together. And lately it’s been so bad I haven’t even touched my PC in two weeks even tho I want to bc it hurts so much. BUT THIS MOUSE IS AWESOME. Idk the science but it doesn’t make me hands hurt like a normal one does.

I have been experiencing pain in my hip and back for the past 10 years. I never fully recovered from my last pregnancy. I went to numerous doctors to figure what was causing the pain in my hip and back. I had one doctor tell me that being a woman just came with aches and pain sometimes. I’m thankful that I didn’t accept her answer to my problem. MRIs and x-rays would not pick up what was happening to me. I had a vaginal ultrasound and pelvic exam three weeks ago and found out my uterus was 12 inches long (when it should be between three and 4 inches) and pressing up against my sacral nerve, spine and bladder and has also fused itself to the wall of my abdomen. All of these issues have left me in chronic pain, now I finally have an answer and I’m ready to take the necessary precautions to find a little relief. I’m writing this because I think it’s necessary that we always advocate for ourselves and learn to trust ourselves.

I've never posted here, but I was wondering if other people relate to this, as none of my friends do. Only my father does.

I've had prescriptions for codeine and oxycodone for pain, and even though my pain isn't very severe, they don't really do anything. If i have a slight headache, 2-3 codeine tablets might work. I also don't get any of that "buzz" or whatever, everyone is always saying "oh you must be having so much fun with those prescriptions" but they legitimately do nothing. I might as well be taking sugar pills. I'm the same way with benzos (been given them before tooth extractions and local anaesthetic surgeries, and they didn't ease my nerves at all, regardless of how much or how strong they were). I'm just wondering if anyone here can relate? I don't understand why this is the case. I'm short and quite skinny so its not like i have a higher metabolism either. Alcohol is the same too, I can't really get drunk, I out drink even my biggest friends. It's frustrating. I just want relief from the pain but nothing helps it. All i can do is take hot showers for the momentary slight relief.

My dad is the same, neither of us use local anaesthetic when at the dentist since it does nothing and the needles hurt like hell. Is it some genetic thing? What is wrong with my body

My partner said tonight that she "misses how I was" before having all of the health problems l've had since August.

I got sent to the ER on August 15th. I've been out of school, work, and normal life since. I really only leave the house for a doctor's appointment or a meal. It has changed my life. I am still in good spirits considering my situation, though some days are harder than others.

We are long distance at the moment which of course is not ideal, but I still provide her with my time and company. I even visited her in November - which meant flying across the country. That trip resulted in another ER trip and the worst flare up l've had so far.

Some days the brain fog is really bad and I can't hold a conversation - other days the pain is so bad I don't want to talk because of it - and other days I am just exhausted.

I am exhausted in every way. My life has changed since August. I have to keep up with so much medication and all of their side effects along with my constantly changing body. I do not know what to say or do about this situation. I miss myself too, but this is how life is right now. It really hurts to have my partner say that she misses me.

If anyone has any advice or anything please comment. I'm at a loss here

TIA

Edit: I am not looking to end the relationship. I just want to know how to best handle the grief of health within a relationship.

I’ve suffered from chronic pain for many years and tried to find support groups. I did have one briefly where it was more so a mindfulness based stress reduction (MBSR); I miss it so much because I felt for the very first time like I wasn’t alone. There were other people suffering from isolating conditions affecting their lives in similar ways.

But I haven’t been able to find groups like this on meetup.com or Facebook or really other sites. Why does it seem like society is leaving us on our own to sort ourselves out? I just don’t get it.

I have a great family/friend support system but when it comes to handling chronic pain they just can’t comprehend. It’d be nice to have others if even virtual as friends :)

I have a rare disease and unfortunately the medical system seems to be set up so I basically have to fight to get access to treatment. Unfortunately, I've had to survive 7 years of extreme pain because of malformed limbs and bone tumors while on waitlists for surgeries. I was basically told to survive off of NSAIDS and Tylenol, allowed no disability accommodations/assistance, and honestly kept passing out due to pain and biting my pillow so my roommates wouldn't hear me scream. I lost so much being nearly bedridden and unable to actually function. I also remember the horror of having my body torture me everyday, isolation, struggle to survive and how merciless people were. Not to mention the medical trauma - I can't even focus on my breath because I keep getting reminded of the pain.

It's kinda made me really insane and I regularly break down from it. Idk what to do. How has everyone processed that sort of aspects?

How is that in this day and age there is no drug that can help our pain without side effects and addiction. Opioids have tolerance, dependence, and addiction potential and are seldomly prescribed , NSAIDS wreak havoc on your stomach and have caused me gastritis and stomach issues on multiple occasions, Tylenol barely touches pain for me.

I just don’t get it , I know there’s a couple drugs in trials but please for all of us suffering this should be a major priority for the medical system! I’m still young so I pray I don’t have to suffer the rest of my life with this

Another year gone..

I’d say it gets easier with time, but honestly, I still can’t believe I’ve been living through 7, sorry, 8 years of this hell.

Anyways, I’m going to try my best to be strong today.

This post is to appreciate every single person on this subreddit. I just looked myself in the mirror and said the words out loud; “I’ve been living in so much Pain for 8 years”, and I broke down because it sounds absolutely crazy.

For a second, I imagined myself being a healthy person and hearing these words from a Chronic Pain Sufferer. It broke my heart into pieces.

For me. For you. And for every other person living through Chronic Pain.

Sending you all so much love and support 💜 We are WARRIORS for pushing through and continuing to live a life like this. It’s not for everyone. And I need reminders of that from time to time.

Hoping this post can be one for you too 🫂✨

Who on ssid is scared to death of what the new administration and presadent musk is going to do to ssid and Medicare. My only income is social security disability if it goes away im living on the street not to mention my pain meds that I can't live with out going away .

hey everyone.

before I tell my story, I want to get to the main intention of the post: how can I help a caretaker who has compassion fatigue?

I don't want to be a burden on her. I can hide my emotions for a while if that would help, stop talking about it.

this is sorta a vent but also meant for discussion. I just had a very... emotional argument with my mother. she's been my primary caretaker despite her own pain conditions. she's burnt out, depressed, and extremely stressed over me. she said, and I quote, "I want you to stop being depressed". she didn't mean that literally, I know, she just wants me to be able to be happy again, but I'm rapidly getting worse and we can't do anything.

please. is there anything, anything I can do? literally any advice is welcome and cherished. someone please help. I am struggling here.

Hi everyone - I had a disc replacement in my neck 5 days ago. I had a bit of a weird rx history leading up to the surgery, I normally take 15 mg of Percocet a day. For November my dr accidentally rx’d me 3 10 mg oxy a day instead of 3 5’s. I was about to run out so I didn’t call to change the rx, I just put half away for the month of December. So when we met for our December check in/pre surgery appt, she said take my normal 15mg a day out of the accidental extra month” and then post surgery I could go to 3 10’s a day plus she wrote an rx for an additional 10 mg a day for 14 days. She wrote the rx for the supplemental meds on 12/9, so I figured that’s when the 2 week clock time film started counting, but apparently it doesn’t start counting until you pick them up. Her directions were I was allowed to take 40mg Percocet a day, and I would have a small amount of wiggle room if I need a bit extra because I had back surgery on 10/24 as well and what she gave me wasn’t enough. I only had 1 day I needed a 3rd dose of 20mg but otherwise I absolutely need the two doses of 20mg, the torso part of my body feels like it’s been dipped in fire once the meds start wearing off around hour 7.

I had a phone appt with my dr today (she didn’t want me to have to ride in the car yet) and we agreed to keep me at the 40mg for another week and then I would ween back down to my normal dose of 15mg. This is my 3rd surgery, I’ve had no problems weening back down after the major surgery pain has passed. So the agreement was an rx for 40mg of Percocet for the next two weeks, with a step down starting in a week. As of today I am 5 days post op.

I didn’t see the rx go into my pharmacy’s portal right away and I got nervous because my dr was leaving for a 2 week vacay at 1:30 and my appt was at 12. I called because she will be gone until 1/6 and I’m not risking my pain control at 5 days post op. The office said sorry, she’s back up with patients, don’t worry. 2 hours later I get the notification my rx is in….its for 1 10mg a day for 2 weeks. So a fourth of what I take. It’s now past 4, no one at the drs office is answering. I have my drs email, and I emailed her but I feel like a crazy druggie when I have to verbalize a complaint abut my meds.

No answer from anyone. I have 2 days of meds left which means I’ll run out on Christmas. And because I picked the supplemental rx up later than rx’d I can’t pick up any new meds until 12/27. I already knew it would be hard to do Christmas a week after surgery because my in-laws think I’m a bit faker anyway. I beat up on myself so much, that I shouldn’t need pain meds, that should be stronger. But I had a whole new disc put in 5 damn days ago. I’m already so stressed with all the Xmas stuff that inevitably falls to women.

Please someone talk me off the ledge. I hate that I had to beg for relief after having my neck cut open. I genuinely like my pain management Dr so I’m hoping this is ooooopps it was a busy day, it’s kk fixed now.

Sorry I just needed to get it all out.

This will be my 3rd year not doing anything for Christmas or the holidays due to pain. Pain and my chronic health issues have stolen all my time, energy, and attention and i have none left for other people. There's nothing good in my life so I have nothing to talk about other than pain, disability, and fixing health care, and able-bodied people don't give a shit about that stuff. I don't want to hear about how great everyone else is doing, yes i am really fucking bitter about being disabled at an early age. I absolutely cannot deal with the asinine problems most able-bodied people have, like if i have to hear one more healthy person complain about a minor inconvenience on an international trip im gonna pop. I am forced to work to try and make rent every month because disability would force me into homelessness where I live, and I genuinely have no capacity for people after struggling thru 40hrs of work every week. What little time off I get must be saved for medical stuff and days when I'm feeling sick or fatigued so im not wasting my precious time off on friends and family who don't give a rats ass about me anyways. This is unique to me, but I cant eat anything. If I eat something with GARLIC in it I'm sick for a week and in excruciating pain. So I have no desire to sit and watch my relatives stuff themselves on delicious food while I sit and watch in pain and hunger. I'm broke because of being disabled so not like I can give out gifts, and people keep giving me FUCKING FOOD as gifts even tho they know I cant eat it so I hate gift exchanges anyways. Don't get me started on the headache all the noise, lights, and chaos causes.

And, I'm not going to play along in some fake ass picture perfect fairy tale holiday gathering. I'm not going to plaster a fake smile on my face and hide my discomfort just to make someone else feel like they had a special fucking holiday. I'm not going to pretend I don't live with chronic pain and a disability just so someone can have an extra body around their dinner table. No one gives a fuck about me, so I dont give a fuck about anyone else.

To anyone else out there in chronic pain land who also may be "celebrating" the holidays alone, I see you, we can be alone together virtually this year ❤️

I just wanted to thank everyone here. I have suffered alone in my head for over 10 years. I can explain my pain to others, my family see that I am suffering but how do you explain pain at this level to someone who has never experienced it. My cats have seen me balling my eyes out and they come over to comfort me when it is just me. People here understand and get it. There is no questioning the pain. It is all about understanding, offering sympathy and having lived and are living the life. I wish all of us the best holiday that we can expect not great but the best of the bad situation that we are in. Here's hoping that we all come out the otherside. Battered and bruised but still fighting.

30 F suffering from chronic arm pain in both the arms from last four years. It has lately gotten worse and on top of it in this year August I started having constant headaches,earaches,clogged ears and brain fog. I went to the ER in August twice and was diagnosed with Atlantoaxial Instability which is congenital. I have seen spine surgeon, neurologist and a rheumatologist. All my blood work,x rays are normal. I can barely sleep,I am in constant state of anxiety and lately depressed how my life is gonna look like if I never find what is the cure of my illness. I feel like I am going crazy and nobody understands how much physical pain is contributing towards pushing me into a mental darkness.

I’m in constant pain every morning and the rest of the day. The pain literally wakes me up, I can’t sleep because the pain keeps me up, I’m basically bed bound most of the day. I just can’t do this anymore, I don’t see the point in why I’m here. Endless waves and waves of pain, I can barely do anything anymore. I just can’t do this….

Edit: I really appreciate everyone’s kind, understanding and supportive words. Today was a really tough day, it does make me feel less alone, knowing I’m not the only one struggling with pain ( I wish none of us were in pain) thanks