I was supposed to go out with my daughter tonight, she bought tickets to a screening of Rocky Horror Picture Show for us. But I just couldn't. I was still recovering from going out of town on Tuesday for a comedy show (4 hours in the car, walking bout half a mile to the venue and sitting for two hours= big ouchies and triggered a horrendous flare) and I just knew I was going to be miserable if I pushed myself. Also, the show was a standing room venue with the option to bring your own cushion if you needed to sit on the floor.

Y'all, if I sit on the floor, then I belong to the floor. It just isn't going to go well, and my body just locks up with pain. And Rocky Horror is a very interactive, high energy show. There was just no way I could do it.

So, I told my daughter that I was really, really sorry, but I couldn't go. And I really wanted to go. I was so afraid I was going to hurt her feelings, disappoint her.

And she just smiled and said, "Wanna order burgers and watch anime in bed with extra pillows?"

Absolutely. And that's exactly what we did and it was awesome. We had fun and I didn't have to push myself. I didn't have to feel guilty.

I said no, because my body said, "girl, don't test me. I will make you regret even putting shoes on."

I said no, and had a great night.

It's ok for us to say no.

Thanks for listening to my rambling, y'all are the best.

I have nerve pain and I take many meds for it, but whenever I have a flare nothing other than opioids work, I had the comfort of being able to take them before but no doctor will even agree anymore. I'm currently in the middle of a flareup and i just want to die, I fucking hate the system with all my life that's barely left

This is going to sound woo-woo or impossible, but I swear it's true. I have anesthesia dolorosa in my face. For years it felt like it was being burned and stabbed and all that good stuff.

I got a deep brain stimulator (DBS) implant in February, after 2 unsuccessful microvascular decompression brain surgeries prior for trigeminal neuralgia, that ended up causing the AD.

But in March, my DBS battery got infected with candida, and in April, my brain ledes got staph. I had to get emergency removal surgery and to say it was traumatic is putting it mildly. It was a really dark time for me and I tried to drown everything with medicine and marijuana.

That's when I started neuroplasticity talk therapy. Essentially because AD is a central nerve condition like a phantom limb almost, I had to teach my body that it was safe. This meant when I felt pain, I did things despite it or because of it that I used to fear, like walking. Slowly, incrementally. I used pendulating focus and meditation to get used to temperature on my face as I had the worst sensitivity to cold. I read the book "The Brain's Way of Healing" by Norman Doidge.

I write this because I'm trying to say there's hope. It's slow and a complete MFer and hard, but it's possible. It feels like science fiction but it really happened. It's not perfect, I still have some pain and some days are worse than others, but I overall feel like I got my life back.

For the last 3 days, I have averaged 2 hours of sleep in total. To say that my brain was goo was an understatement. Last night, the pain was at it's worse. I was all cried out, didn't think that was possible but there were no tears. All I did was rock and moaned.

The pain was insane. I tried to distract myself with dogs on YouTube. Tried to talk to others, but don't think I made too much sense.

Thankfully!!! Oh my, I dropped today around 9 a.m. I woke again at noon and then was gone again until 6 p.m. You all, I slept. I finally got sleep.

I still feel very rough. Like I got bowled over by a cement roller, but I finally got sleep. Now if only the pain would go away that would be great.

Here is hoping those that are craving sleep get some too and may our chronic pain just give us a bit of a break!

another day of not wanting to do all this again

Yes! U read the title correctly...becoz that is how my situation is...

Please take ur time to read & give me advice regarding my health condition...

I am 20F. Since my 11th grade annual exam leave, i am suffering from backpain.

I visited a top Ortho doc in my city, he sugguested me to do 3 physiotheraphy exercises and asked me to do Suryanamaskara daily. He also said the reason for pain was sitting in a wrong position while studying.

At that time my ability to sit continuously without pain was 1 hr.

A year later the time period slowly declined to 30 mins...So i went to him again , he changed only one exercise from those and said the same. (As he is one top ortho, the time period for one patient is just 2-4 mins, which i felt this is not going to work anymore)

I went to another Ortho Doc, he took X-ray. Said everything is completely normal...And asked my not to do any of those previous exercises , suggested another set of 3 exercises.

After 4-5 months , my ability to sit declined to 15 mins.

This time, i went to a neurologist, took a MRI scan (from brain to spain ig). Everything was completely normal.

So i went to a rheumatologist, he ruled out arthritis.

With zere hope , i went to a popular homeopathy doctor in another city. He promised to recover me within 3 months. 3 months became 4 but no improvement. I was fed up with those costly sugar balls...

Few months later, visited a Siddha oil manufacturer in my city, got that oil. Idk if it worked or it is my illusion, i felt better while applying it. But no improvement on my health.Only the short time relief while applying. But soon, tiny bumps and heat ball like stuff started coming on my back. so i left it.

Till 2026 mid i used frequently to go to nearby clinic and get neurobion injection...

Now for the past few months, i am not doing anything. No doctor visit, No tables, No injection , No Oil. Nothing.

Why becoz, my parents are no more ready to take me to any other doctor. Not anymore. They asked me to exist with this. 1) My dad is struggling financially . 2)They came to a conclusion that this is not going to better. Sometimes they tell me this pain is my illusion or this pain is just gas etc etc...

But My ability to sit has increased little bit. Not big difference, but minor improvement is there.

Anyways, this is not correct whatever i am doing...

idk what to do. I am unable to sit. I cant take rest as my mom is getting old, i have to do the household chores as well which is killing my back. I am messaging random doc on instagram. Watching random videos etc etc....idk what to do, idk how my future will be....i am hopeless

I have pain mainly in lower back (like the two round bones below), ending part of spine. If i sit for long hrs or do chores, my hip side parts will sharply pain, my full spine , lower back, sometimes even within butt will pain... I feel tired 24x7.

My knees are paining sooo much nowadays especially my left knee , i am unable to bend it...Also sometimes i get cracking sound both from my lower back (the two round bones) and my left knee.

And i get anemic if i roam in sunlight for long time.

Today i cleaned my bedroom and i am typing this with so much pain

Hey Ya’ll! I have chronic pain but this isn’t about me. I’m seeking advice for my boyfriend……

My boyfriend suffered a work injury that had caused his L4 and L5 discs to completely deteriorate to nothing, so it’s now bone on bone. He was getting ready to have surgery, the Dr said may or may not help replacing the discs… but before surgery my bf had to have a colonoscopy. Well colon cancer was found so the back surgery was put on the back burner. Cancer was removed and a cpl small spots on the back of his liver were found so he’s been doing immunotherapy.
So in the meantime he’s been suffering with debilitating back and nerve pain down his leg and his gait has shifted to the right side when he walks due to missing discs (left side is affected).

So I’m asking if anyone else has experienced this with missing discs and had surgery and if it helped?
He’s afraid to go through with the surgery if it won’t help and also he’s afraid if he’s cut open it’ll cause the cancer to come back and spread even more.

** **** **Any advice or experiences with this kind of back pain is greatly appreciated!

And I love this meme I saw on the B99 sub just now. I just thought that it would really fit in here, even if you haven't seen it. (You should. It's a really great distraction from tough times.)

When I lost my daughter stillborn, it was a real wake up call and showed me who is in my corner and not.

I realized I was raised my narcissistic parents and learned that as what love looks like. I looked for similar patterns in friendships and romantic relationships and it took losing my daughter to see that.

I walked away from most ALL my family and friends.

I’ve been doing therapy, healing and rewiring now my brain operates.

My people were not willing to research, do any learning or meet me anywhere.

It’s a bit lonely when something funny happens or something reminds me of them.

It took so much strength to walk away and I’m wondering if anyone has done similar?

Were you able to build a life you enjoy living?

I’m a 36F and I’ve been struggling with unexplained leg pain and exercise intolerance for years that has recently gotten much worse. I’m hoping to find someone who has experienced something similar, because I’m getting really frustrated with not having answers.

My biggest symptom is a deep burning/aching sensation in my legs that starts almost immediately when I’m physically active. Sometimes it takes less than 30 seconds of walking before the burning starts. Stairs, squatting, and kneeling are particularly difficult, and even activities that seem relatively easy can leave my legs feeling completely exhausted. Sometimes the pain also turns into a deep, throbbing ache that persists even after I’ve stopped moving and rested.

The frustrating part is that I WANT to be active. I used to run and attend Orangetheory classes regularly. Even back then, I noticed that despite consistently exercising, my endurance never seemed to improve the way it should have.

Despite increasing activity, my exercise tolerance hasn’t improved. Even five minutes on a stationary bike at the lowest resistance can leave my legs feeling like Jell-O.

I’ve also noticed that my recovery seems worse than it used to be. Recently, I attended a stretching/Pilates class, and the deep aching and burning became so intense that I was nearly in tears.
I’ve been through neurological testing and bloodwork for muscle disorders, most of which has been normal or inconclusive. I’m now seeing a vascular specialist to investigate whether there could be a circulatory component. But everything keeps coming back normal.

It’s becoming increasingly frustrating because I’m only 36, and I feel like my body is limiting me from doing things I genuinely enjoy. I don’t expect anyone here to diagnose me, but I’d love to hear from anyone who’s experienced something similar.
Has anyone dealt with immediate burning leg pain during activity, especially when exercise and conditioning don’t seem to improve it? Does your pain sometimes persist even after resting? Did you eventually figure out what was causing it?

I am just losing hope.

I had a appointment at pain management and we did the Battlefield Acupuncture today. I'm a 100% disabled Marine Veteran and Ive had multiple surgeries and implants. I've had my Left hip replaced, L5S1 fusion with titanium rods, pins and screws, Mesh Implant in my Stomach, Discectomy with a Titanium Mobi-C implant in my neck, 2 knee surgeries, Radicalopathy in my R. arm and R. leg, Dequervans surgery on my right wrist and have Osteopenia. This is relative because I can absolutely state this procedure is incredible and has reduced my pain, but what's most amazing is I have absolutely no neck pain and I HAVE NO HEADACHE. I live 3 hours from the VA in Manchester NH and I always have a terrible ice cream like headache after driving there and home behind my right eye, with a painful knot at the base of my skull and the skin tightening along the side of my head on the right side. After driving a total of 7 hours I am incapacitated when I get home. I have to take my pain medication, lay down in the dark and suffer for hours. I've been home 2 hours now and I have no headache or necknpain. None. To say I'm stunned is an understatement. I cannot say with certainty it's eliminated my other pain points, it does feel reduced. However it absolutely stopped the pain I get from my neck with the painful knot at the base of my skull and skin tightening that goes along the side of my head and causes that ice cream like headache behind my eye. My vision in that eye after driving normally is blurry and the pain is horrible and I am totally fine now. I would recommend to everyone to ask your Dr. if this is available and try it. It actually works and it's not a procedure that's terribly painful. I had 5 little asp needles ( you can see them in the picture, there tiny) in each ear. It was just a little prick, less painful than a shot. It took maybe 10 minutes total and the Dr. waited a few minutes between every 2 she put in to see how I felt. There supposed to stay in for 2 to 3 days and will come out on there own. If they start bothering me or It gets irritated I can just take them out. It's actually very simple and much less painful than I thought it would be. Please, please believe me that this is not some hokey or fake procedure. I have not had this much relief from a procedure ever. I've had nerves burned, all types of shots like Synvisc and cortisone, massage and water therapy and regular acupuncture. Some felt good, some gave minor relief but none eliminated pain. This did. Battlefield Acupuncture. Remember it, screenshot shot it to remember the name. I promise on everything I hold dear that this has stopped my neck pain. I believe it's reduced my other pain, but it's still achey so I can't swear to the efficacy even though I think it has. My neck pain is just not there and driving always exasperates it, always. If you're searching for something, anything to help please try this. In my opinion it's almost a godsend. I see so many posts of people that are desperate and have tried everything they could with no results. I found something and want to shout it out to the world to try this. I cannot swear it will help you, I can only testify to what it did for me and it absolutely ELIMINATED my neck pain from my disk replacement. I hope this can help people to find that one thing that can finally help them after trying everything else.

Hi yall,

Normally I’d refrain from posting, I’m a lurker, but I’m dying to know I’m not alone.

I’ve been dealing with my pain since the ripe age of adulthood. It’s been a little over 6 years since my spine turned hostile. A constant war of attrition. It wasn’t until my lowest point both mentally and physically that this started, I’d say about 2-3 years. I began walking with a cane and fell into near-complete isolation with luck on my side having 3 friends hold me up while I was without another support system.

It went on like that for a while, I spent so much time in the hospital I actually began to despise the very workers who were trying to help me. I started spacing out in a constant circle of thought, “everything hurts.” Even at work, I wasn’t able to do much and that had its own toxic effects. Later, I leave my very short career and embark on a new journey.

I joined college and ever since have noticed that my memory is simply shit. I knew a couple of years ago when my friend would repeat stories 3-5 times, but I used to be academically refined. I remember learning I wasn’t stupid and taking challenging courses and having no issue. Now I struggle in my classes. Test without notes?? Buddy, I’m fucked. I don’t even get nervous, I simply can’t remember. I’ve never felt so dumb.

I’d say it’s gotten slightly better, but I just want to think normally again. I’m okay if I never walk or run the same, I’m okay if I never sleep without waking, or even if I have to deal with these flair ups the rest of my life, but I absolutely cannot be without my ability to think, retain, and recall things…

Have any of you noticed memory retention issues or thinking in general? Is my CPU on constant overload and all my thought packages are just getting dropped??

Ok you take painkillers okay...

But..

but what if you didn't take painkillers, is that better for your body to suffer the pain or if you do take painkillers, is it just masking things?

Hope that made sense haha

I’m currently waiting for surgery, but after a year of pretty much non-stop chest pain following a climbing accident, I’m starting to wonder whether it’s unrealistic to ever expect to be completely pain-free.

My surgeon has described the operation as a bit of a “Hail Mary” essentially, given how much pain I’m in and the structural issues they’ve found, it’s worth giving it a shot, but there are no guarantees.

Part of me is wondering whether I need to start facing the possibility that this might be my life and learn to accept it. That’s a really difficult thought when you remember what life was like before all this.

I’m not even expecting a miracle anymore. I’d honestly be happy with a significant reduction in pain and got some quality of life back.

Has anyone else had severe, persistent pain for a long period and then improved significantly even after months or years? I’d really love to hear some positive stories.

Please consider signing my petition. Christina Applegate’s recent news of misdiagnosis shines an even brighter light of how women are treated in healthcare.

I just want to vent. I have a complex medical condition caused by a reaction to a medication, and doctors’ negligence made things worse. I’ve tried so many treatments for the chronic illness it caused, but nothing has worked. I don’t even want to talk about the illness itself anymore because I’m so sick of it. I’m sick of my body and this stupid illness.

At this point, pain management is my only option. I’m in severe pain, and it’s nerve pain. I’ve tried so many medications, but nothing has helped enough. They want me to try LDN, but that means I wouldn’t be able to use opioids for severe pain. Ketamine infusions are so expensive, and I don’t have that kind of money. Palliative care isn’t an option either because I don’t have anyone to advocate for me, and my insurance doesn’t cover it.

My caregiver is out of the country for three weeks, and honestly, I might end it.

i have a shunt going from my brain down my
neck under my
armpit and into my
ribs. the scar tissue is important for holding it in place, i think, plus i’d worry that any attempt to break it up might harm the tube. but i have severely irritated it somehow and the point where the tube goes over my collarbone has been a hot pulsing horrible mess of pain for weeks now. ibuprofen, ice, heat, and chiropractor helps momentarily but it’s causing all these other pains to crop up now as a result of the tension i am carrying :( any advice?

Switching from OxyContin ER to Morphine ER for insurance reasons. They called in a higher dose of the morphine ER to be comparable MME and I am on an immediate release medication for breakthrough pain in case of it not being enough or a good fit so I’m not left suffering while they call something in new. Anyone have luck on this medication or positive results? I don’t particularly want to be on OxyContin ER any longer so I’m glad for the change even if it doesn’t work exactly the same but I’m nervous GI wise as Morphine sometimes doesn’t agree with me and the nausea/vomiting can be intense and I’m hoping that’s not the case. Thank you!

It was something my specialist mentioned that they were considering offering at the pain clinic relatively soon and he asked if I was at all interested. I'm not really sure since from what I've read I'm not really sure it'd help with a connective tissue disorder.

It does seem relatively low risk but obviously being stabbed with a needle is never zero risk either. I was wondering if anyone around here had tried it or if there was more to it than I understand?

Im 29(f) for context. I’m tired of the meds. I’m tired of the pain. I’m tired of basically becoming agoraphobic due to fear of leaving the house and causing more pain. All I do is go to work and stay home and my husband is too sweet to admit being home with me all the time is affecting him. I’m so tired of my life revolving around pain. And I’m so tired of all the meds making me too drowsy to want to do anything other than play video games during my days off.

I have a wonderful pain dr that I’ve been working with for almost 4 years now. My current dose isn’t doing what it used to do? Sure we can bump me up an extra 5-10mg. You need a stronger opiate now? Sure which one do you want to try? Your barbiturate runs low at the end of every month bc you’re having to take more to control the pain? Sure we’ll prescribe an extra 60 pills per month and let me know if you need more.

He’s genuinely wonderful and keeps track of how I’m doing on my meds every 2 months that I see him. He’s the only dr who doesn’t make me feel like a drug seeking addict.

I had a nerve block years ago that confirmed the diagnosis of occipital neuralgia. I took zero pain meds, including even just Excedrin, for an entire 2 weeks. Unfortunately bc it was supposed to last close to 4 months I’m no longer approved to get them again.

I asked my pm dr about a nerve ablation a couple years ago. He said absolutely no since I’m so young and I have a life with a husband and step kids and a great career as a pediatric nurse so the risks of that procedure do not make it worth it to try since I can function right now and he says the procedure could make my pain worse especially if the nerves grow back wrong.

But I’m just surviving, not really living.

I’ve recently researched procedures that can have a more permanent affect to treat the pain such as radio frequency ablation, occipital nerve stimulation, occipital nerve decompression, and the last resort being a C2 ganglionectomy. I plan on running these by my pm dr to go over risks and benefits of each one when I see him in a couple weeks.

I’ve always wanted to be a mom, but all the meds I’m on don’t allow me to have a safe pregnancy. My husband would also love another child but sees what I go through and says if it’s never possible that’s perfectly fine too.

Has anyone with occipital neuralgia tried any of these procedures? What was your experience? Did it help your daily pain or were you worse off from it? Which kind of specialist do I see to discuss possibly moving forward with one of these procedures?

I have had chronic pain for 5 years, and I feel like my brain is just constantly worried about everything. It can be a small thing, and my brain treats it as a serious threat. My brain often worries that if I don’t control everything in my life, then there is a potential that worse pain will come. Like I used to be unorganized, slob, everything, and now I have gotten like significant OCD. I often have you know everything. I feel like if I don’t know everything we are doing on a certain day or know how to do something, my brain freaks out and I start to worry. It’s like my brain treats the unknown as a threat. It’s just so crazy how fast I have changed in a small amount of time.

The boom-bust pattern is so common: a good day, you do everything you couldn't do, then you're flattened for three days. Pacing means setting a baseline you can manage even on a bad day and sticking to it on good days too, then increasing slowly. It feels frustrating at first, but it usually gets you more done across the whole week.

Just venting. It is my whole body tonight. I'm in bed surrounded by pillows, covered in splints. Lucky don't often have a full body flare. Fibro, nerve damage and arthritis