Edit to add: I mean for chronic pain patients, not that it’s a free for all for EVERYONE.

You’re a chronic pain patient. Your PCP/family doctor is okay with giving you as high a dose you need, to get rid of your pain. The pharmacy is cool with it too. There is no picky contract, testing, or pill counts. They trust you to be a responsible adult. You wake up, take a dose of WHATEVER works for you, and you now have zero pain. ZERO. You also have enough doses as you need for a day, plus some extra for flare days.

How different would your life be? Hopefully, if we keep toughing it out, we may get to live to see a world like this.

I find it hard not to think back and feel bitter about what I've lost. Coming to terms with the fact that this is permanent and I can't get my old like back. Feeling guilty about feeling resentful and jealous of people who have mobility and no pain. Feeling frustrated that medical professionals are drawing blanks and have given up trying to help. Any tips on how to deal with this? Or just solidarity. Thanks folks

To exhausted to explain but in short, jump through hoops and all I've gotten is more pain from it and denials.

My health has only gone for the worst since finally getting Healthcare... It should be improving, I should be getting somewhere.

I shouldn't have to jump through hoops over and over again for basic freaking Healthcare. Especially ones I've already went through.

This is not how Healthcare should be.

Internal bleeding and pain but no, I can't have an MRI covered unless I go through physical therapy AGAIN when I just did it less than a year ago.

( Too much to put here but I need this vent. )

Might add more but I'm tired boss.

I was recently diagnosed with a chronic spine injury and now I’m dealing with a fair amount of pain and exhaustion.

Anyway, I have a partner I really love, and they say they really love me, but he’s really lacking in empathy when I’m in pain and acts like he resents me.

He gets all quiet, moody, and distant. He never asks me how I am or if he can help in any way. If I make a moan or whimper, even the quietest one, he gets even more quiet and keeps himself distracted.

Just yesterday I was reaching into my closet and I felt my back go out and I just knew it was gonna be a bad bad day. All I said to him was “wow that hurt, I don’t think I can go to the gym today.” And what did he say? “You’re going to work right?”

That’s all he cared about, that I go to work. It’s like he is afraid that I’ll get fired and I know it’s because he thinks I’m faking. I remember he saw me making the bed when I was off work one day due to pain and he made a comment like “you can’t be in that much pain because you can make the bed”. I get pain from sustained positions like desk work, chopping/cooking, cleaning/bending over scrubbing, sitting too long, etc. And it’s movement that makes me feel better. Exercise. Yoga. Walking (sometimes). Just movement. But he has this old school idea that back pain means laid up in bed.

Anyway his comment about going to work really hurt my feelings and I haven’t stopped thinking about it.

When I think about it he’s always been this way. Whenever I have a cold or flu, he gets really grumpy and accuses me to of being in a bad mood. I tell him I’m not in a bad mood, I’m just sick, there’s a difference.

Anyway, I guess I could deal with his shitty attitude when it was a cold here and there. But now with a chronic back issue, and us both getting older, I’m wondering if it’s worth it to stay in this relationship. Like what if I get cancer and have to go on chemo, am I gonna get the same behaviour? What about for better or for worse? I feel like he only wants the former.

Anyway, I guess this was mainly a rant. But I would appreciate any suggestions on how to talk to him about all this. I’ve tried in the past but it’s obvious he just doesn’t get it. I need a new approach. Any tips?

And yeah I suspect I’ll get a ton of you should just leave him. We’ve been together 20 years so it’s not that simple. And I really love him. But know that I have been considering it lately.

I’m not really ready to talk on here much, but I had to share :
So, the newest thing I have started to say to All the doctors, nurses, PT and mental health care, when they ask about my pain or mental health the answer is

“ can’t I seriously just be a house cat “

Cats get help fast, pain care is available to them, someone is there to bathe them & cut their nails, clean litter and hand them food and treats.

When a cat lays in bed it’s “ normal “ , “ sensitive “ to food no problem, there’s no one judging you for just hiding the day away, no questionnaire to fill out, no appointments to navigate and everyone loves you just as you are.

Ahhh the life of a cat 🐱🍀🌈

Since I love seeing the smiles through the pain, I thought I’d share one as well. Today sucks but I’m making it. Here’s one with a smile and one that’s actually where I’m at with it today. I guess we sometimes can force a smile for others even when we’re having high pain days. The thing is i know I’m not aware that I have RBF when I’m tired and/or in pain. It takes effort on my part to look happy even if mentally I think I’m content. Thanks for the inspiration to make the effort to try and look nice for others!

The amount of pain I go through.. back pain.. legs.. even my ribs at times. No help from doctors because they all think you’re drug seeking and now addicted to kratom for the past 2 years… not sure what I’m going to do once the ban is complete 😭 it’s the only thing that’s helped me.. until withdrawal sets in and I’m in more pain than I can say. What can help me deal with it? Anyone? 😭 feeling so hopeless

i feel like at this point the pain itself isn’t even the biggest problem it’s the fatigue, the heaviness, feeling uncomfortable all over my body, and the ache deep inside my bones that just gets worse the more i push through

i need a break but i can’t get one i have appointments every day, i have to take care of my mum, or she just bothers me so much that i’m stuck in fight or flight constantly and never get to rest, i used to be able to do some things be able to keep going but that doesn’t work when it’s every day. i used to fast before leaving the house because eating makes me so sick and tired and my symptoms get so much worse, i used to wake up at a good time for me and try not to do anything too early but now i’ve got so many appointments early and no matter what i do waking up early causes a flare up or ruins my day, and i used to take breaks constantly and wouldn’t do anything that i didn’t have to, and rest for about three days before doing anything, but now i’m struggling to take breaks in the morning because it takes so long for me to even be able to move that by the time i can i’m rushing to get ready, and my mums unable and unwilling to look after me anymore so i have to do things for myself and for her that i struggle so hard to do, and i don’t get a single rest day anymore

and the worst part is i can even take it day by day because if i do even slightly too much one day i’m out of order for the next three to five days and have to push through even harder which can cause the worst flare ups i’ve ever had in my life

i feel like the more i push the the more my body forgets how to function and my brain just stops working, i can’t remember anything, i can’t remember how to speak, i get so confused, and i get stuck all the time it feels like my brain is drowning and i look insane because i’ll have no idea what people are talking about or talk gibberish or stutter and can’t think of what to say

i just don’t know what to do i can’t do this anymore but i can’t think of what i can do to help because atp even something as simple as my cat sitting next to me or my mum walking near my room makes me unable to function it’s like i freeze up and get so irritated and my brain and body malfunction, and i’m having to do things while feeling like i’m under water and held down by a weight my body doesn’t move it feels like i’m walking into a wall and like my arms are made of concrete

I have a really severe case of Classical-like Ehlers-Danlos Syndrome type 1, and deal with excruciating bone, muscle, and neuropathy on my skin and often other places

I also have a family history of addiction, a kinda moderate phobia of vomiting, inability to burp and vomit and a gj tube id rather not dislodge while puking

I just wanted to see if anyone has some indica dominant strain recommendation, I can sometime handle 50/50

Forgot to mention sativa makes me genuinely so anxious and paranoid, and I am an experienced stoner ive been smoking for 5 or 6 years now so high potency strains I can handle

I also have some recommendations of my own

How do I explain to my mom that my chronic illness and pain that overtook me at 24, will last forever, I will be disabled forever, even though I wasn’t born with it.

I can do things to slowly improve but only to an extent. Yes I do have to stay on medication my whole life unless some new medical intervention in the far future.

Video suggests or something! No books.

I literally told her, “Mom, I was not born with pink hair but I have it now. Thats how my illnesses worked too.

unnecessary context, feel free to skip
When I was 18 I perscribed 10mg cyclobenzaprine and took it for the first time before an appointment I was being driven too (dumb choice ik, I wasnt told it would make me so tired but I shouldve looked it up)
I fell asleep and ended up having to cancel my appointment due to the effects, obviously the person was upset but we didnt really talk about it.
She had an appointment at a near by mall and when we got there she made me get out of the car and go with her.
I was clearly intoxicated and was stumbling and ended up falling on her after the appointment (I wasnt with her during it, just waiting outside the business); she got really upset and raised her voice at me, saying I was high, that I "needed to stop", and that she "cant take me anywhere".
So she took me back to the car, still shouting at me, and we had an arguement.

I was wondering how to settle down my anxiety about taking it again? I dont have any other pain killers at the moment.

Hi everyone,
I (39F) have been living with some form of chronic pain for as long as I can remember, and I’m wondering if anyone else can relate.
In elementary school, it was debilitating migraines that kept me home from school. Once I hit puberty, it became migraines plus severe menstrual pain. At 16, I started experiencing unexplained abdominal pain that eventually led to having both my appendix and gallbladder removed.
In 2015, I was diagnosed with endometriosis. Since then, I’ve had multiple excision surgeries and eventually a total hysterectomy due to endometriosis and PCOS.
In 2017, I was officially diagnosed with fibromyalgia. Unfortunately, I’ve failed every medication I’ve tried for it. The one treatment that has helped the most has been lidocaine infusions, and after finally getting cardiac clearance, I’m scheduled to restart them tomorrow. I’m really hoping they provide some relief.
Lately, though, I’ve been struggling with something beyond just the physical pain. Living with pain day after day is exhausting, especially when a flare lasts well beyond a week.
I’d really love to hear from others who understand.
How have you found purpose or meaning while living with chronic pain?
What helps you cope mentally and emotionally during bad flare days?
What do you do when a flare just won’t let up?
How do you keep yourself from feeling discouraged or hopeless during long stretches of pain?
Have you found any non-medication strategies that genuinely make a difference?
If you’ve been dealing with chronic pain for years, what do you wish someone had told you early on?
Any advice, encouragement, or personal experiences would mean so much to me. Thank you for taking the time to read this. ❤️

For the younger members of this community — mid 20s to 40s — did you find it difficult to get taken seriously when your symptoms didn't fit the expected profile? Clean bloodwork, no diabetes, no autoimmune issues, but real and debilitating nerve pain from prolonged desk work. I spent a long time feeling like I was imagining it because the tests kept coming back normal. Anyone else experience this?

It was an error. Who in their right mind would have thought that an insurance company would make an error? /s

Doctor sent script today. Went on insurance hold. Spent an hour calling the pharmacy and CVS Caremark. For some reason, the pharmacy submitted my regular quantity for 17 days instead of 30. They approved my full 30 day quantity in the email to me for 17 freakin' days! Submit it for 30? Nope. Ask them to fill it for 17 days full amount? Nope.

Instead, they will send me a revised letter with a denial. She was very nice and said I could appeal it. I told her my doctor won't appeal because he doesn't want to be seen as not helping in reducing the opioid epidemic.

Here's what I did not know. She said I could appeal it myself, and provide an explanation for the "medical necessity". Why would my doctor prescribe it if it wasn't medically necessary? Ugh. Well, I'll try it, and I'll let y'all know if I have any success.

Again, I hope that this is received as I intend it, as helpful information for the community. I know I am lucky to have a PM doc. who believes in opioid therapy and understands what we go through. I was referred to him after a failed discectomy and he has done all my injections, RFAs, and my spinal cord stimulator (removed last year for various reasons, but that's another post) since (since 2013 when it started).

https://www.reddit.com/r/ChronicPain/s/bC8xKC2n6G

Hi everyone,

I’m looking for advice for tapering off duloxetine. I had 30mg for 2 months but as it doesn’t work for me with too much side effects, I can stop it.

My psychiatrist and pain doctor told me to stop progressively BUT the pharmacy don’t have lower dose. It’s so much stupid ! Am I the only one to find it absurd as we know antidepressants have to be reduced slowly ?

Any way, how was your experience stopping duloxetine ?

Thanks

(Not looking for a diagnosis, just airing out my frustration).
I’ve (23F) have had lower abdominal pain for 3ish years now on and off. I’ve gone months with hardly any pain and months with pain every single day. I’ve been given no explanation for this except for “pelvic floor dysfunction” but that simply doesn’t make sense to me for the severity of pain I feel. I am fat so I realize ultrasounds may make it harder to observe my pelvic organs (I’ve lost 60lbs in 6 months so hopefully my upcoming ultrasound might give me an answer, more on that later) and I haven’t had a laparoscopy because I’ve been in school and almost every medical professional I’ve been to made me feel like I was overreacting and didn’t need one. I’ve had a colonoscopy, I’ve gone to gyno idk how many times, I’ve gone to Rhuematology. My only damn hints are my own pain, positive ANA and being told I’m hypermobile by a few physicians (my PCP said I probably couldn’t even get a genetic test for HEDs because I don’t have a family history BECAUSE IM ADOPTED)
I was starting to think this might be getting better because I was having far less flares and I was able to have intercourse with fairly minimal pain, until a few weeks ago when I very briefly did (stopped because I started feeling pain) and I have been in pain every single day since. I am miserable. I have never experienced constant pain like this in my life for this long. The last time it was this bad I had apparently a “minor UTI” (why the hell would I be 6/10 pain for a minor uti???) My abdomen feels bloated and hard, the only relief I get is while lying down and even that hardly works right now. Sitting up hurts and standing up is even worse as the pain radiates down my legs. I never take pain medication apart from anti inflammatories due to my birth parents abusing substances, but I took some today and the relief lasted probably two hours. The pain is reducing my already low appetite and I’m trying to lose weight in a healthy manner (recovering from an ED as well - 40 days in and doing pretty good so far!) but I can barely manage more than a meal and a few snacks a day. I’m getting an ultrasound soon due to elevated liver enzymes and my PCP ordered another autoimmune panel and hepatitis panel. I’m honestly so scared that something is seriously wrong with me. I’m praying for a mild diagnosis but it feels so fucked up i want to be diagnosed with anything at all. I just want this to go away. I’m also a bit worried about the weight loss because I’ve only been actively trying to lose weight for 2 months and yet I’ve lost 60lbs in 6??

I have been hospitalized since 6/22 with severe pain and a prolonged cough. They recently found staph pneumonia in my sputum and started antibiotics. The doctors also believe opioid-induced hyperalgesia is contributing to my pain. My IV opioid taper is over, and I am now only receiving oral medication, which has not consistently controlled the pain.

I currently have severe lower-to-mid left back pain, recurrent right outer-thigh nerve pain that may now be changing location, and major functional limitations. I still need assistance getting out of bed and using a bedside commode. I have also reported intermittent double vision, blurry vision, and a peripheral light in my left eye.

The hospital may discharge me tomorrow, but I have several unresolved safety issues:
I cannot reach my grandparents and do not know whether they are home or still out of state.

I still require assistance getting out of bed and toileting.

Someone would need to empty and clean the bedside commode.

A couch and heavy dresser must be moved before the hospital bed can be delivered.
Friends may be able to move the furniture, but this is not confirmed yet.

My mother and stepfather, who might otherwise help, are currently sick with respiratory symptoms.

I am being transported home by ambulance, but transport alone does not solve the lack of help once I arrive.

I see three possible options:

Go home tomorrow and hope the equipment and caregiving situation can be arranged.

Request a formal hospital-to-hospital
transfer for an independent reassessment. This would bypass a new ER evaluation, but my current doctor and records would be involved, and I worry the receiving hospital may simply accept Vanderbilt’s conclusions.

Accept discharge and seek care at another hospital, either going directly by ambulance or trying home first and calling another ambulance if I cannot function. I understand another ER might not admit me or offer a different pain plan.

Questions:

Would discharge be unsafe when I still require assistance transferring and do not have a confirmed caregiver at home?

Should I insist that PT/OT and case management document my current assistance needs before discharge?

Is a formal transfer the safest way to obtain an independent assessment, even though my current team will communicate with the receiving hospital?

What should I ask case management to document or arrange before I agree to leave?

Is there another option I am overlooking, such as short-term rehabilitation, skilled nursing, or delaying discharge until my home equipment and assistance are actually ready?

I am not asking for guaranteed IV medication or zero pain. I want a medically safe transition and a realistic plan that does not leave me unable to get out of bed, toilet, or care for myself once the ambulance leaves.

I’m just exhausted and in pain. There’s probably other words but I can’t find them.

Does anyone else deal with nerve pain from cervical nerve roots and have to work in customer service?

I am crying ugly right now because it’s so hard to function. My spine fusion I think failed. I see PM&R next week and I know that crying and stress makes pain worse, I just am taking a moment to mourn the person I used to be.

My pain really flared after a 4 hour round-trip car ride on Sunday :( I just need a space to cry, kick, scream, and vent I guess since doing all of those things in real life make nerve pain worse.

I literally had everyone I spoke with questioned me on my competency today. Every person ask me to do my job three times, like call the same person again and again as if the specific surgeon will suddenly pick up the line and schedule to see them as a new patient when they are calling the most general hospital scheduling line and I’ve already told them I’m sending the Doctor a high priority message.

I am loosing my mind talking to people, even asking me to do tasks for them unrelated to the company I work for. Patients asking me how to fill out forms for out of state clinics, or off-the-wall documents 1000% unrelated to my job.

What gives and how do I get people off the phone who keep pressing me for more and more and more info? My nerve pain is screaming at me from the inside out. I can hardly hold the weight of my arm and head anymore and I want to collapse on the floor.

How do I deal with even socializing while in severe pain? Sorry for rambling on to reddit

I have been having worse and worse chronic pain in the last six months, in January I developed to Trigeminal Neuralgia and now I am trying to figure that out and working at a summer camp as a full-time camp counselor. I work/am on call 22 hours a day and I absolutely love my job, but it doesn’t give me very much time to deal with any of my chronic pain. I’m having a ton of trouble balancing it. I’ve also had POTS, Migraines, and chronic fatigue for the last few years, but every time a new thing stacks on top of those it feels like I have to start over again. I haven’t really been able to find anyone who knows anything about Trigeminal Neuralgia and it would be absolutely incredible. If I could hear from someone about what what has worked for them. I don’t want to quit my job and I don’t want to lose the friends but come with my job, but I’m really afraid that I’m gonna have to because I’m in too much pain to do it.

I’m at my lowest right now, it’s affecting me so bad mentally I wish it can just go away. I just hate this so much and no one around me would understand. I’m 27 I’m now really depressed and anxious. Does it ever really get better? how do you cope with what life used to be? How am I not supposed to feel this way when my body is not okay my therapist says to distract myself I have tried and tried even when I feel awful I try pushing through I’m just drained.

I'm not blaming my pain but I'm noticing that when people steal peaches from my neighbor I get really upset. My fuse is getting shorter, It may be that I'm just getting older too. I've confronted a few, they always say Oh I thought this was a community tree. I've told them knock on the door ask before you take.

this may be a very obvious question but: i don’t have any actual medication allergies so i haven’t put any in my doctors portal. but there are some medications i can’t take because of the risk of severe interactions with meds im currently taking. i’ve already had instances where ER doctors in the same hospital system will give me medications that have serious risks with my current meds (luckily didn’t have any complications though).

should i put those meds in my allergies list? i wasn’t sure because they’re not technically allergies.

Long story short I’ve had two OHS in the last 6 months and was wondering if there is anyone in this sub that’s had any and managing pain/chronic pain

Actually got to see my surgeon. I had three disc in my neck fused on both sides in the front in January. Now I have to get c4-t1, so five disc, fused on the left and two screws inserted on two disc on the right. Surgery will be in about a month. He said it’s more painful and a harder recovery and longer stay in the hospital probably 2-3 days. Then I guess my mom can stay with me a few days but she can’t stay for an extended period so I’m afraid of when I’m home alone how will I be able to take care of myself because I barely can now. Plus it’ll probably lead to needing more surgery in the future. I already lost my ability to work, outside of my mom only one person really checks in and talks but she can’t really hang out due to her busy life, the smallest task shoot my pain up sky high and leave me exhausted, I’m bedridden 90% of the time. Only go to doctors appointment and my mom drives a hour to help me go to the grocery store. I’m completely alone and isolated so my major depressive disorder is terrible. I’ve had the same therapist for ten years. She knows me and how uncontrolled suicidal ideation is just a part of my bpd. Let me express it but it’s all good. Even she asked me multiple times if I was actually going to hurt myself. Music and concerts have been my one true passion, my place to belong since I was in middle school. I have to drive out of state for most so I had to give that up. Even shows in my town I could get to in like ten minutes I can’t stand or sit long enough. My favorite band, ones who’s music was the only thing that made me feel understood like someone else out there knows what it feels like, is from Sweden and rarely tours here. For reference last time was 2019. They are playing two shows in Ohio in September, so right in my recovery window. I had tickets for months because I didn’t foresee this surgery. Even had hotel room booked. Like I said I have no friends so now I can’t go to the one thing I was holding onto because no way I can drive four hours to Cleveland and then a day later two to Columbus and then two back. I’m only 38 have both hips replaced both si joints fused three disc in my neck fused on both sides of the front. Now I’m getting five in the back. I had to apply for disability luckily my 401k and the fact I can get disability payments through my old job are keeping money from being an issuefor right now. I just don’t see the point anymore. I could never destroy my mother like that but I just wish she’d tell me she understands and it’s ok for me to go. Sorry for the insanely long post. I just had to have somewhere to get it out. Thanks for all the support from you guys on previous post

Come join us!

https://www.youtube.com/live/-zIll7WIXCc?is=lXaJpYNbDhB2Xvje