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.

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

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.

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.)

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 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.

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’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.

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?

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.

I’m five years in with CRPS. I like most of us, I feel super lost and like I’m just not doing enough for my family. I started a page on a few social media platforms to capture some moments of me trying to live normally with and for my family, and as a reminder to myself that not every moment is bad.

I haven’t posted too much about my condition because I don’t wanna bum people out, but I feel more and more like it’s important for me to capture some of these experiences.

For example, I’m starting peptides. I tried KPV last month, and I saw no change at all. This month I’m on a wolverine stack.

I’m desperate to rejoin my life because it’s pretty amazing. I just don’t know how long it will wait for me- so I need to Get Well Soon. Maybe one of those cards would help! 🃏

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

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?

cw: for unsettling art about ed/has vomiting/and body horror.

i am usually not THIS level of repeated talking annoying showing a specific art i make this much, but i've been super mega frustrated and i feel like my brain is eating away cuz i'm constantly hungry and i just want to scream forever and always. i just can't find the words to put into place. Or maybe i'm losing them because i so hungry xD. i feel maybe i'm bein too edgy and otherwise overdramatic. there are lots of other stuff i wanna say or scream, but i'm too scared and anxious right now, so maybe once topic at a time? :O

i made this comic yesteday literally because i couldnt stop thinking about just getting ANYTHING in my stomach. i am already seeking treatment and have already talk to my primary doctor a while ago, who just dismiss me again and again quite honestly. but it would be rude to talk back. am working trying to get connected to a better equipped professional, but honestly its not really accessible and just making it even harder. i've done so much medical tests since and i jsut don't know what to do cuz either i doing something wrong or im not getting the actual care i need. i have been largely surviving on nutrient powders, but i have a history of chronic anemia/nutritional defficiency and malnorushment.

it doesn't help that i am overweight as a result of basically just eating plain bread/milk/crackers/eggs over and over again since i was tiny and the cocktail of medications i take for other things, and then just being dismissed because of that, since apparently u can't be not skinny and have an ed for some people. i wish to understand but i struggle, but i wish to! i don't mean anger. i've had months where i could eat larger range of food, but i think it gets worse when im struggling with more stuff. can't even eat RAMEN noodle cup without only puting some of the seasoning cuz ill vomit if its too spicy or otherwise.

i finally manage to drink water since the first time since i last ate. but i still can't eat anything soild and i last had an plain boiled egg meal over a day ago. i'm terrified just thinking baout eating. i barely even eat plain microwave bread now which i thought would be easy to eat forever. thank you for letting me being rahhh and annoyin xD. it feels like everytime i post this somewhere to share this hunger. i STILL haven't eaten since the past place i posted it in. cuz i can't get the words out. all i can think is i am so hungry and draw the pain away. it's been like this forever but i'm just at a point where things got much worse than usual, and all ican do now is just suffer endlessly.

I am nervous and idk what to do cuz i just want to be able to swallow anything and not have it come up so agresively/ or just general stop retching even near ANYfood, even not scentful. and just the anxiety of retchinng and vomiting just dis courages me. is my relationship with food permanently destroyed? it's been like this since i was small but it's been like this for so long, is there any other way or is it like this forever? will i ever be able to go out to a restaurant with friends and not just hurl stuff or hide eating alone in shame because all i can stomach is plain bread and milk. but now i can't even eat bread. :'D sigh...

I had a nerve ablation and then I fell backwards when I was leaving the therapy pool. I feel gutted because all the function I gained is now just gone. I'm starting to think I'm not meant to get better. I just can't seem to ever catch a break and I desperately need one.

I (31F) am really struggling. I have been suffering with chronic back and hip pain since 2020. I have tried everything you can think of, even hypnosis for pain. Yes, I am that desperate.

I am currently on 150mg dose of tramadol a day. I have told multiple times to multiple GPs that this dose is not sufficient and that I can barely do my daily household chores and struggle to work even part time.

I also have no pain relief for breakthrough pain even though I have asked multiple times for this.

I am lost at what to do. The last GP I talked to said that I was already on a lot of medication ( I am also on high dose pregabalin for neuropathic pain) and for me to just keep taking it and resting. Apparently I am too young to be on all these meds

I am not sure how to communicate with my GPs. I feel dismissed all the time. I have started a complaints procedure due to also other issues with the practice but I am not sure what I can do.

How can I be heard? I am struggling every day.

Hi pm pt who has been on opioids for almost 20 years at this point. I was very sad my physician died and cried so hard when I went to my appointment and found out he passed last month. I really was so shocked that I didn’t think about the long term effects At the time of the appointment, I was told the practice would continue and that I could just see his partner. I got my meds filled that day and was scheduled for my appointment in October. Yesterday when I showed up for my appointment, there was a sign on the door stating the office was closed. That’s it Nothing else. Now I’m heading into the weekend and will run out of not only my opioids, but my gabapentin and muscle relaxers.I don’t want to contact multiple pain management practices and ask are you taking patients and do prescribe opioids? Sounds like doctor shopping. But I don’t want to waste my time going to different clinics only to find out they don’t prescribe opioid pain meds. That happened to my daughter and it was very frustrating. Has anyone here been in my shoes? Can you give me advice on transitioning my care and what can I do today? I am so scared that I’m going to make a mistake and end up in pain for the foreseeable future.

I've been dealing with chronic pain on my legs for 10 years, which gets worse with the cold. The nutritionist already confirmed that there's nothing wrong diet-wise. I was told multiple times by regular people and professionals alike that I need to exercise, yet with the months I've been trying to exercise and/or go on walks, my legs had just been getting worse, and everyone assumes I just did too little or gave up too fast. I have no idea what to do anymore and I feel so useless.

I live in New England. Impossible. I am at the point where nothing else can be done. My entire lumbar spine and cervical spine are compromised with fusions and kyphoplasties. My C5-7 fusion is unstable and I’m having a C3-5 fusion in 6 weeks. Thoracic spine is a mess. Pain is unbearable. My Pain Doctor threw more Gabapentin at me, wants me to try Journavx, (useless) again, and increased Butrans patch to every 5 days, which I know will get tossed out by insurance. I’m so very tired of fighting. I’m willing to move to another state. Thanks so much for your help