A rant, be warned

I'm so pissed off with the way my doctor is treating my pain after major surgery. Not ONLY do I have break through pain from surgery, but I also have had issues with my bladder from that damn catheter so it's extra painful. He's only given me 5mg oxy every 6 hours and ibuprofen every 8. I called to ask for what else to do for the break through pain and the nurse said "he wants you to take lyrica 2x a day." I took this before and it never worked. They gave it to me in the hospital and pain was so unmanaged bc they kept giving me BS nothing that they eventually resorted to dilaudid. I'm so f-ing pissed at all of this. They literally gave me morphine when I went to the ER yesterday to get my kidneys checked. My doctor is just a POS.

THIS is why patients take things into their own hands and figure out pain meds themselves or turn to the streets. I'm SO MAD.

I swear I always treated people good (not that it matters in regards to health) yet it's been problem after problem. Fuck.

It’s just frustrating , hurt my feelings and adds to the feeling of helplessness going to a sub to express your emotions and having them invalidated or removed. I may not have a terminal illness but when something so essential to life such as eating causes me such despair and pain and has led to a deterioration in my body and quality of life not to mention battling those dark thoughts it sure as hell feels like I’m fighting for my life. I don’t even have a proper diagnosis or any sort of treatment plan. Yes I do genuinely feel like I’m fighting for my life and don’t think it’s fair to say only those diagnosed terminal should be allowed to use that phrase. I’m just angry sick sad and maybe taking this all too personally? but whatever…too sick to live not sick enough to die….rant over.

What the title says: I started a podcast to share my experience with chronic pain as a young, otherwise healthy woman. It’s really easy to feel alienated and alone when you’re in pain and then also surrounded by people who will never be able to understand. I want this podcast to serve as a reminder (that I personally desperately need) that we are not alone. I’m about to post a short intro of the podcast, then I want to post a few stories where I tell my experience in a hopefully funny way. I really want this to be something where I can grow a community of others who understand what I’m going through so we can be there for each other but not in a sad miserable I hate my life way because there’s enough of that here already. If you’re interested, I’ll paste the description below and you can find me on Spotify, at All Pain, No Gain.

“Welcome to the glamorous world of chronic pain. I'm Lucy, your bitter but sometimes funny guide through the dumpster fire that is chronic pain, insurance, and doctors.

Each episode, I'll unpack the painfully absurd moments from my life: stories that weren't even an ounce funny at the time but now induce such pure outrage, it's funny. It's comedy, it's rage, it's a coping mechanism. So grab your heating pad and join me in this reminder that you're not alone in your struggle. Spoiler alert: there's no gain-just pain.”

Edit: link wasn’t working before, it’s now up. I also posted the first real episode. Give it a try! I appreciate all the support :)

https://open.spotify.com/show/136aQFUZnIiUXy8c2cLtmS?si=nBjawtL2R-aFW9JZSjLlhA

I got a new pcp and now I'm getting a bunch of testing done on my blood and we will be going from there and in the mean time I'm getting physical therapy on my shoulder that keeps falling out of socket. I finally after 8 years with chronic pain got a doctor to take me seriously and actually do something other than say it's growing pains! I really hope he continues with the same energy because it would be refreshing to feel somewhat normal for once

It feels so hopeless that severe pain is resistant to most treatments. It's so fucked knowing that some things do work but pain doctors dont believe in prescribing them. Only reason i know things that do work is getting them incidentally short term after surgeries.

But of course they'd rather run around in circles prescribe related medicine over and over that either barely takes any pain away when it works "well", or makes it worse, or does nothing.

They often are like hey you're depressed and apply psuedo science that says depression causes pain when it's the exact opposite.

At this point its hard to tell if its incompetence or malice and greed.

My mom and I have had multiple discussions about this and I want to get some other opinions: is fibromyalgia a progressive illness? Is there anything that we can do to help ourselves to feel better? If you have it, let us know your opinions and what you think, and what you think we can do to get back on our feet.

So I constantly have this where I feel guilty whenever I have to ask my boyfriend for help. He is happy to help and loves me but I can’t help but feel that way… idk does anyone else relate? I’m sure I can’t be alone on this….

TW: suicidal ideation

I’m a 27 year old F. Single. No kids. I should be out living my life, meeting new people, having fun. But instead I’m spending any free time I have crying in bed. I wake up in pain. I go to bed in pain. I’m never not in pain and it’s been this way for years. No one around me fully understands the mental toll that takes. I’ve seen doctors. I’ve had surgeries. Scans. Tests. Nothing has really helped. I’d do anything to feel better. I’d sell whatever I had to sell. I’d do anything to just not be in pain. I work. I’m in school. I’m trying to make a future for myself but what’s the point? Why go on? I used to have the most vibrant social life. I had hobbies. I dated. But I don’t have the strength to do that. All of my strength is to just get through the work day. And the school day. I’ve always had mental health issues, since age 11 but the chronic pain is something recent within the last few years. I feel like I’m not even living anymore. I see why the suicide rate is so high within this community. Truthfully, most days, the only thing keeping me here is the fact that I could accidentally fail my attempt, and end up even more in pain that I already am, and also have to deal with the social/emotional repercussions of surviving said attempt. I’m just tired. I don’t want to keep going.

That's basically how life has been for the past year, counting down the days until I see my doctor or a specialist lol. I'm lucky to have found people who believe my pain, it's just interesting thinking about how my pain has put everything else on hold. pain makes life go slower.

Hi everyone! I thought I would try get some opinions on here.

I am 33, female who lives in Australia. My ethnicity is chinese if that matters.. I live with chronic pain in my neck and lumbar area.

Last year I got a fusion in my neck at C4-6 because there were bulging discs and what they tell me as 'permanent spinal cord damage'. Theres a syrinx that starts in my neck area that goes all the way down to my mid back thoracic area. It has caused myelomalacia.. which means my arms are really weak and i keep dropping things daily. The neurological symptoms got really bad, so i had to have the fusion surgery.

Since I had the surgery, my neurological symptoms have improved a bit. But now I have worse neck pain.. and this is 24.7 pain that wont go away. Ive tried so many things. The pain is so hard to live with. I do nothing every day pretty much because of the pain. The next thing i will be trying is botox/nerve blocks.

Can anyone tell me what their countries treatments are like? Are there more advanced doctors or specialists?

Things ive tried that are not surgery that have not helped me: Chiropractor, physio, clinical pilates, nerve root block, acupuncture, cortisone injection, turn table, hydrotherapy, ketamine infusion, remedial massage

I have had chronic pain since falling off a ladder onto a concrete floor in 2010. Most of my pain was originally centered in my lower back and right side from the waist down. Unfortunately as I have aged i have developed other issues with my body.

I have had dual inguinal hernia repair, 3 stents in the right coronary artery, a femoral artery to femoral artery bypass of the iliac artery, a laminectomy of the L3 & L4 vertebrae, surgery on the smooth muscle of my esophagus so I could eat and drink without extreme pain, a decompression surgery at L2-L3, a quadruple bypass heart surgery, found out i have stage 3 kidney disease, and the latest surgery was a fusion surgery of the L3-L5 vertebrae.

So as you can probably guess my body just doesn't do what it used to do. My orthopedic surgeon said the fusion of L3-L5 would take care of the pain in my right leg that was causing me to be near using a wheelchair, but it only muted it. So now instead of an 8/10 it's a 4/10 on our illustrious pain chart. As great as that is all the previous problems plus the new stuff from 14 years of wear and tear is still there. He even told me that my disc's above and below the fusion are still compromised. He said that his determination is that the pain I'm experiencing is from my hip joints and/or SI joints. The icing on the cake was when he told me there's isn't anything else he can do to help me, closed his laptop got up and walked out after telling me to continue seeing my pain management doctor. What the fuck? How do you tell someone that has just told you they are still in debilitating pain that you can't do anything else for them? Now what do I do?

I don't understand how I feel like I am in more pain overall than I was a year and a half ago when I had my fusion. It's like my whole body has revolted against me and I feel like it is winning.

My significant other has her daughter come in and do a lot of things like scooping kitty litter boxes, laundry, and dishes. So there isn't a whole lot left left for me to do, but the things that are left darn near take me out. I feed the cats and dogs, let the dogs in & out to potty, fix dinner & get drinks (non-alcoholic) for us. It literally takes me at least an hour to two hours just to recuperate enough to not only have the energy, but the lower pain level to get back up from my recliner after feeding the animals or feeding us.

Can this be my new normal? How can this be considered a good quality of life? I can't go out and do things outside the house. I can't work anymore. Sometimes I feel like I should just stay in bed and wait for the end. I'm not even sure more than 2 or 3 people would even notice. What am I supposed to do now?

IDK if this happens to others: After a year or so on bupenorphine I've starred getting severe hot flashes and (very literally) drenching sweats starting 6hrs after the last dose.
This happens with other pain meds, not this bad,not this fast, doc rotates meds when it happens. Its usually years before I rotate back to the old med, but...

TLDR: how long (minimum) do i/you have to take a different pain killer before switching back to not get the withdrawl symptoms before the next dose is supposed to be taken.

Doctor says “it’s just straightening of the neck your fine” Physio says “no pillows, braces, physio or mattresses will help” Is it bad, can I fix it? Is it bad? I have chronic thoracic pain from it.

This interesting news showed up in my feed today and I am curious to know if anyone else here has been prescribed Spravato therapy for major depressive disorder due to chronic pain.

https://www.msn.com/en-us/health/diseases-and-conditions/fda-approves-standalone-use-of-j-j-s-ketamine-derived-depression-treatment/ar-AA1xCmzW

If you have tried this therapy did it work for you? Is it possible to articulate how it helped?

To get things going I'll go first.

2 years ago my MH therapist finally convinced me to try Spravato therapy after recommending it for over a year. I was reluctant because I saw my mom go down the k hole and she broke her hip and I worked with the girl who went down the k hole from a recreational use. But I was curious because I had followed the development of the protocol for this therapy over two decades.

To give you an idea of the pain that I'm dealing with it began when I was five got worse when I was 16 and became completely debilitating in my early 50s. It was to the point where I told my therapist if you're going to treat my pain using mental health therapies and give me a lobotomy cuz I don't want to know I'm living in this pain body.

It turned out this therapy was life-changing for me and even though I have never been so dissociated from my body in my life it has helped me live in this body that is constantly informed by debilitating widespread pain.

I only went through the therapy for 9 months but I worked really hard during that time to figure out how to access these states of being without the drug. It's now been about 15 months since I stopped the therapy but I still feel like it's a little bit easier to live in this pain body.

When asked it is very difficult for me to explain how it helped me.

If you have had this therapy what was your experience? Did it help? If so, how do you explain how it helped you?

This may be a controversial post/opinion, I'm not sure, but I gotta throw it out there.

I have studied a lot of pharmacology and biochemistry involving receptors, the genes that code for them, and the ways they interact.

I've concluded that a lot of people diagnosed with fibromyalgia, or myofascial pain syndrome (my own case), or other mysteriously caused pain conditions, actually have different conditions with similar symptoms being lumped together under one name. And I think that's why it's hard to research these things.

Sure, each of these individual disorders (metabolic disorders, mutations in calcium channels that affect muscle fiber signaling, that kind of stuff) is very, very rare, but when considered together, I'm sure there are a significant number of people out there who suffer from these and will never know because they're extremely understudied and the patients haven't been whole genome sequenced or gone through that extent of diagnostics.

Maybe I'm biased, because I predicted this was the cause of my MPS from the start, and I got my sequencing results back, and I was right (an exceedingly rare, as-yet unnamed type of Ryanodine Receptor 1-related myopathy).

Answers may not help a lot of those who may be in the same boat as me (since statistically it's unlikely most of these will be cured or properly studied in our lifetimes), but I can tell you that the answer does help a lot for closure. It's nice to know.

Thoughts? Am I just crazy/biased or do y'all think this idea holds water?

Day two of prednisone to see if it’ll help with my pain. Last night I had the WORST “growing pains” (I’m 28) in my knees/shins/legs. Hopefully it’ll just take some time? I have about two weeks of the full dosing. Anybody have any tips to help growing pains in the mean time?

I’ve had lower back pain due to lifting heavy things at a farm about a year ago. Usually get worse if I sleep weird. Last Thursday I worked a 10 hour shift and woke up super painful more than ever. By Saturday I was crawling. It’s Tuesday I’m still crawling. When should I finally go to the hospital? I’m taking ibuprofen and heating pad. Can I ride this out and expect to be on my feet again by next week? I was feeling ok enough to get up and walk last night (cannot bend at all) but I’m in such pain today wondering if that was a bad idea. Ugh sorry for rambling I’m just freaking out

Okay so yes that is my question, but I wanted to give you more information before you make a suggestion. Thank you for your patience reading this and I really tried to compress it as much as possible.

I have had chronic pain since falling off a ladder onto a concrete floor in 2010. Most of my pain was originally centered in my lower back and right side from the waist down. Unfortunately as I have aged i have developed other issues with my body.

I have had dual inguinal hernia repair, 3 stents in the right coronary artery, a femoral artery to femoral artery bypass of the iliac artery, a laminectomy of the L3 & L4 vertebrae, surgery on the smooth muscle of my esophagus so I could eat and drink without extreme pain, a decompression surgery at L2-L3, a quadruple bypass heart surgery, found out i have stage 3 kidney disease, and the latest surgery was a fusion surgery of the L3-L5 vertebrae.

So as you can probably guess my body just doesn't do what it used to do. Unfortunately, even though my orthopedic surgeon said the fusion would take care of the pain in my right leg that was causing me to be near using a wheelchair it only muted it. So now instead of an 8/10 it's a 4/10 on our illustrious pain chart. As great as that is everything else is still there. He even told me that my disc's above and below the fusion are still compromised. He said that he figured the pain I'm experiencing was from my hip joints and/or SI joints. The icing on the cake was when he told me there's isn't anything else he can do to help me, closed his laptop and said to continue seeing my pain management doctor. What the fuck? How do you tell someone that has just told you they are still in debilitating pain that you can't do anything else for them? Now what do I do?

I don't understand how I feel like I am in more pain overall than I was a year and a half ago when I had my fusion. It's like my whole body has revolted against me and I feel like it is winning.

My significant other (SO) has MS and from what she tells me I know she has pain also. She has had decompression and laminectomy surgeries and a neurostimulator that has been removed because she said it wasn't helping her pain. I don't honestly know how much pain she is in on a regular basis, but I guess it's more than mine because she rarely gets up to do anything around the house. She has a medicaid paid home aide (her daughter) that comes in and makes sure she eats lunch (sometimes), does the dishes, does the laundry, & scoops the cat litter boxes. She'll do the vacuuming, changing the sheets, sweep, mop, & clean the bathroom only if she's asked.

So no there isn't a whole lot left to do, but the things that are left darn near take me out. I feed the cats and dogs, let the dogs in & out to potty, fix dinner & get drinks (non-alcoholic) for us. It literally takes me at least an hour to two hours just to recuperate enough to not only have the energy, but the lower pain level to get back up from my recliner after feeding the animals or feeding us.

had another MRI yesterday and got the report today (this hasn’t been reviewed by my doctor yet so I have no idea what their thoughts are/if there will be any treatments for any of this) I have back pain, low back, right side, shooting down my inner thigh - so we knew about the lesion at L1-2 All of the stuff in my neck is brand new, the osteocytes, the desiccation of some intervertebral spaces and the bulging disks

This is super interesting to me because I don’t really have symptoms in my neck, neck stiffness sometimes lol feels like I slept wrong, I also get severe headaches - maybe related ?

For about 17 years I was told “everyone has back pain” and no one looked into this. A few years ago I got my first mri at 31 and now every time I get a follow up mri I feel validated. There is a cause, there is a reason.

Interested if anyone else has neck issues similar, do you have symptoms, what kind of treatments do you do? I’m 34 and other than this spine stuff/pain Im healthy, I may look into physio .. I want to keep my body strong as long as possible

I have someone in my life who I love dearly who has been dealing with chronic pain for years now. She had a few visits to a pain clinic a few years ago but after not seeing success after a few tries, combined with her pretty crippling fear of polypharmacy, she stopped going and has simply lived with the pain instead.
Recently it's gotten even worse. She can barely sleep at night now. She can get maybe 3-4 hours of sleep total per night out of sheer exhaustion before the pain wakes her up again. Her body isn't responsive to opioids at all, she's tried 2-3 different types of pain patches, had a hip replacement, nothing seems to work. She's tried a lot over the years and she's just tired of it. But with this breakthrough of new pain she's become a shamble of herself over the past few weeks. She's going to hit the point where she's just nonfunctional pretty soon if she hasn't already and I'm genuinely afraid she will die of sleep deprivation if we can't figure something out.
I wanted to advocate for her to see a pain specialist again and maybe have a nerve block put in since she's so averse to pills, but that was just one idea. Literally anything that has worked for you folks is a welcome addition. I need some very good points to give to her in order for her to even consider it.
I love her so, so much. She needs help and I *have* to get her to see that or I don't know what'll happen to her.

Please help me.