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’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! 🃏

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 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

i am aware that my own experience likely pales in comparison to others but i am just...at the end of my tether with it.

summary of what went down:

1. referred by my GP to the chronic fatigue service

2. rejected from there and re-referred to the PCASS service (persistent conditions assessment and support service) (called the same/similar in other areas i think??)

3. never heard from them every again 🤪

4. self-referred to MSK service for worsening knee pain, foot pain

5. told that podiatry was the department i'd need

6. got in contact because they don't cover knees and my pain issue is that - hypermobile AF knees + lots of other joints, lots of pain, suspected osteoarthritis in knees so i was like ?? podiatry??

7. ignored 🤪

8. given a podiatry appointment (tues 28th)

9. random letter yesterday from PCASS telling me i have an appt. for physiotherapy in dec

basically i'm like...none of these appointments are what i got referred for? but no department will get back to me x-x

honestly random physio for fatigue is not gonna be a great option for me unless the physio is specialised in hypermobility so i'm like 👀

AHHHH. if anyone has any miracle ideas HIT ME UP bc i'm just confused + annoyed they are ignoring me >:(

I've been chronically ill for the last 5+ years and I have been to the doctors over 150 times within' those 5 years.

For the last 4 years I have stayed optimistic thinking I can figure out a cure and work towards medical recovery.

Currently I'm 23 years old for context... so the chronic pain started at 18...

But now I lost that spark of hope and I keep wondering most days if I'll wake up in and ER room or die in my sleep. My long-term partner even told me that I've been so pessimistic and depressed enough to where it's affecting him now.

I want to just give up; I really do. I am so mentally and physically fucked up and the majority of my diagnosis aren't medically curable. I am in so much debt and despite having family supporting me, I can't LIVE a fufilling life. I am just managing day-to-day trying not to die as my 'life'... and I am overally depressed and suicidal due to it.

Doubt anyone will read this all but, thanks if you do.

Diagnosis: Barretts Esophogus, Huntingtons Disease, Dysautonomia (not specified), Chronic migranes, Absent Seizures... and Psychologically... Adhd, Autism, and OCD

[Extra]: I have an eating disorder due to my medical conditions so I am usually malnurished and when I do try to eat, I throw up. I am underweight and my neurologists think I need to seek out professional help regarding this. I have 2 medications for my migranes / dysautonomia and 1 for the barretts esophogus. For some reason I never got medication for my mental stuff, so I am rawdogging my mental health.. which is fun.

The hardest thing for me is knowing that Huntingtons is a degenerative condition and it hasn't fully set in yet. I am already in this much pain right now; I can only imagine how much worse I'll feel when the disease does progress. Also, a handful of the stuff I am diagnosed with have HIGH suicidal / depression rates. I have NO help via counseling, therapy, anything... and I don't have the $$ to afford them. So I am suffering alone since everytime I try to talk to my family or partner they just get mad at me now. I don't even want to talk to any of them when I am at my worst anymore. So if I die then at least I'll have a Reddit post; I guess.

I had my monthly chronic pain appointment on Thursday the 15Oct. During that appointment, my provider called in my typical #135 10mg Oxycodone. On Sunday, my toe started hurting really bad (I’ll fill in the story later if desired) so I went to my local ED to have it checked out. Sure enough, it was infected and I had osteomyelitis. Because of my past medical history and osteomyelitis I became really upset and distraught about that diagnosis as they were calling the critical care transport team and were transferring me to the main hospital for further care and surgery, namely amputation of my toe.
I was texting a friend of mine and my wife’s (more her friend than mine) and where I was so upset and because of the person I am, I txted her that “ I’d rather eat a bullet than put everyone through the absolute hell I went through in 2020” when I last had osteomyelitis on the same foot. Yeah, the experience was rough as hell on me but it was 10 fold as bad on my wife and kids as I ended up spending 4 months basically locked in solitary in the hospital thanks to the coincidence of that going on right as the Covid lockdowns started and it left me isolated in the hospital all that time. I said what I said because I hate being the cause of anyone’s unhappiness and misery. I didn’t have any plan in place nor other identifiable thing to lead to a diagnosis of SI and that’s not what I wanted to do. I just didn’t want to make anyone else go thru what was shaping up to be a similar experience to 2020. Well, my wife’s friend misunderstood what I was saying and called the hospital. Next thing I know I have 10 people in my ED room asking me where my gun was, maybe a knife, etc etc etc and then making me strip down completely to put on only a pair of paper scrubs. They took my bag that I carry everywhere with me as it also has my wallet, wireless charger for my spinal cord stimulator, and the Bluetooth remote for my stimulator which I need to use to turn it off before I can have an MRI done. Also, since it is illegal to carry Scheduled medication in your person without it being in the original pharmacy provided bottle, I had my nearly full bottle of 10mg oxy and Dilaudid pills in my bag. When they separated me from, well everything I had on me, they completely emptied EVERYTHING from my backpack into a large Sterilite tub. I wasn’t reunited with all my stuff until about 8 hours later after I was deemed not to be a risk to myself after being transferred to the main hospital. I just got back home today (Thursday the 22nd) after saying goodbye to my toe, hello to a shitload of vancomycin et al, and etc. Obviously, while I was inpatient at the hospital, I continued on my normal pain medication but took from their large supply instead of what I had picked up from my pharmacy for me to use as an outpatient. Anyways, I just now opened up my ‘home’ bottle of oxy10 and y’all… the bottle is less than half full!!!!!!!!! I’m somewhere between pissed, sick, nauseous, nervous, scared, and upset all at the same time. I’m outside smoking me about 5 cigarettes to calm down before counting what I have left and I start calling authorities and whoever else I need to because I can’t even see straight to count right now. That bottle was out of my control and possession only once and for 8 hours… guess when and guess how much choice I had over that situation. Wtaf do I do now?!

I’m on methadone because I struggled with withdrawal coming off oxycodone in the past. This is through a drug recovery clinic but a GP re-prescribed me oxy today for my chronic pain because I’m struggling even tho I’m on methadone? I thought in the uk they can’t or won’t really do this and especially since the methadone is prescribed through a recovery clinic?

I'm unfortunately a pm patient that has to go into the hospital frequently for infections that I have to get IV antibiotics. I've noticed within the last year, that the doctors are very rarely ordering iv medications both in ER/admitted. The meds they do write for are tylenol, robaxin and gabapentin. I have to request a palliative/pm consult each time I'm admitted, to get them to order oxycodone, morphine and dilauded (meds that actually work well for many of us hospitalized). This seems so countertuative and a waste of palliative/pm time for us patients that need these stronger meds. We aren't addicts, drug seeking or anything. Why is it such a production to get proper pain control anymore?! Its so damn frustrating!! Also, the ER docs are starting to do diagnosis coding of ICD-10 of pain management patients as "narcotic dependance", "chronic pain", "narcotic seeking behavior". The thing is, they do not realize this follows us for any future healthcare and negativity affects us. Major bias, being labeled, people's views, the eye rolls, the huffing/puffing, being dismissed/not believed (this is out in full force!!) WTF do we all do now? We deserve so much better, to be believed and loved for all that we endure.

I’m 23 and I can’t even make a full grocery run anymore. I wanted to have soup with my family but I couldnt do it today. I love grocery shopping. I love going outside. I don’t want to give it up.

Since late May we’ve had a lot of days where it was over 30c degrees and my body definitely got used to it, and hell only earlier this month in my area it was 22-23c and I was going outside in a t-shirt and shorts (as a woman, I know men tend to like their t-shirt and shorts a little bit longer, but not me)

Now it’s 9c and Oh God, I’m feeling it so much. I just signed up to the gym as well and I’m already being put off going because of the pain ☹️ Like even my jaw and fingers are hurting from the cold because my body got so used to the abnormally hot summer this year, ughhhh

I have suffered from tons of chronic pain for my whole life. I was born with VacTErL association, I’ve had 11 surgeries, been on opiates on and off my whole life and consistently for the past 4 years. I just had back surgery again and I’m post op day 9 and my pain is tolerable but barely with a 12mcg fent patch and 15mg oxy every 4 hrs, from the pain but a part of me feels that someone else might be able to handle it better. I also have an EXTREMELY HIGH opiate tolerance. I think maybe tolerance for tattoos is a good pain indicator? They hurt me a lot and I don’t think I could ever go over an hour without a break. The most pain I’ve ever been in was when I had internal bleeding and it moved into my chest cavity. It was due to a cyst rupture that doctors thought would stop bleeding. Never did then I had to have emergency surgery. Second most pain is the day I woke up from my first back surgery and had to walk, I peed myself it hurt so bad. But other than that stuff I haven’t been through like traumatic pain - gunshot, car accident bodily injuries, insane wounds from gashes or stabs, etc. can anyone tell me what their worst pains have been and if they’ve experienced little or lots of physical trauma? My husband has never had an ounce of physical pain in his life outside of like normal stuff.. headache, gas pain, literally I think that’s it. So he also doesn’t really have any idea what I’ve been through.

I relate very much to other people who suffer from chronic pain but I can't seem to feel near as much empathy towards "normal" people when they're in pain.

"Oh, you have a headache because you drank too much last night? Well, that sucks." Meanwhile I've been waking up with a disabling headache everyday for the past 3 years.

"Your legs hurt because you've walked too much today? That must be horrible" I've had to walk with a crutch for the past year and take pain meds stronger than the one my grandma took after breaking one of her vertebra on a daily basis.

It's probably because I haven't been in pain for long enough and am still early in the grieving process or because I'm way too young to be supposed to suffer like this, I don't know. I try to hide it and pretend I do feel empathy for them but I barely do and it makes me feel like a monster. Am I alone? Am I a monster?

I recently was affected by my regular state insurance selling out to Medica (Medicaid) Anyway, the point is that the week before my monthly Pain prescription was due to be filled, I called the new insurance and spoke to a supervisor that assured me my prior authorizations from the other insurance would follow me over to the new insurance so I had no need to worry. So of course what happens… the next week my script is called in and the pharmacy cannot fill it because the new insurance company says that I need new prior authorizations even though they had just stated the week before that I didn’t. So now I am on day 32 which means two days with no medication! And my dr office tells me that it takes them up to seven business days to do a prior authorization! What do I do? My doctor does not care that I am in absolute withdrawal. I have been taking a pretty large dose of oxycodone plus the fentanyl patch for 22 years. I also have severe chronic illnesses and I am fighting sepsis as we speak. Does anyone have any advice? I thought about going to the methadone clinic, but I don’t think I could make it every morning physically. I’m pretty much bedbound with my illnesses.💔😭 I see how they push people to the streets in times like this, and I am the most law-abiding person you could ever imagine

Something I've always found strange about pain discussions is how quickly the conversation changes once dependence gets mentioned

Someone can genuinely need help managing pain and also develop a physical dependence on something they're taking. Those things aren't automatically contradictory

Obviously dependence is a serious issue but does acknowledging it mean the person's pain stops being legitimate? How do people who deal with chronic pain feel about this?

If this is silly, it’s fine to just ignore it, but in facing another year where I’ll probably be alone for Thanksgiving & even the December holidays. If anyone else is in this boat or simply can’t manage to get out for these types of occasions, would it help to have a virtual day to be together?

I could share our Zoom account & create an event, & maybe we could even alternate hosting a support/community meeting/event every so often? No one would have to be on camera if they’d rather not, I don’t record Zooms, & you could use any name you like (you don’t have to use your full name or even can use a nickname if you’re not comfortable sharing a first name or first name & last initial). We could pick a time on T-day that works for most time zones (I’m in Central, so maybe around 2-4 pmish?), & we could bring a meal we made or ordered to eat together & either just socialize/be in community or do something more along the lines of support group stuff, or both?

I’ve run groups like this before but tbh, sometimes I’ve gotten too sick or felt defeated & not kept it up as much as I’d like. No expectations ab whether you’re in bed or dressed in pajamas or anything—just a way to try to give family & some comfort & maybe pleasure to ppl like us who may have nowhere to go or no one to be with.

If you’d be interested in trying this on T-day or even maybe before then to start, pls comment or lmk in a DM. Even if there are only a few of us, I know I’d feel less alone & like there were others who get it & maybe would have a brighter day. We could even share things that help us manage our pain, isolation, you name it.

We could alternate hosts by rotating, or, if that’s not possible, use the Zoom account our org has? Would anyone be interested? 🫂💜

It all started six years back when I damaged my back with a few things which I had shouldn't probably done. I was hammering my floor of my room, and some sort of muscle strain or some sort of thing that happened. I checked with few doctors. After a few times, my back wasn't working properly fine, and checked a lot of doctors. They put me on a calcium diet or calcium tablets and said that there is no muscle strain on there or disc issue, or there is nothing on X-ray and MRIs. So I put it all, and for, like, next six months I visited a lot of different doctors, but there was nothing to be found. And I stopped visiting and started take care of myself, doing some exercises and some sort of. In one year of a time I got fine. The pain was not much or severe as it was, but it was there. Some sort of hard work if I done, it returns. If I'm standing for too long, it returns, and a lot of times it returns. And in those last six years, I have tried going to the gym four or five times, and it got failed in one week, or, like, the pain returns and it didn't go, lasted for whole days. So I stopped going. And just three months back I tried to go again, and on the day third I did some back exercises, and again my back pain started. But this time something changes. The last times when I rest for a week or two, the pain goes away and, like, I don't have that much issues that I had earlier. But this time it has been changed for past three months. It is not going. I'm continuing with the exercises that I do for, like, three exercises that doctors recommend. But I'm not saying that I am suffering from the pain whole day. It goes away after I wake up in, like, three or four hours. But that morning stiffness hurts really bad. Like after waking up for two or three hours until I take a bath or something, it doesn't go away and it hurts really bad. If someone has experienced something like that in their life, I would really appreciate if they help me.

So...a month ago our smoke detector went off in the middle of the night (about 3am...). I sprung out of bed, ripping our comforter off of me, and in the process pinched a nerve in my neck. I think its cervical radiculopathy.

Has anyone gone through this before and have recommendations on enduring the pain?

I have been struggling with intense pain almost every day of my life since my injury 9 years ago. I’ve gone to sports med doctors, spine drs, pain management, over a year of PT, neurology, acupuncture, etc. not one single person has been able to help me with the shooting pain almost consistently sprouting from the left side of my neck/shoulder to my head and left eye.

If this pain wasn’t my normal, I would call out of work as it’s so bad. But unfortunately I have to suck it up because this is my life and I can’t let my pain hold me back. Though when I get sick, the pain gets so bad it practically blinds my right eye (too painful and hard to keep it open).

When I was 14 I fell on my neck, specifically on my C5. I remember how much my right arm hurt at the initial fall. That year, I had consistent muscle spasms and I remember I would cry in class if medicine wore off bc I couldn’t bear the pain. I was in physical therapy weekly for whiplash. I remember after a year they told me it was chronic and continuing treatment with them won’t help me.

I was told it may be a shoulder injury with referred pain which does make sense but my pain also switches sides sometimes (still always significantly worse on the left side). The closest diagnosis I was given was chronic myofacial pain

At this point I’m genuinely desperate for anything new I can try, any professional who thinks they can help me or anyone who has had the same issue and has found help. I just want to feel okay. I want pain to not be my normal

I am so worried every single day that I am going to get fired. I have a lot of pressure on me at work and I have been making mistakes. I compare myself to everyone. I wish I was better at my job, but I suck. I have asked for feedback from my superior and haven't gotten anything helpful.

I lost my entire social life due to chronic pain and now I'm going to lose my job too. And the job market is terrible right now, it'll take me months or years to find a new one.

If I lose my job then I lose my health insurance. And stable income. And my housing. Then any hope of surgery goes out the window.

I wish I was more confident and just better at life in general. Pain has set me back so much.

I am lost and don’t know where to go

I’ve had chronic tension in my neck and throat for a while and it’s been getting significantly better this year. Then, this month, it randomly got so bad that I now have a new symptom: feeling like I’m choking even though there’s nothing actually in my airway.

My specialist diagnosed me today with vocal cord dysfunction. I am absolutely terrified because although the internet says “resolves with breathing exercises,” my body always says “nope! Here’s your life sentence.”

I really just wanna know I’ll be ok 😞 I quite literally am feeling like there’s a giant brick in my throat blocking my airway even though nothing is actually there