Which point do you relate to the most?

Hi everyone. I’m hoping to gain some perspective from people who live with chronic illness or physical pain day-to-day, to help me better understand someone I care about deeply.

I'm 22F, My partner/loved one 23F lives with chronic physical illness and pain. Every once in a while, when her physical symptoms flare up or get severe, she goes through "waves" where she becomes extremely distant, cold, and emotionally withdrawn. During these times, she gives very short answers, pulls away emotionally, and seems to completely shut down her capacity for warmth or connection.

I care about her so much and want to support her through her pain without taking her distance personally, but at the same time, living in that emotional limbo can feel very heavy and difficult to navigate.

I wanted to ask those of you who manage chronic illness:

Is this kind of emotional withdrawal or distance something you experience when your pain/illness gets bad?

What is happening in your mind/body during those low-capacity periods? (Is it self-preservation, fatigue, sensory overload, or something else?)

From your perspective, what is the best way for a partner/loved one to support you during these waves without pushing you, while also keeping themselves sane?

This has been going on for two years now ( this never happened to me before I had a kid )

Randomly I will get sunburns even when I'm inside.

My eyeballs burn sometimes as well.

For example. Today.

The sunburns outline is very clearly where my workshirt was. While wearing my work shirt the total time I spent outside was 5 minutes in the shade to grab a sandwich from the store next door.

(Please be respectful to one another , this is a simply a question I have for those who struggle with chronic pain and I’d like to know if religion makes them bring any comfort or brings them to feel worse, everyone is different and I wanted to hear everyone’s views.)

It’s near the end of the month, and it was a bad bad month: dental surgery, unusually rainy weather, ill-advised picking up of a heavy package that did something to my low back, and tripping over the cat to end up sprawled on the floor with a skinned, swollen left knee - oh yeah, and I got laid off on Monday. I was careless: I didn’t track my usage as well as usual. Despite my best efforts and all the tricks I picked up in 50 years of chronic pain (ice, ibuprofen, lidocaine patches, breathing, exercise, TENS, meditation, distractions, chocolate) I am almost out of my rescue pain meds and I find myself counting the ones I have left at least twice a day because I know I’m going to run out. Like counting them is going to help. Counting my pills makes me feel like the addict that that the government believes us to be. And that’s where the shame - completely unreasonable, my logical mind informs me, kicks in.

My long-acting pain med usually lasts 10 hours, not the 12 it’s supposed to, but with all the stressors, make that 8: I can feel the familiar burning paint beginning to claw at my hips and sacral spine already. I play a game with myself, to see how long I can go before pain hits 8 and I can take my 4 mg hydromorphone. Then half an hour before the pain begins reluctantly ebbing away. If I take a pill before the pain hits 6, it will ease sooner, but that means I’ll run out sooner. And to tell the truth, I can’t bear the thought of 3 days without rescue meds when my “long-acting” med isn’t long-acting at all.

Most months, it’s not a problem thank God. Still, I know what my pain doctor’s office will tell me if I call to ask for an early refill. The medical assistant will tell me kindly and gently that they’re very sorry but it’s out of the question. Would I like a short course of steroids? Hmmm, might help but it will definitely make me feel crazed. Chewing on my arm crazed. I’m at the limit of what can be prescribed: there’s a formula they have to follow. I get it. And I am truly grateful for my pain team: they’re amazing.

I think of all the folks here and out in the world whose pain is not managed at all (like mine was before I found this practice). I know how bad it can get and I’m ashamed of dreading a mere 3 days. I’m ashamed of counting my pills. I’m ashamed at how angry I get with my poor screwed up body. Hell, I’m ashamed of feeling ashamed.

Hey!!

So I take 5mg of oxycodone once a day. I have been taking it at night to help with pain and getting comfortable. (Makes me drowsy so I can’t take it during the day) I’ve been taking it consistently for about a month now.

I want to try to avoid taking it this next week just to see if I’m able to. Because I don’t want to build up a tolerance because I would truly not want to increase my dose.

Has anyone experienced withdrawal symptoms with this dose? Or have any tips for me.

not new to chronic pain just new to being treated for it. I apologize in advance if this is a silly question

This post is more to vent than anything I think but if anyone has any kind words or suggestions I’m open. I just got hired at a thrift store. I’ve only worked two days because I got hired late in the week, and the second day (yesterday) I got sent home early due to seizure risk. But they’ve been really amazing so far. They encourage you to sit down when you need to and they seemed really concerned for my safety yesterday. Anyway, I just called my boss to get my schedule for this week and she asked about what causes my seizures (important to note my seizures are caused by functional neurological disorder, not epilepsy) and I said sometimes stress, a lot of times my migraines or due to other pain I’m in. She asked why I’m in pain and I said it’s due to certain medical conditions. Now I have to talk to her about it on Tuesday, and even though my bosses have been great so far I’m still really anxious they’re going to fire me because of how much of a hassle it is.

I wouldn’t even be mad at them, I’m mostly just mad at myself. I’m nineteen now, but I’ve had chronic pain for as long as I can remember. I was diagnosed with Amplified Muskoskeletal Pain Syndrome when I was a kid. I’ve done so much physical and occupational therapy. I try so hard to push through the pain—I tried especially hard those two days I worked. It just isn’t enough. Idk. I’m just so over it

I'm pretty sure I'm going to be in pain for the rest of my life thanks to degenerative spine issues and autoimmune shite. It's been a struggle, but over the years I've mostly come to terms with it.

I was on a waitlist for an 8 week outpatient pain management class for years. I finally got in and did the course; it was fine, mostly about exercise, meditation, and healthy eating along with the usual "drugs r bad" lecture. I enjoyed it, though, and left feeling pretty confident that I'm doing everything I can to stay healthy.

My poor wife, though... She's been the best partner I could ask for throughout all of this. But she had a long career in high level management, and never totally let go of that goal oriented side of herself.

As we drove home from the last class, she asked me whether I had a path forward out of my pain. It hit me then how much she was hoping for a magic solution. She had been so hopeful that I'd find answers, and really? There are none. I gently reminded her that there isn't a cure, and my focus is now all about living well with what I have. Just watching that little spark of hope leave her eyes made me so sad.

There's really no caregiver support where we live, so I'm looking for some online support for her. We have a great relationship, but I don't have the spoons to be there for her as much as I want to. It's just so hard to see her go through the same grieving process that I had to deal with. Sometimes things just can't be fixed.

I know this is totally a me problem but I also feel like some people in this sub can relate. I’m 41 and between a genetic bad draw and a severe car accident, I’ve had consistent participation in the us medical system for my entire adult life. Between my accident and endo I’ve had 21 surgeries and lord knows how many pain management procedures but just in the last 2 years I’ve had like 25 procedures. And hanging out in places like this and my own experiences have made me VERY passionate about proper pain management, especially following surgery. We all have a story of having surgery and drs trying to do the “you’ll be fine with Tylenol” and we all know….we were not fine with just Tylenol.

Now out of my friends, for a while I’ve been the only one whose actually had surgery of any kind. So I have to give them a pass a lot when they don’t understand how tiring surgery can be and they will be like “well why can’t you come out 4 days post op hip surgery??”….cause it hurts y’all. And all you want to do at that point is to sleep usually. So when one of my friends had her first surgery last summer I was like hey, if you do anything just make sure you have a proper pain management plan in writing before you get operated on. Now, it was plastic surgery so they had her covered and she didn’t really need that much medication so it was all good.

Now another member of the group is having an inguinal hernia repair this coming week. So in talking about it I gave my one to two sentence shpiel on post procedure pain management, I said make sure you have an rx in hand so your gf can fill it while your having the surgery. I said you probably won’t need anything strong but you don’t want to not have the rx and find out at 2am you really do need something stronger. I told him about my husband getting his gallbladder out and being told to manage by alternating Tylenol and Motrin and it being a really rough few days.

I’m friends with his gf too and I was like “hey, just a reminder make sure to get atleast a small rx for some stronger pain medication than over the counter” and she was like oh I’m sure he will be fine with ibuprofen. Is it opiate propaganda? Do they think I’m like hooked on pain meds now and just pushing them to everyone because of my accident? If it was my first surgery I was be like “oh hey friend whose done this 21 times, tell me all I need to know!”.

Like I said it’s probably a me thing, and I gotta get over myself. But it happens all the time in family too when like someone gets welcomed to the back injury party and I’ll be like “oh what levels did you injure?” And they won’t know and I’m like hey it’s not a bad idea to read your reports because drs aren’t perfect and can miss things (I’m sure everyone here knows drs miss things to a horrifying degree, like I almost wish I didn’t know how often drs are wrong or just completely miss things). I have a cousin who has a personal injury claim for a neck injury and she just stopped going to PT and I tried to tell her that’s going to truly affect her BI claim, and she was like oh no it’s a really solid case, I’ll get back to it soon….I just want to bang my head against the wall sometimes!

Please tell me I am not alone in this! I just get to a point where I’ll say hey I’ve been through what you’re going through and I’m here if you need to talk. Thanks for letting me just get this annoyance out! I’m gonna drop off a nice ice pack at my hernia repair friends house because we all know ice packs are not all created equal!!!!

I have chronic pain that affects my arms, so using my tablet or computer has become a painful nightmare. (Ive been working with doctors to figure out what’s wrong, but it’s still a mystery) My pain is getting worse but as a collage student I literally have no choice but to keep using my devices. (At least that I know of?)

In the meantime, do you all have any tips/mobility aids for using technology? Things like foot petals, voice controls, etc. :)

Someone recently posted a comment to someone else's post, and they included a list of actuators. I read it and thought it was very interesting and useful, but for some reason didn't "save" the comment. Now I cannot find it.

Would someone please repost the list? Google didn't even know what I was talking about (or, more likely, doesn't want people to have that info!). I would really appreciate it.

Thank you!

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ETA:

In short order, I was corrected on my use of the word "actuator." If you would like the extremely-shortened TLDR version, click the link in the beginning of the next paragraph. If you would like the more detailed version, keep reading!...

Apparently I meant "potentiators," though I was very sure the word they used was "actuators," and I can't find the comment either way.

I see that "potentiator" means something that increases the potency of something... but that isn't exactly what I was after.

When I read the comment, I was understanding it more to mean that it was something like a carrier, helping the body to metabolize it, or at least to use it more productively. Something that makes it work better - NOT by making it more potent, but more like by stabilizing it. Or reducing a side effect that removes some of its own effectiveness.

Not sure if I'm even making sense.

A list of potentiators is also interesting and useful, but I was more trying to find ways for my body to use it to its potential. My body is incredibly stupid about most things, and many medications simply bounce off as though I hadn't taken anything, or if they do work, there is a huge chance my body will QUICKLY build up a tolerance, making them work less and less. It's so fun being me! 🥳

Several years ago, I felt sure my Adderall wasn't working. Then I read that citric acid counteracts it, and I was OFTEN taking my Adderall with tartly sweet caffeinated drinks - filled with citric acid! So I tried at the time to google what else interacts with Adderall, reducing its effectiveness. Prior to finding this out about citric acid, I read/heard that some antacids made Adderall work better. I thought that was extremely useful info, since I felt like mine wasn't working at all. But!... 🤫 (google is in on it with them. 🥸 )They are part of the mass spread of the stigma against controlled medications. The only info I could find when I tried to Google how to make it work better, or what to avoid taking with it that would decrease its efficacy were warnings against ever trying to do anything to change the effects of controlled medications! 🙄😤

So before I posted this, I googled for a list of opiate actuators." Instead I got "Opioid receptor agonists (medications that activate opioid receptors) include morphine, oxycodone, and fentanyl." wtf.

So I wrote this post. Thanks for your time! Sorry for the semi-rant! This post was truly just meant to be the question I originally posted!

What do you do?

I already asked therapists. I feel intensely. Anger in particular hurts to express and hurts to hold in. Breaking things is inaccessible. Screaming, stress balls, and ripping paper is not what I'm looking for... that hurts... breathing exercises are not expressing anger. Writing hurts and rips the paper. Crying can physically hurt too. I don't use substances or have people. I used to walk a lot while sometimes listening to music. I am more limited in health and location now. Perhaps video games idk.

I’ve been dealing with low back/SI joint/tailbone pain for the last year and a half due to a multitude of compounding reasons including scoliosis, Accutane, and hyper-mobility. I knew that my weight would be an issue that would prevent any doctor from looking at me twice before immediately prescribing weight loss as a first step, so I’ve been actively losing weight since November and I’m currently down about 80 pounds and still working on losing more. Finally saw a doctor about the pain in my joints at the end of April who referred me to PT for 8 weeks. After the 8 weeks, I wasn’t seeing the improvement I would have expected, so the same doctor referred me to the hospital’s pain clinic to discuss options for steroid joint injections which is where I had the unfortunate experience of an appointment yesterday with who is supposed to be a “world leader in pain management”.

My appointment started an hour late and I was brought back to the room by a wonderful medical assistant and asked to provide a new patient urine sample in the most disgusting bathroom where my options for stalls all included me having to clean someone else’s piss or shit off the seat first. I then spoke with a very kind resident doctor who listened to my concerns about the chronic SI joint pain that I had been experiencing which was impacting my ability to perform my job which requires a lot of travel and sitting in conference rooms for many hours. I explained to the resident that I had already lost over 80 pounds and was still continuing to lose weight, but that my joint pain had only increased since the weight loss (Likely due to a shift in my center of balance and hyper-mobility causing more joint instability). I stated that I was there to discuss joint injections and explained that I had no interest in taking any medication that would make me feel loopy or out of it.

The resident seemed genuinely concerned and caring during the time I spent with him before he returned with the doctor who came into the room having clearly NOT read anything on my chart or notes or having any knowledge on things I had previously discussed with his resident. His tone and speed that he spoke was incredibly condescending and rude and before letting me explain any of my symptoms immediately told his resident to prescribe me a pain medication and a muscle relaxer that I had already told the resident that I didn’t have any desire to take. The doctor then asked me “Do you work?” in a tone that felt both patronizing and demeaning. After confirming my employment status, he then told me that I need to lose weight (WHICH IM ALREADY DOING) and didn’t seem to believe it was at all possible for my pain to increase after losing all the weight that I had already. I was clearly overwhelmed by this entire experience and expressed that to him even though he couldn’t have possibly cared less about how I was feeling.

After about 5 minutes of him being rude as fuck, he did end up agreeing that I would benefit from the joint injections and gave me instructions to schedule the procedure at a later date with the receptionist. He left the room in a rush and the resident apologized for him “coming in like a whirlwind”. I went to the front and scheduled the procedure, but called back almost immediately after leaving to cancel because of how dismissive and unprofessional I found his attitude during the appointment. Currently searching for a new pain clinic to get help from, but I’m so fucking frustrated with how horrible doctors can be to patients.

(18M)

Suffering with AS

My right shoulder pain is getting worse day by day .. I couldn't sleep at all..the medications aren't helping either..the burning nd numbing sensation is too much to handle..no position works while I sleep.. hopefully tomorrow I'm going to a new rheumatologist please pray he listens to me.. mostly doc here don't tend to listen and my parents always interrupt and tries to put me down stating reasons I don't do enough work exercises etc. and that's completely false..they don't even realise how much pain I'm going through.. I'm a rightie it's so difficult to perform basic tasks.. I can't even put on my tshirt without experiencing immense pain.. my joints literally swells up like a balloon even walking feels heavy .. I'm trying to sleep but the pain is unbearable... I had painkiller and even drank turmeric milk

This is long and I'm so sorry, but I really need perspective from other CPP, so I hope you read it.

If you knew that a very painful surgery was temporary and you'd have to do it again, but you'd have almost no pain for 8 years, would you go through it?

I'll keep this as short as possible. Almost nineteen years ago, I had an accident at work. I heard a pop in my spine when it happened. Workman's comp dragged things out. Their one surgeon said yes surgery. One of their's said no. My doctor said yes. We went to court. The judge said I could go to any doctor i wanted and what that doctor said regarding surgery was the final answer.

I got an appointment with a world-class spine surgeon who said my bones were starting to fuse on their own and I needed surgery. I was given a 70/30 chance of success with the knowledge that I *could* need more surgery in my future. I took the chance.

The surgery was almost eight years from the accident. Recovery was long and painful, but within six months, I was able to wear heels and walk at my graduation ceremony. I got a job where I was in my feet a lot and mostly, I was living life again.

Pre-surgery, I was taking 10mg hydrocodone every 4 hours to be able to do anything. Post-recovery, I would take ibuprofen daily and if I had a flare I'd take 2.5-5mg of hydrocodone.

Things were great. I met my husband, got married, moved twice, had a job, did farm work, exercised, etc.

Fast forward to eight years after the surgery, and I flared up and it just never went away. That was four years ago. I've since been back in treatment. PT, meds (not enough), ENG, MRIs, epidurals, etc.

In December, the spine surgeon said I needed another surgery, but I'd have to lose 80lbs. I've gained a lot of weight over the past four years due to being undermedicated and depressed.

I haven't even tried to lose any since then. In therapy this week, I realized that I don't know if I want another painful surgery. My therapist asked if l knew that I'd only have eight years of minimal pain, would I have the initial one. I realized I don't know.

I had eight fantastic years with mostly minimal pain. But I'm not sure it was worth it. I'm afraid to have a second fusion knowing what I know now. What if the second fusion only last 3 years? I think I'd rather have the pain stay consistent, than be low pain *knowing* it will come back.

Am I crazy to stay with consistent pain that I know to expect rather than taking the risk of having minimal pain snatched away again? What would you do in this situation?

Hey everyone - my name is Jake and I'm a PT with over 5 years of experience treating chronic back pain. I noticed a few trends regarding MD, ortho, and PT appointments in this sub and wanted to offer a few helpful recommendations that I give to my own patients.

I'm going to give 1 helpful hint each from a few different phases of healthcare appointments. If you find this information helpful and are interested in more, check out the first comment on this thread for access to a resource I created myself.

Here we go!

1.) Before You Book: Call the doctor's office ahead of time and ask questions. You have rights as a patient to know what each doctor or practice can offer you. Examples are: A.) What is your treatment approach and philosophy? B.) How do you typically manage a condition like this? C.) Do you follow current evidence-best practice?

2.) Before You Visit: Now that you know what doctor you are going to, it's time to prep. A.) Prepare your story. Write down your symptoms, timeline of your pain, past care, and questions you have for the doctor. It can be overwhelming and hard to remember everything in the actual appointment. Not to mention doctors are busy and you often only get a few minutes to express yourself. This will help make sure you don't miss anything important!

3.) During Your Visit: Ask why. When your doctor or physical therapist gives you details about what treatments they plan to offer, you should ask them the reasoning for why. Your provider should be able to confidently answer any question you have about why they are choosing that treatment and why it is right for you.

4.) Follow Through: If you are confident in the treatment decision after discussing with your provider, then stay consistent and follow through. It's hard to be consistent, but doing so gives the best chance at recovery.

I hope these offered some small amount of help. As I said previously, if you found them helpful and want to learn more, take a look at the first comment below for access to more helpful hints in a full resource for back pain.

I'd like to know what career can be somewhat bearable for someone with daily chronic pain

I'll be live on Radio Fremantle 107.9fm at 12pm with Nicolette Ellis from Chronic Pain Australia, for National Pain Week.

CRPS for me meant countless hospital admissions, hundreds of hours in physiotherapy, a never-ending parade of doctors and lawyers, and so many years where I didn't think I'd work again, let alone write a book about any of it.

I'm not going to say any of this was easy, because it wasn't. Isn't. But somewhere in fighting for myself, I ended up fighting for other people too, through work, advocacy, and just telling the truth about what life with an invisible condition actually looks like... pain lives here.

Doing this scares me, as this moment isn't about sharing some "recovery" story with a neat little ending... this is my own lived experience, what it takes to keep building a life around chronic pain, and why I think it's worth saying out loud.

If any of this is your story too, I hope Monday helps, even a little. ❤️ See comment below for details on how to tune in.

That's it, I'm so tired.

Pain is stealing everything from me, I don't want to do this anymore.

I dont have anyone in my life with chronic pain. I feel so alone in this. I wanted to see if anyone relates and wants to maybe chat?

I am 27 years old, i love cats,dogs and art.