u/AI-Ruinseverything

I just need to rant somewhere people will understand.
I woke up today feeling like a lightning bolt hit me in the head. I stumbled trying to get to the bathroom, fell twice, thankfully I didn’t land on my wrist because I’m still in PT and recovering from surgery, and then threw up from the pain.

I wrapped my head in ice, put on a blackout mask and noise canceling earplugs, took my meds, and managed to get the headache down a little. But apparently the rest of my body didn’t get the memo, because everything else still hurts like hell and refuses to cooperate.

Today is one of those days where I don’t want to be strong. I don’t want to push through it. I don’t want another appointment, another problem to solve, another thing I have to figure out. I just want to lay here, cry, go back to sleep and let the world fuck off for a while.Except I can’t.

Because somehow, while my body is screaming at me to stop, I also have to figure out what the hell I’m going to do and how I’m going to do it, because I have to be out of where I’m staying by Tuesday morning at 8 AM.

And I genuinely don’t know what I’m going to do yet.
That’s the part that is breaking me today. If it were just the pain, I could crawl into bed, shut everything out and try again tomorrow. But chronic pain doesn’t make the rest of life stop demanding things from you. Sometimes the days when your body gives you absolutely nothing are the exact days life demands the most from you.

I know I need to figure this out. I know lying here crying isn’t going to solve anything. But fuck, can I just be exhausted and scared for a minute?

How do you guys get through the days when your body is completely done, but life doesn’t give you the option of being done?

While I was out today going between doctor appointments and physical therapy, I bumped into someone I haven’t seen in years. And I mean years, they knew me before I got sick. Back when I was physically fit, had a good job, traveled, had a social life and generally felt like I had a future I was excited about.

The second I recognized them, my first instinct was honestly to hide. 😂 But it was too late. They had already spotted me.

And then came that split second look. You know the one. That “Oh… wow, what happened to you?” look that someone tries really hard to hide before immediately switching to, “OMG! It’s been forever!”

They were genuinely nice. They weren’t trying to make me feel bad at all, which somehow almost made the whole thing worse.

“So what crazy, exciting things have you been up to?”

Cringe.

“Are you still traveling?”

Cringe harder.

“What are you doing these days?”

At that point I wanted the sidewalk to open up and swallow me.

Then they started telling me about their life. They’ve been traveling a ton. They started working for a company with incredible benefits, so apparently they travel for work and then spend their free time traveling too. They met their fiancé at a conference in Las Vegas. Things are going great for them.

And I want to make this really clear: I was genuinely happy for them. They weren’t bragging. They weren’t insensitive. They were just an old acquaintance excitedly catching me up on their life and assuming I probably had my own stories to tell.

But with every answer, I felt myself sinking a little further.

Because while they were talking, I was desperately searching my brain for one thing. One genuinely good thing happening in my life that I could enthusiastically tell someone who hadn’t seen me since before all of this happened.

And I couldn’t think of one.

My life now feels like doctors, specialists, physical therapy, tests, referrals, medications, pain, trying to get through the day and then recovering enough to do it all over again. The person standing in front of me remembered someone who worked, traveled, had plans and actually did things. Meanwhile, I’d literally run into them while going from medical appointments to physical therapy.

It was such a weird collision between my old life and my current one.

Eventually I just said, “It was really great running into you, but I have to go or I’m going to be late.”

Then came, “Okay, well, take care. It was great seeing you!”

And that was it.

No “we should grab a drink sometime” or “let’s hang out soon.” Not that I could realistically do much of that anyway. And maybe I’m reading way too much into something completely innocent, but for some reason even that stung.

I walked away feeling like absolute shit.

Not because I begrudge this person anything they have. Quite the opposite. I’m happy that life has been good to them. It just suddenly forced me to look at how dramatically my own life has changed and how much of the person they remembered feels like someone I don’t even recognize anymore.

Chronic illness takes so many things from you that aren’t listed on a medical chart. Sometimes you don’t even realize you’re grieving them until something completely ordinary reminds you.

I think today I was grieving the version of myself that this person still remembered.

Has anyone else had this happen, running into someone from your life before chronic pain or illness and suddenly feeling painfully aware of everything that’s changed? How do you handle those conversations when someone asks, “So, what have you been up to?” and the truthful answer feels too depressing to actually say?

I am feeling particularly depressed,burned out, exhausted and just hating what my life has become right now.

10+ years ago. Great job, good money, wonderful woman (whom I wanted to marry), thinking about her having my kids, excited about life, healthy and very active!

Now. I am single. At times so lonely I cry, I haven’t hugged anyone in years. Been single so long I don’t know how to date someone even if they wanted to date me. In a constant argument with God. In excruciating pain majority of the time, longing to be with someone but so alone. No job prospect, no place, lost everything and on a downward spiral.

Asking myself what’s the point? I have been so focused on getting healthy that now that I am not and looks like I won’t ever be, what’s the point? I got nothing.

I just feel so lost, alone and hopeless.

How do you turn your life around and give yourself something to live for when you have nothing, no one and chronic pain keeps throwing things at you?

I’ve lost faith in ever finding a diagnosis. At this point, I’ve pretty much given up on chasing one. My doctors have repeatedly told me some version of, “We may never know exactly what this is, so let’s stop searching for a name and focus on treating the symptoms.”

Fine. I accepted that. Just treat the symptoms and help me function.

Except the last week has been pure hell, and apparently even that isn’t as simple as it sounds.

I absolutely hate going to the emergency room and generally avoid it. This time I was basically blackmailed into going, another story for another day. I get there and it’s essentially:

ER: “Okay, you’re here for A. We’re treating A. Those other things you’re experiencing aren’t what you came in for. Here’s medication for A, but you need an urgent referral to Specialist #1 immediately.”

Okay.

Specialist #1: “Stop taking that medication immediately. Here are two different medications. Also, with A and B happening, I want this information sent to Specialist #2 because this could be important to your diagnosis or potentially change it. You need to follow up with them sooner rather than later.”

Okay…

Specialist #2: “I’m not really sure what A and B have to do with C. C looks like a separate issue. I wouldn’t worry too much about it. Here’s another medication for C.”

And this is where I start losing my mind.

Because I’m sitting there wanting to scream, “Can somebody please look at A, B, C AND D at the same time?”

Maybe individually A isn’t that concerning. Maybe B can wait. Maybe C really is its own separate issue, and maybe D is nothing. I’m not a doctor, and I’m not pretending to be one. Maybe they really are completely unrelated.

But when multiple things start happening concurrently, is it really unreasonable to ask whether somebody should step back and look at the entire picture?

Especially when you put A + B + C + D together and the general consensus suddenly becomes considerably more alarming: that combination could potentially indicate something serious or even life threatening. Call 911 or go to the emergency room.

That’s what scares and frustrates me.

I’m not trying to diagnose myself or convince anyone that the worst case scenario is happening. I desperately don’t want it to be happening. I just want somebody to look at everything concurrently and tell me why it isn’t something serious, rather than four different people looking at one piece each and reassuring me about that individual piece.

I also really wanted to say, “Shouldn’t we biopsy this while it’s actually here?” If there’s an opportunity to get objective information that might explain even one piece of this mess, why are we just treating it and moving on? Instead, another medication, another “wouldn’t worry about it,” and another appointment.

And now I’m stuck with the worst possible decision.

The combination of symptoms is concerning enough that the advice is “Call 911 or go to the ER,” yet I’ve already gone to the ER, followed their instructions, urgently followed up with the specialists like I was told to, and somehow arrived right back at two different versions of “eh, probably nothing to worry about.”

Given how badly I’ve historically been treated in emergency departments, I don’t want to go back. But then there’s that little voice in the back of my mind saying, “Okay, but what if this time it actually IS the emergency everyone tells you not to ignore?”

So now I’m stuck in this ridiculous place where I’ve stopped demanding answers. I’ve stopped expecting someone to finally connect all the dots. I’m doing exactly what I was told to do: focus on treatment and symptom management.

But how am I supposed to do even that when every doctor seems to be treating a different square inch of me?

I’m frustrated. I’m scared. I’m in too much pain. I’m exhausted from advocating for myself, coordinating doctors, chasing referrals, repeating the same history, starting and stopping medications, and trying to figure out which symptoms I’m supposed to worry about and which ones I’m supposed to ignore.

That’s the part I don’t think people understand. It isn’t simply frustration anymore. It’s fear mixed with exhaustion, pain, and complete uncertainty about who I’m supposed to listen to.

At some point you don’t stop caring because you suddenly feel okay about any of this.

You stop because you’re exhausted, you’re hurting, and you simply don’t have anything left in the tank.

So how do you dig deep and find your voice again when you’ve reached that point? How do you keep advocating for yourself when you barely have the energy to speak up especially when there’s that little voice in the back of your mind asking, “What does it matter? Is anyone actually listening anyway?”

I was just prescribed testosterone since the pain medications have killed my testosterone and they think it could also help with my pain tolerance. I am up for trying it because we aren’t taking away more meds, well not yet.

But I picked up the prescription and apparently it takes two needles, ones specifically for the bottle and then one for injecting, but the doctor didn’t prescribe any?

So the pharmacy won’t give me any needles to take the medication. The pharmacist says they have to reach back out to the doctor to see if they will prescribe me needles so I can take the medication?

But they give out free needles; so are the needles that are used to inject drugs not the same for medications?

I think I’ve finally given up on trying to find out what’s wrong with me.

I’ve accepted what my doctor told me: “Your disease doesn’t have a diagnosis at this point and probably never will, so let’s stop chasing one and treat the symptoms.”
I thought that’s what I’d been doing all along. But okay… silly me for wanting a diagnosis. Silly me for hoping there might still be a chance to understand what’s happening, find a treatment, or maybe even a cure someday.
So I keep getting referrals to more specialists, more treatments, and “better medications.”

I saw neurology today, and to be fair, the doctor was kind and respectful. But why does one of the first conversations so often become reducing pain medication before anyone really understands how I’m functioning?

My chart shows nerve ablations, countless injections, six surgeries, years of physical therapy, and just about every recommended procedure and medication. Why can’t doctors listen to the patient first? Why can’t they ask what our goals are before deciding what needs to change?
I can’t speak for everyone, but I don’t want to spend the rest of my life on pain medication. If there were something that actually restored my function and let me enjoy life again, I’d gladly choose that instead. My goal has never been medication, it’s getting my life back.

Ironically, I was closer to that goal before my medications were reduced, and then reduced again, while other medications were taken away. I was more functional. I could do more, hurt less, and didn’t have to constantly calculate whether doing one thing meant I wouldn’t be able to do something else because the pain would be unbearable. Now it feels like every decision is a tradeoff. “If I do this today, what won’t I be able to do tomorrow?” That’s not living, it’s surviving.

Instead, I feel like I’m stuck in a never-ending game of, “What’s the next specialist? What’s the next test? What’s the next treatment?”

I think I’m finally done chasing a diagnosis. If answers come someday, I’d welcome them. If they don’t, I have to make peace with that. What I can’t accept is surviving instead of living. At this point, I don’t need miracles! I just want a care team that’s as committed to improving my quality of life as I am.

How do you get doctors to see you as a person instead of a chart or a diagnosis code? How do you keep advocating for yourself when it feels like you’ve already been labeled before you even walked into the room?

I’ve been living this way for years now. I honestly don’t know how much longer I can keep chasing answers. For those of you who’ve been through something similar, what helped you keep your hope alive?

Another sleepless night, alone. Alone with half coherent thoughts and brief glimpses of partial memories of what life was like before chronic pain. Struggling to focus on anything other than pain. It’s relentless. Unable to physically move other than the occasional tossing and turning companied with uncontrollable muscle spasms just trying to find a position that doesn’t hurt as much. A way of laying that doesn’t bring me to tears. Pain has taken so much along the way; my mobility, my health, my relationship, my friends, my family and I fear me. Certainly who I used to be. Intermittent Insomnia has made the fatigue so much worse. And on the rare occasion where I get to sleep, I no longer dream. I haven’t dreamed in years. My dreams were the one place I could be happy, pain free and live life. Now what do I look forward to?

What do you do when you need something to look forward to?

Starting July 1, 2026 AB660 goes into effect. Which requires Food manufacturers, processors or retailers to standardize the language used to communicate food quality and safety. Apparently having the sell by date along with the best-by-date or expiration date is too confusing and has led to excessive food waste.

I am sorry but are we serious? Is this really the legislation that’s getting passed in California? It’s sad, really sad a waste of tax dollars and soon to be more food.

Do you think it’s necessary? Have you been confused this whole time?

Scopely why? Please tell me why you insist on just screwing up this game ever way possible?

The Battle pass bs?

The stupid lack of terror credits that are linked to the Battle pass?

The command center which is also linked to the Battle Pass and gives out practically no terror credits?

Wtf 🤬 are you all just smoking your profits? I mean you have to be stupid high to continue to screw this game up, make the amount of mistakes you keep making and then to top it off basically bend over and take it up the tail pipe with a smile and at the same time be willing to say “Fuck you honest loyal players who didn’t cheat”!

In all sincerity I say this out of love of the game, change your ways! Or please just take the game offline now. Better to go out with your head held somewhat high than to run this into the ground.

Roll back the Battle Pass or ditch the Command Center and actually give out terror credits. Oh and if you want more players and the honest ones who left to come back get rid of those cheaters and Permanently Ban the cheaters.

You owe that to all of us honest players and double for us that purchased milestone points.

My care has been split between two major facilities; I have been seeing the same pain clinic for more than five years, without issue. That whole time I was seeing one provider,occasionally when not available I have met with 3 other doctors and two NP’s that they worked with. 8 months ago they left the practice for another place out of state. I started seeing the new doctor, they switched my meds to 28 instead of the standard 30. I started having prescriptions not be filled on time, pharmacy said it was insurance issues because of the fill date. So I would spend 2-3 days with out my pain medications. During that time no withdrawal symptoms, just excruciating pain. So I asked my doctor to please help me fix this issue. I told the dr the pharmacy says it’s the way the prescription is written, the dr got defensive and I tried to just politely say “ I don’t what this issue is, but if going back to the 30 day supply will fix it, can we do that?”

After that appointment I noticed that uncomplicated opioid dependence was added to my chart and that’s when they attached a do not fill order until this date, which is a day after it should be filled. I have tried writing letters in my chart to discuss removing it, 3 in total but the Dr does not read messages. I have been too scared to bring it up again in person because if this pain contract.

My doctors at the first facility have all started to treat me different, shorter appointments, not listening and my care has been differ now and they are recommending treatments based on this diagnosis like starting cbt for pain and lucyemera and buprenorphine. My pain doctor keeps pushing nerve blocks and injections with these meds. Has talked about reducing my pain dose. So everytime I go in I fear it’s the day she takes it away.

The first facility is where I see my Neurologist, primary, pain, ophthalmologist, ent, GI, podiatrist, rheumatologist and endocrinologist. The second one I see my ortho surgeon, urologist, physical therapist.

The one saving grace was the second facility didn’t have that in my charts and I was treated good, like an actual patient. The doctors actually took the time to listen to me and address the issues. I was scheduled for surgery on my forearm, the doctor wanted to prescribe more pain medication for breakthrough pain. I said “ I can’t have you write any additional pain medication and do not want any, I have a pain contract that I adhere too.” Well they called my pain doctor and transferred my records. I had a OnQ catheter pain pump installed (lasts 3 days) and they wrote an additional pain prescription to take (20 day supply) I refused to pick it up. After undergoing the surgery and being sent home, they called a day later, I said the pain ball didn’t appear to be working, they said it most likely was and they would check up on me tomorrow. They called the following day and I again told them that the ball doesn’t appear to be working “it’s the same size” that’s when they suggested I come in tomorrow, Friday (which would be day 3) since I am seeing my urologist in the same building and they would inspect it, fix it and reinstall it if necessary. I said ok. Then about an hour later they called and said “it doesn’t make sense to come in. Since we planned on removing it then. We will call you Friday night to walk you through removing the catheter.

I went to my urologist and it was the first time he was late, over an hour (usually always on time) was really short with me, didn’t give me a chance to discuss anything and just said see you in six months. This was night and day, compared to my last visit when he took his time with me answered all my questions and told me “ don’t worry we will figure this out together”.

The ortho team never called back to check on me or to help me remove the catheter. I am scared now, because I feel like no matter what I say, like my pain is worse (not mentioning it for purpose of getting more pain medication, but because I am worried and want to make sure everything is ok), the site where the catheter was is welted, red and I feel a burning pain there.

I just feel so disappointed, scared, let down and lost.

I was so hopeful, the doctors at the second facility for the first time actually listened to me and gave me some hope. Now I feel like that is gone. I just don’t know if I can fix it or what to do.

I feel like I am a prisoner to my pain doctor. I am afraid to speak up out of fear that my pain meds will be taken away and my future care will be made worse.

Anyone else going through this? Went through this? How’d it work out for you.