r/ChronicPain

Hi,

I’m not really sure how to put this into words, but I’ve been feeling really overwhelmed lately.

I’ve been living with type 1 diabetes for about 35 years, and over time it’s come with complications. I’ve learned to live with it and manage things as best as I can.

But recently I was diagnosed with cancer in the lymphatic system, and it just feels like too much at once.

I’m currently going through treatment and not able to work. Some days I’m okay, but other days I feel completely drained — physically and mentally.

What’s hardest is not just one condition, but everything stacking on top of each other. It feels like my body never really gets a break.

I do have some support around me, which I’m really grateful for, but it still feels heavy sometimes.

I guess I just wanted to ask — how do you cope when your body is already dealing with so much, and then something new gets added on top of it?

Thank you for reading.

I just got home from my neurosurgeon consult. It went well. He doesn't want to do surgery due to risk of paralysis. He said "I would rather your doctor get your pain under control." My PCP/PM is thinking the same. She has changed my scripts to 60 Oxycontin 20mg and 90 10mg oxys IR. That's over $900 before insurance. Fortunately, being disabled, I have decent insurance. My PCP was able to get a PA for the Oxycontin 20mg. That brings it down to $289.72 + $5.00 for the oxycodone.

All my bills are paid this month and we have food, shelter, and utilities. I'm grateful to God for that.

Unfortunately $289.72 may as well be $1000 to me. Disability just doesn't pay that well. I am finally able to get my doctor to prescribe the Oxycontin ER, but the script is useless.

I'm kinda glad I don't have any family left. First I lost them to chronic pain, then they have passed on. This is one time I wish I had family to help me.

I'm grateful my surgery consult went well. If the surgery went well, then I am looking at a 30% decrease in pain. At least that's my neurosurgeon's high end estimate, of course it could be less. Also my age, 64, coupled with a lifetime of smoking certainly is not in my favor of the bones fusing correctly if at all.

I am depressed to say the least. I've got a few days to taper before I am out of my oxy 15s.

I'm just frustrated and needed to vent. I'll be bed bound for at least a month. Unfortunately there's not a less expensive option my doctor will prescribe. I'm allergic to morphine. Xtampa is over $400.

May God bless and guide this wonderful community. You guys and gals are kind, caring, and compassionate. I appreciate you and love you. Have an awesome pain free day.

Respectfully,

Jace

I feel like we don’t get enough of them so I thought I’d share. I have pudendal neuralgia. It’s AWFUL. My life has been flipped upside down. Anyway, one of the things that has slowly been healing me is Gabapentin. I thank God for Gabapentin. You hear all these scary stories about Gaba but nope luckily for me, I’ve had no problems. I’m on 1800 a day. No drowsiness (except for like the first day I up my dose), no crazy brain fog (I get a little if I don’t eat), no weight gain, no constipation.

It’s helped manage my pain and it helped stop my crazy central sensitization. I was having full body spasms and electric shocks. They were awful.

For those thinking of trying it, ya just gotta experiment. You will hear more bad stories online than good.

It is becoming increasingly difficult for me and I am getting severe anxiety over it now too because I have to plan my life around showering. :( I used to shower as soon as I woke up and then quickly before bed. Now I have no energy I have to force myself to do so. It’s awful.

I don't usually post but I need someone who understands. I have Amplified Musculoskeletal Pain Syndrome and it does cause some hindrances in my life, it even caused me to lose my job since I live in a small town where stuff like this isn't understood. I get chronic illness from my mother, she's got Fibromyalgia and does everything in the house despite me and my siblings trying to help. The only real problem is that she's been pushing through it her entire life, even with 7 kids and a husband who works nightshifts. I understand her job is hard and I'm relieved she's getting treatment but I have a hard time conveying my limitations with her when she pushes through everything.

I was diagnosed at 16 with AMPS and IBS after years of being told I was giving excuses. I'm doing my best but I don't know how to convey my chronic pain limitations to my mom without sounding like a bum. I just want her to understand that my limitations are different than hers. I'm sorry if this all sounds selfish but I just need someone who understands. Sorry for the wall of text.

shit post but i just don’t understand how im supposed to even exist like this. i’m literally just laying in bed crying right now at fucking like 1 am bc my back hurts so bad for no reason and there’s nothing i can’t do about it. laying on the heat pad isn’t doing shit and i have school in a couple hours.

so how. how do i do it how do i just live like this for however long because we don’t even know if this doctor is right bc i don’t really think he is?

fyi im 15

basically i have constant back pain and leg weakness and non constant joint pain (and they all started at different times with the back pain starting the earliest which was like 2 years ago when i was 13) the rheumatologist i saw a couple weeks ago said its caused from laying around too much and not doing like any sports or anything (which doesnt make any sense bc i know a lot of people who lay around like i do and no one has anything like this) and bc apparently i hyperextend my knees and have flater feet.

i think he like actually diagnosed me with AMPS (amplified muscleskelotol pain syndrome) but like to me that doesn’t make sense. yes not moving around can cause things to become like stiff but why would it cause all of these things instead of just like one area?

bro literally said that i just need to slowly start exercising everyday like doing 5 mins of running for one week and then 10 and blah blah blah and that if im still having pain after exercising everyday for 30 minutes for a month straight then i can like come back. i just got a treadmill the other day finally which is like $300

that’s like the end of the doctor influence bc i haven’t seen really anybody bc we just don’t have the money and it takes a lot of time to figure out where to even go.

i just don’t get how to live like this for yk however long (if the doctor guy actually is right then like only like 2 months hopefully) but still like i’m 15 years old. i want to walk and bike around my neighborhood with my friends without like dying in the process. i just want to live life not in pain like everyone else my age does (probably) and yk it’s not like this is genetic where my family has had the same stuff (my mom possibly has MS or fibromyalgia, my dad has had several work related injuries and had to do like pt and stuff and PKD)

the people in my life believe me at least but my stupid sister still thinks i’m being dramatic and lying about how bad it is (she’s like 13 ik but it still hurts yk)

idek anymore i need to try and sleep sorry for my rambling

Does anyone have any crazy tales from their pharmacy they would like to share?

At one point, I was getting my meds delivered to me and I was waiting on a large number of an opioid.

Time passed and I was getting anxious.

I finally called the pharmacy, who called the delivery guy, and on the phone he confirmed that he left it in my mailbox.

He even claimed he had a signature (that looked nothing like mine and was just a scribble. )

Problem is: I DON’T HAVE A MAILBOX

And everyone was freaking out cuz what if someone checked their mailbox and found my meds, but instead of returning them, they either use them or sell them.

And we weren’t even sure if we confronted the mailbox owner if they would be honest that they had them.

I don’t know what happened but about 2 hours later, the owner of the pharmacy (who was a good friend by then) was at my door apologizing profusely with my script.

It’s ok, Accidents happen. But they should never happen twice. I never saw that delivery driver again.

Another time, I had an old opiods prescription sitting banked at my pharmacy and an (ex) friend pulled it for me.

All the while I was actually hospitalized so there was no way it could have been my partner and I (the only ones authorized to give my script to, and he was obviously with me all day)

We were able to obviously prove it wasn’t either any of us. Again, the signature was wonky.

That employee got fired.

My Ankylosing Spondylitis is flaring up so bad. I’m on steroids, Norcos, etc and still struggling with pain. I can’t walk more than maybe 2 minutes without feeling pain and I’m limping around a lot of the time. I try to hide my limp as much as I can, though.

Getting up and down out of chairs etc hurts.

Stairs are impossible without my cane or gripping on hard to a railing, too.

It’s also difficult to walk, get up/down, etc with the stiffness and weakness I have right now.

I only say weakness because I’ve basically been either sick or my UC and/or AS has been flaring since November... So, I weigh 105lbs at 5’7 currently and I’m exhausted.

I bought a cane after my PT recommended it, and I’ve used it a few times. It really helps with pain, and I’m able to walk much more. I don’t need to grab onto walls either.

I’m just feeling anxious to use it in public. Every time I have so far, people have been weird.

EXAMPLE: Went to the dispo and the lady offered me a chair and was being overly nice and apologized **incessantly** because I “must not have seen the handicap parking and button to open the door”.

I didn’t see the button, which is my fault, not hers! And at that point in time, I hadn’t gotten my handicap placard yet.

I’ve also had men be super creepy and white knighty… it makes me very uncomfortable to get this attention.

Then other people giving me looks/staring as if it’s unheard of for a 26 year old to be disabled. I hate to call myself disabled… but i’m trying to be blunt.

Anyway, I don’t know what to do. I want to use my cane because it’s way easier getting around and I’m limited right now without it… but people treat me weirdly in public and I feel judged also. And my biggest thing is worrying I seem like a faker 😭😭😭

I’ll realistically need this cane until I can get my joints injected and get back on my infusions.

I also don’t know how to talk to certain friends about this.

TLDR: I need a cane for right now realistically. People treat me weirdly when they see me with it. How do I handle this? What do I do? Also, how do I tell friends?… thank you!!

I have a rare bone disease that was never treated as a child. I begged my family for relief but they told me I was being dramatic. That caused irreparable damage to my bones. Because of that there are no specialists that can handle my case. I am also autistic, and struggled in school leading me to drop out at senior year after 10+ years of failing everything. At 18 my family started threatening me with being kicked out. Out of fear of losing what little I had left, I started an onlyfans. My Instagram account was blowing up and I felt that was my only chance to be seen as worthy and independent. I posted bikini pictures and pin up photos. I saved up and have been using the savings from that to survive for the past 2 years living in my mother’s house.

I always dreamed of being a teacher. I raised my 2 little siblings from birth to 10 years old. The only skill I’ve ever been good at is handling kids. I saw a video of a lady making low stimulation children’s content online just now and it made me think “oh my gosh! I would be perfect at that!” But then I realized, my social media is attached to my face.

Not only can I not get out of bed most of my day because of debilitating pain that doctors refuse to treat, but now I’ve ruined my social reputation to be safe around kids. I’m so ashamed and angry and sad.

Hi friends, I've been in chronic pain most of my life and I am desperate for help. For the last year ive been seeing Penn medicine pain management and they have nothing left for me to try and won't give me regular pain meds. I am DESPERATE for any kind of pain relief. Does anyone have any ideas for me? Anything over the counter? Or even a recommendation for a pain management doctor that's actually helpful, I'm in PA but more than willing to travel and pay out of pocket as needed. I'll try anything, I just need help so bad. I've been doing this since I was 13 and I'm 30 now. I've been in a flare since July that won't go away so I'm thinking this is just my new normal now and that is unbearable.

Hi everyone. It was recently my 1 year pain anniversary, and I wanted to share my story.

A little over 1 year ago, I was playing a video game. Deadlock, to be specific. I don't remember if we were doing bad or good, but I guess I was clenching my teeth, which is a very common habit I have. All of a sudden, close to the end of the game, there was a very loud cracking noise and lots of pain. I thought I broke my tooth or something.

I let the weekend finish and went to the medi-clinic on Monday. They said it was inflammation and gave me Naproxen. I took it twice a day as prescribed for months, and nothing changed. I started physio every week shortly after. I do massage, dry needling, and got the magical night guard. Nothing was changing. I did get diagnosed with TMJ myalgia. The diagnosis didn't help. I went through months of not sleeping. I'm sure lots of you understand the pain of getting a tiny bit of sleep and then wandering around for hours because the pain won't let your body sleep.

Finally, I found a family doctor and convinced her to give me something, anything at that point, that would help. I started Amitriptiline. I finally slept. It was amazing. After months of not sleeping, I felt amazing. Still in pain, but as amazing as you can feel. It came at the cost of worse eye sight, extreme dry mouth and eyes, and not being able to wake up in the morning, but I was happy because I finally slept.

One of the medi-clinic doctors decided it was time for an X-ray. The x-ray came back quickly and told me that I had arthritis. I did some research and wasn't convinced. I got one of the doctors to give me a referral for an MRI.

During this time, I started considering changing my job because I couldn't wake up. I was a substitute teacher, and the demands were high for waking up for school time and talking all day. I couldn't do it anymore. I left my dream of one day getting the teaching contract I so desperately wanted and now have a job in finance. I'm able to only work 6 hour days with a late start time and almost no talking. It did help, but at a high emotional cost.

I was still living at about an 8 on my pain scale. I had to lay on the floor some days at work to get through the worst of it, but they are understanding. I decided to try botox, which my doctor wouldn't write a prescription for it, so it's very expensive, but it helps.

Suddenly, I started having severe stomach pain and issues. It turns out I couldn't stay on Naproxen anymore. They switched me to misoprostol-diclofenac. It was okay for a while, but I had to stop that eventually because of stomach issues. I continued the cycle of minor relief for a couple of weeks during botox being strong and then severe level 8 pain the rest of the time.

I was recommended to a free online therapy where I live that is supposed to help people with chronic pain. I did it because I'm willing to try anything. It had some good stuff in it. Nothing crazy, but it did help hearing other people's stories. I was really struggling with not belonging in a chronic pain support place. I felt like I had done this to myself. I kept all my stress in by clenching, and there were people who had cancer or horrible accidents who deserved help more than I did. I sometimes still feel that way, but I'm working on it.

I finally got in for an MRI. It told us basically nothing. my alignment was slightly off, but I didn't have arthritis which I didn't think I did. It doesn't run in the family, and I'm only 28. I decided I needed something more.

I begged my doctor for something else. Something to help with the daytime pain. I finally started carbamazepine. As I'm sure many of you know, all medication comes with a price. The price of this was my security with birth control. Since the pill won't work for me anymore, which was something my doctor failed to tell me. I am now waiting for an IUD. I think the carbamazepine is working well because I feel at about a 5 on a daily basis now, which is huge.

Well, that leads us to now. I'm managing my days better. I'm still feeling drugged out of my mind every morning. I'm still waiting on an IUD I don't really want, but I'm managing. I'm living my life semi normally to how I was before but with more importance on routine. And of course a mainly soft food diet.

But tonight, my sister asked me if I thought it was psychosomatic. I know it's not the same as being told it's all in your head, but it hurt so bad. I felt like I was punched in the stomach. I have a problem that no one can see an answer too. What if it is all in my head? That's my biggest fear. I know my pain is really but what if I'm causing all of it?

If you made it here, thank you. I just wanted to share because I feel so alone. No one understands being in pain 24/7 except for people who have experienced it. Thank you for being here for me, and just know that you're not alone in your pain.

I have Ehlars Danlos and I am being treated by my primary but out of nowhere she said she will no longer be treating anyone for pain with opioids due to pharmacy pushback and that she will only be sending those patients a 2 week refill and then they need to see a PM doctor. This is crazy to get cut off like this. I can't find a PM doctor in IL anywhere that isn't just a "steroid injection only" doctor. Those have never worked for me ever. How do I even find a compassionate doctor in IL that will continue my care? I take oxycodone 20mg 2x dialy and it works perfectly for me. Man over the years it has been impossible to find treatment. My primary finally agreed and then boom took it away. This is putting me in a very difficult spot. Every office I have spoken to is non medication treatment for the most part. I know how to ask as well for "continued care" as soon as they hear that it's like bam this office only does procedures. I am super lost and stressed out now.

I'm looking for some recommendations for pillows. I've had a shredded memory foam pillow for a while now, but it feels like no matter how much I putz with it, it isn't supporting my neck well enough.

I have a degenerative disorder that messes with my spine and joints (also just diagnosed with fibromyalgia), so getting and staying comfy in bed can be tricky. If I can get literally *any* relief from sleeping instead of waking up hardly able to move, that'd be a big win!

What works best for you?

(ps I've been putting a pillow between my knees which has helped with hip pain, so I'm hopeful that a better, supportive pillow could do the same for my neck/shoulders/back)

Yes yes I know you're not supposed to take expired medications, but im not going to be getting new muscle relaxants for probably a few weeks, so I gotta make due with what I have, which is cyclobenzaprine that expired on 06/04/2025 (MM/DD/YYYY). Will it still sufficiently relax my muscles?

Has anyone had success with it?

If not, which muscle relaxers do you prefer? Lots of herniated back stuff, sciatic, and a lot of hip flexor pain which feels like straight muscle

I haven't posted in a while. Last night I had a really rough time falling asleep even with all of my pain and sleep meds. I meet with a surgeon on Tuesday to get a tumor the size of a lemon removed from my left thyroid.

Instead of panicking because I have a 12+ hour work day the next day, I thought about everyone in this group. I just tried to relax and focused on sending positive vibes to everyone in the group. As I experienced my pain, I imagined it was getting worse because I was taking some of your pain away.

Suddenly, my pain eased, and I was able to fall asleep. I hope someone in this group got some relief also. It was an amazing experience. I actually giggled a little bit from it.

Anyways. Just thinking of everyone. Love to you all.

I’ve been taking 10 mg of baclofen for about 3 months. My prescribed dose is higher, but I stick to the minimum because I don’t like taking medications—though my pain keeps me up at night. I stopped it two days ago after reading about potential kidney side effects. Since yesterday, I’ve been feeling dizzy, confused, and feverish, and my pain has gotten worse.

Has anyone successfully tapered off baclofen, or taken it long-term without side effects?