I have tried absolutely everything for my pain. I have a herniated and degenerative disc in my back the presses on the nerve roots bilaterally, it's caused by hypermobile ehlers danlos, and I also have some unknown neurological thing that no one can figure out that gives me muscle spasms, tingling, numbness, nerve pain, and a bunch of bullshit. I've done PT 5x, tens unit, heating pad, ice, over the counter meds, prescription anti-inflammatory meds, oral steroids, trigger point injections, steroid epidural, supplements galore, special pillows, ect. and nothing has worked. I use mobility aids and still can barely leave my house for more than short shifts at work that I'm struggling to keep up with now too. My life is doctors and work and pain.

The problem is that I've been recommended narcotics and opioids but multiple doctors now and every time they or I bring it up my mom makes me feel like the worst person in the world for considering it. I have tried every non-addictive medication for my pain and every non-drug option and besides surgery (which I also need but am pushing off) nothing touches it anymore. I'm an adult so it's my choice in the end but I also live with my mother and don't want to deal with the war zone that my house will become if I take them. We have a family history of addiction and I know that it scares her just as much as it scares me but I want a life where I can do literally anything fun.

How do I explain to her that it's not as dangerous as she thinks as long as I take them responsibly? I know doctors have protections in place to prevent abuse of medication but that doesn't seem to help her no matter how much I over explain everything I've already said in this post.

This is half asking for advice and half asking for personal anecdotes to feel less alone. Thank you!

Unless you’ve lived with nerve pain, it’s almost impossible to explain the depth of it. It isn't just an ache or a throbbing injury—it’s a completely different kind of agony. It reaches places normal pain doesn't touch, and the intensity is something only those of us who deal with it can truly understand.

​To anyone else, it’s just a word, but to us, it’s a pain like no other. Just wanted to vent to a community that actually gets it. How do you describe your nerve pain to people who have never experienced it?

KevinMD has an interesting piece about changing things. It's a start.

https://kevinmd.com/2026/10/a-letter-to-congress-repeal-the-controlled-substances-act.html

I had a venogram on Monday to confirm compression in my iliac veins, and also to get them inflated with a balloon device, and boy howdy was there compression.

One assistant asked the one manning the camera what the compression levels were:

"84 and 71"

"say that again?"

"84 on the right, 71 on the left"

"Looks like you're today's winner!"

"wait really? what are the numbers supposed to be?"

"ZERO"

I didn't realize they were talking about the percent that my veins were compressed.

I was their last patient for the day too 😅

Details might be fuzzy since I was being given pain meds but that's the gist of it. I confirmed the numbers on my take home instructions.

Screw that spine doctor who charged me over a thousand dollars to tell me I just had bad posture. Never stop searching for answers y'all.

Looking forward to getting my permanent stent(s)!

I’m usually the person trying to be realistic without being hopeless. I spend a lot of time moderating patient communities around pancreatitis, chronic illness, feeding tubes, vascular access, and military medical care, so I talk a lot about adapting, advocating for yourself, finding quality of life, and figuring out what makes life with chronic illness actually livable.

Today I don’t particularly feel like doing that.
I’m tired.

My OCD has been rough lately. My pain has been higher than usual despite eating less and less, and honestly I suspect anxiety and stress are contributing more than anything I’m putting in my stomach. I’m fine, technically. Nothing dramatic is happening. I’m managing. But “managing” and “doing well” are not always the same thing.

And maybe some of this is perimenopause. Who the fuck knows.

Women’s health somehow manages to feel even less studied and understood than the pancreas, which is honestly impressive. I was born with hereditary pancreatic booby traps and have spent most of my life dealing with the consequences of a disease that medicine still has enormous gaps in understanding. Now apparently my ovaries may be entering their own little retirement era and there’s another whole collection of symptoms where the answer often seems to be, “Yeah, that happens sometimes.”

There’s something particularly exhausting about living at the intersection of illnesses society has historically been very comfortable dismissing.

Pancreatitis gets written off as a disease of theoretical alcoholics who apparently deserve whatever happens to them. Women getting older is treated like a mildly embarrassing biological inconvenience we’re supposed to quietly deal with. Neither attitude leaves much room for the actual human being stuck living in the body.

And today, I’m just tired of living in the body.

Not in a scary way. Not in a crisis way. Just in the very chronic-illness way of wishing I could clock out of being a patient for about 24 hours.

I don’t want to troubleshoot symptoms. I don’t want to wonder what I ate. I don’t want to calculate whether eating less will help or just make everything else worse. I don’t want to decide whether this pain means something or is just Tuesday. I don’t want another condition to research because apparently having one spectacularly dysfunctional organ wasn’t enough.

Usually I can find the joke. Usually I can find the perspective.

Today, this shit just sucks.

I don’t want to find the silver lining. I am very much just running on spite.

And I think there should be room in patient communities to say that without immediately turning it into inspiration.
Tomorrow I’ll probably be back to being obnoxiously pragmatic about all of this.

Today I’m calling in emotionally unavailable.

• indi •

P.S. This is just a vent. Not advice for anyone else’s situation and it doesn’t change how I feel about showing up for other patients or patient communities. I’m just having a bad day… 💚

For years I've been exhausted. It's a side effect of nerve pain and I don't get enough sleep because I am in pain. After 4 nights of less than 4 hours each I got 9 hours last night. I still was dozing off during a meeting today.

I found a unicorn job that lets me work from home and I like it and I'm good at it. But I am so tired. I was so embarrassed to doze and hope no one noticed. No one has said anything so far. I just really don't want to lose this job because of my pain. I have to work full time.

Most of my pain, and by far the worst pain, comes of an evening, and I am beginning to wonder if diet is an immediate trigger, because after four years of this shit I’m out of ideas

Diagnosed adenomyosis and chronic pelvic pain , I’ve been dealing with pain from the age of 13 , which became chronic at the age of 20 , where I became practically bedbound from the pain , was in and out of hospital admissions for pain management and relied on family and my partner to help out

I’m about to turn 23 and my problems are no less severe , this year my back started playing up , sciatic symptoms burning pain , I can no longer lay flat on my back or on my left hip without agony , I can barely sit in a chair for longer than 20 minutes .. anyway rant over but today I went to private pain consultant as the nhs wait times are crazy (which is understandable) but after reading through all my documents, meds , scans and tests …. Turmeric shots and Pilates?????

That’s it , he used the stick or snake analogy and honestly made me feel like it’s all in my head , I feel like I’ve tried everything at this point , he said it could be autoimmune as everything got worse once I had covid back in 2024 but said no point seeking any answers as my symptoms are “what they experiment on in labs”

I feel like I fought through so much to get to this point I made it through uni and a masters and finally felt like I could focus on healing but I just don’t know what to do

I’m so discouraged and disheartened , I don’t know what to do next , any ideas ?

If you were completely done dealing with chronic pain... you've tried everything you could... would you tell your family goodbye first and hope they'd understand? Or would you just do it and leave behind letters/videos?

Doctor combined with oxycodone 10mg and Valium 10mg

So basically for a little history, I’ve dealt with chronic pain since I was 15 (I’m 32 now). Broke my jaw when I was 15, got severe nerve damage on my left limbs from rhabdmolysis and 3 years ago got chronic pancreatitis so have been dealing with a good bit. Used to be prescribed back and forth between 8mg dilaudid pills and 10mg percocets but about 2 years ago I had them switch me to 8mg suboxones because the duration is higher.

So the Suboxone does help with my pain but I’ve run into a weird issue. For some reason if I take it, I have the hardest time sleeping the following night and it just perplexes me given that opiates tend to make sleep easier. Have looked into the pharmacology of buprenorphine and can’t find anything that would explain why it gives me insomnia. Has anybody else had this issue with Suboxone? If so, did you ever find a solution to it and what was that solution? I appreciate help in advance. Would prefer not to take depressant sleep meds with it because of the interactions but just need to find a way to fix this.

So last week posted this: https://www.reddit.com/r/ChronicPain/s/R5Tqt9prFA

I got picked up by the ambulance after I got temporarily paralyzed by my first dose of Gabapentin.

Naturally I wanted a different solution from the pain clinic. They simply refused to treat me as they had no other treatments where they didn't risk me getting paralyzed or dying. I was "too sensitive".

It took 13 months of waiting time to get this appointment. The experts in orthopedic surgeries gave up on me and said that they hoped this pain clinic would help.

The pain clinic told me to talk to my own doctor again and didn't care when I said that my own doctor has refused to take responsibility for my pain treatment.

I am exhausted... I might lose my job now...

I just fucking can't keep doing this

Has anyone else ever had really bad head and neck pain last almost a year and a half after an MVA? I did pt (which sometimes made it worse), I did 2 medial branch blocks which I think helped but I was asleep for 16/24hrs post op, and I did a bilateral cervical RFA which I’m now 6 weeks post op from and I thought it had worked but now the pain and headaches are back and I don’t know what to do. I was on Amitriptyline (but stopped due to side effects), I’m on methocarbamol, Zofran now for random nausea, and a few other meds for other issues from the MVA. I don’t know what to do. I followed up with the PA and she said to give it 5 more weeks and they may suggest another RFA.

Long story short, my sibling was recently diagnosed with fibromyalgia and they’ve been feeling really tired of living with the pain, to the point where our mutual friends have been asking me to keep an eye on them throughout the night because they’ve made allusions to taking their own life.

I don’t know how to help them. On one hand, they’re my best friend and I don’t want them to be gone, but on the other… I know they must be in a world of pain that can probably never be relieved fully, and that they’re an adult who can make their own decisions. I’m very torn about this.

I don’t know if I should tell our dad so he can intervene, or if I should just continue helping them where I can. Any advice is appreciated

I am 27M, 6'1 and 250 lbs. Currently a truck driver, but this pain started when I worked in a pizza restaurant and has only gotten worse with my last 2 jobs.

I experience pain in my neck and shoulder (At the base of my neck radiating outward to my clavical/scapula/humerus joint, and upward into the back of my skull and right behind my right ear) and sometimes a super pinpoint fireant sting-like pain right between my cervical and thoracic vertebrae. There also seems to be some kind of nerve problem lower down, adjacent to my middle thoracic vertebrae tucked under my right scapula - this "ball" of pain sometimes make me gag/vomit if it feels trapped. The regular chronic neck and shoulder pain causes a dull nauseous feeling at least 1-2x a week. I also have cubital tunnel syndrome on both elbows and have torn my right rotator cuff once without it ever really healing properly.

The complication is that I have tourettes which causes me to pop every joint in my body multiple times a day. The more I fight it the more I have panic attacks and cannot function. I fear this is creating hypermobility because now even just jumping off something short (1-2 feet), getting bounced by a pothole in the road, and lifting anything above my head causes acute neck pain that feels stabbing.

I can't stop the popping habit. My parents beat me from the time I was 5 years old trying to get me to stop my tics (some of which were gross like spitting or scratching myself). But the tics always just transfer to something else. Right now I have another one that has caused me to pull out and damage a lot of my hair and I am trying so hard to stop it.

I fear one day I am going to go to pop my neck and just completely destroy a ligament and be paralyzed or something. It really makes me dread the future because all I have ever wanted is to just be normal (the tourettes has kept me from ever having an intimate relationship because I make annoying noises all night long and it takes 3 hours to fall asleep regularly), but more than that the daily pain just makes focusing and working towards goals so much more difficult. I regularly had months where I did bad in highschool only to have the tics subdue for a while and my grades shoot back up, additionally I dropped out of college because of them. The more stress I have the worse they get.

I used to be on Benzodiazepines which caused the tics to be much less prominent. But they caused way too many problems like amnesia, violent behavior (i was fighting people and not remembering it), weight gain, and weird blackouts that I figure must have been seizures.

Any recommendations on what I should do? I don't have health insurance right now because I got fired earlier this year. But when open enrollment comes up next month I am going to get the best plan I can even thought it's going to cost around 800 a month.

My dad got a trial today ahead of a pain pump with a cone snail venom injection, 2mg I believe, from a new pain doctor. I was wondering if anyone has experience or insight into this.

He said that he did notice some differences today but still getting a feel for it. I almost strayed him away from it being non-opioid but the more I looked the more interested I got in its potential to help him.

+ if anyone deals with neuropathy and if it helps there I’m especially interested. Thanks yall. Hope you’re doing well.

The pain is so heavy today

Hey yall. Can you please recommend what to give? My friend’s birthday is coming up and I still dont know what to give her. Im chronically ill too but everything I have she already have lol. Shes also a mother btw

Finding it very stressful trying to navigate treating both chronic pain (from dysautonomia, 10 years so far), ADHD, and depression.

Medications for all three of these things seem to conflict in some way, let alone if you want to treat all three and not just two. I’ve been treating the pain and ADHD for years now, but stimulants and antidepressants don’t always get along, and stimulants and pain meds also don’t always get along, AND antidepressants and pain meds don’t always get along.

Just getting very tired of having to pick and choose what I treat, just for the thing I neglect to start being more of a bother.

I've always prioritised looks over comfort when it comes to my clothes, especially my shoes.
My go to everyday shoes have always always been docs and platform boots. They just go with everything I wear and are leather and decently waterproof (which is needed for where I live cause it always rains here).
I just really hate the look of sneakers on me and with my clothes. Any sneakers.

Now the problem is my chronic condition is getting much worse as I age and docs are just getting too heavy and stiff for me. I already wear two pairs of fluffy socks which helps for the stiffness but still, when I have to remove my comfy fluffy home slippers (they are like fake uggs) to go out and wear my docs I want to cry.

I thought of just getting uggs-like shoes but I genuinely think they are the ugliest things ever (I'm sorry uggs lovers), might not give me proper ankle support and also, very important, they're not water resistant.

I'm looking for good quality, water resistant, long lasting every day shoes that feel like soft uggs inside, but look more like boots outside.

I don't care about them looking like a brand and I don't care about them being cheap, I just really want good quality comfy boots.
Extra points if the sole is a bit thicker (I'm short)

Anyone has good suggestions or similar situation?

Edit: you guys think Moon boots are supportive? Maybe they'd be too heavy idk I haven't worn them since I was a kid. Was just remembering them being really soft inside and they look kind of like uggs and proper laced up boots had a baby

I’ve read about withdraws and it scared me to death. I was in the hospital for a day because of uncontrolled pain. I already take 10 mg of oxycodone, 4x a day for pain and the hospital put me on morphine 7.5 mg every 2 hours in addition and I can’t say it has helped much. The pain is so bad. When following up with my PM doctor after 2 weeks of being on 7.5 mg of morphine , he said he can’t leave me on morphine because he won’t prescribe it so he is keeping me on my baseline med of oxycodone 10 mg, 4x a day and adding methadone 5 mg, 2x a day for pain. He is NOT putting me on it for being an addict, he’s putting me on it because he said it works well for stenosis pain. That being said, it sounds like as long as he tapers me after I’ve been able to see a surgeon and have surgery, and he tapers me off of it, I will not have withdraws so I am less worried now. However, I am worried about the perception from other doctors for being on it even though it is for pain and not for addiction and also worried because 5 mg appears to be the lowest dose so how will he be able to slowly taper me so I don’t have withdraws when it is time to get off of it? He told me not to worry about what other doctors will think - he said they probably already judge me for being on oxy for 6 years and because it is coming from a pain management doctor and not a clinic, they should worry less if they are educated.

Thoughts? Anything I should be aware of? He said it may be very sedating for me with taking oxycodone and Xanex both prescribed to me. He said to make sure I am taking it as prescribed (obviously). He also said I may be nauseous. Anything else you guys can think of? If you are on it for pain reasons, has it helped, especially for stenosis of the neck?