u/Electronic-Cress-453

I don’t want advice and I don’t want to mention the name of my condition because people ask questions about it and I have no energy left to keep explaining it. Just know that it has no cure and I have seen 20 specialized doctors. I am here because I am tired and sick of trying. I’m sorry if this sounds harsh or idiotic of me because I know people mean well when they ask, but trust me, I have tried everything.

I was in a state of 10/10 pain for three months. I couldn’t eat, use the restroom, or sleep. I was basically a corpse, and my throat gave out to the point that I lost my voice for a while. I would scream from the pain, and it got so bad that I wanted to claw my eyes out, to the point where my parents had to physically hold me down. Sedatives made things worse, but I was still forced to take them because I was so desperate to escape my own skin. I had to be supervised constantly and barely slept. I don’t even know if I went into psychosis from the amount of pain I was in. Nobody helped me, and I mean nobody. Yes, I have been to therapy and psychiatrists. No opioid worked because it is nerve damage, and of course I am not a candidate for nerve pain treatment. I used prosthetics, which helped reduce the pain to around a 4 or 5, but now my body is rejecting them and my pain is rising again.

Not to mention I am in this hell because of medical negligence from doctors. I reached stage 4 because it was ignored by them, and now it is not reversible.

If you tell me to have hope, maybe I am idiotic, but I think it is cruel to say that. The only hope I have is a time machine to take me back to before that doctor messed me up, before my parents drove me there. I want to go back to the time when I was just a kid. I keep having memories of my past in my sleeps. When I was a kid people would tell me I would do so much good in life. It crushes me to find out that it will never be the case for me and that the old me is just going to perish from the mount of pain I am currently in.

I am in my first week on 20 mg.

For the second week, I am advised to increase it to 40 mg. For context, I slowly tapered off 600 mg of gabapentin and made sure to completely stopped before starting duloxetine.

Right now I am in a lot of pain, much worse than before. Gabapentin was not helping much because my pain so idk if duloxetine increasing the pain or that it is because I am just starting on it.

One of the less well-known side effects is that it can worsen my chronic illness, which is why I am very aware of whether duloxetine is worth it or not.

I am in so much pain that I am crying. Fuck it hurts so bad. I am homebound again. Crying is useless but I can’t deal with this amount of pain.

I heard people on social media say that those with chronic illnesses, disabilities, or chronic pain sometimes develop a “victim mentality.” Lately, I have been reflecting on that idea because of something a friend told me.

After I explained why I feel so burnt out, I realized I was criticizing the medical staff and their knowledge a lot. My friend said, “Why do you keep blaming people but never blame your body that is causing you all this pain?” That comment really stuck with me.

For context, my chronic illness and severe chronic pain were made worse because of medical negligence and a treatment plan that caused harm while my concerns were brushed off. Because of that, I now have medical trauma. It made me wonder if I am developing a victim mentality or if my reactions are understandable considering the circumstances.

I cannot work because of my condition, and with the current economy I sometimes feel like dead weight. I also stopped going to my previous therapist because no amount of therapy seemed to make me feel better when the problem felt environmental and physical rather than purely mental, although I know the two are connected. Sometimes I wonder if I am preventing myself from getting better, or if I am just thinking about things realistically.

I also question why I feel the need to place blame somewhere. When doctors dismiss me, I end up blaming the medical system. Since my experiences do fit those circumstances, I do not know whether that is considered a victim mentality or simply a response to repeated negative experiences.

I wanted to know your opinions and hear about your own experiences or journeys with this.

I always wondered if feeling uncomfortable is also considered pain, because on the pain scale I know it is never zero as my body has a foreign sensation due to nerve pain. The constant discomfort drives me crazy. Let me clarify what I mean.

I know this is a torture method where there is constantly a drip of water hitting a person’s face for long periods of time with no pause. It doesn’t hurt, but it is very frustrating and creates mental strain.

I have been told my a nurse that feeling of discomfort is not really under the pain scale level. So idk.

Hi everyone i just wanted to get you guys’ opinions and advice. For context, I have a complex eye issue that is a chronic illness that causes me chronic pain. It is the first year since my problems started and of course I have had to go to different specialists in the beginning to figure out why this is happening and to branch out and find treatments. Of course, with how complex the eye disorder is, I have to visit many specialists and get second and third opinions because I need to make sure I am on the right track. You would not believe how many doctors unfortunately give wrong or dismissive information just because they are not specialized in that specific department.

Anyways, I have an HMO plan and my insurance only allows my PCP to make referrals to specialists. Because of my complex eye issues and possible autoimmune disease, my PCP is mainly there for referrals in my case since everything is way too detailed and specialized for him.

Over the past month and a half, I have requested referrals for a pain specialist, scleral lenses for my GPC, an allergist for my GPC to determine if I may be allergic to something that is causing my pain to spike to a level 6 daily, a dermatologist for persistent eczema worsening near my eye which may be contributing to my symptoms, and a glaucoma specialist after my eye pressure spiked dangerously when starting steroids, requiring an urgent referral. Which, the dermatologist and allergist may seem like I am just wasting time, but my specialist recommended checking for those too because these reactions can cause me to develop contact intolerance, and the special lenses are one of the biggest parts of my pain management. So those appointments are important.

Something else is that I cannot wait to get referrals right before appointments because sometimes appointments are months out, and I am also on cancellation and urgent waitlists. Sometimes I can suddenly get a call when a cancellation happens.

I know it is probably annoying to doctors and their teams, and I get it, but I honestly do not know what to feel about it as a patient. Do I need to stop going to appointments for a bit so they can catch a break, or should I change my PCP? I do not want to be a bad patient. I always try my best to be as understanding as possible, but right now I feel like this could jeopardize my health journey.

Hi everyone i just wanted to get you guys’ opinions and advice. For context, I have a complex eye issue that is a chronic illness that causes me chronic pain. It is the first year since my problems started and of course I have had to go to different specialists in the beginning to figure out why this is happening and to branch out and find treatments. Of course, with how complex the eye disorder is, I have to visit many specialists and get second and third opinions because I need to make sure I am on the right track. You would not believe how many doctors unfortunately give wrong or dismissive information just because they are not specialized in that specific department.

Anyways, I have an HMO plan and my insurance only allows my PCP to make referrals to specialists. Because of my complex eye issues and possible autoimmune disease, my PCP is mainly there for referrals in my case since everything is way too detailed and specialized for him.

Over the past month and a half, I have requested referrals for a pain specialist, scleral lenses for my GPC, an allergist for my GPC to determine if I may be allergic to something that is causing my pain to spike to a level 6 daily, a dermatologist for persistent eczema worsening near my eye which may be contributing to my symptoms, and a glaucoma specialist after my eye pressure spiked dangerously when starting steroids, requiring an urgent referral. Which, the dermatologist and allergist may seem like I am just wasting time, but my specialist recommended checking for those too because these reactions can cause me to develop contact intolerance, and the special lenses are one of the biggest parts of my pain management. So those appointments are important.

Something else is that I cannot wait to get referrals right before appointments because sometimes appointments are months out, and I am also on cancellation and urgent waitlists. Sometimes I can suddenly get a call when a cancellation happens.

I know it is annoying to doctors and their teams, and I get it, but I honestly do not know what to feel about it as a patient. Do I need to stop going to appointments for a bit so they can catch a break, or should I change my PCP? I do not want to be a bad patient. I always try my best to be as understanding as possible, but right now I feel like this could jeopardize my health journey.

Anyone else feel terrified about how the U.S. economy is going right now, especially while dealing with chronic pain, chronic illness, or disability?

Gas prices are getting out of control, and I can’t even imagine how this is going to affect insurance coverage and medication next year, especially with so much funding being cut from healthcare.

I genuinely don’t understand the point of any of this. The rich keep getting richer while the rest of us are being squeezed for every dollar. I was about to get a part time job just to afford the cost of staying alive with my illness, even though I’m already in constant pain at a level 6 and working a normal job would just make my condition worse. Even that might not be enough. It feels like even full time work wouldn’t fix it, since taxes would take such a large portion anyway. My caregiver is exhausted and we are barely surviving.

Genuinely fuck humanity. Imagine working and most of your tax is going overseas killing innocent civilians when that money should be used to help your citizens not be in debt for just seeking basic medical needs. What a joke. How can anyone possibly say this life is worth it. It feels people are only saying that because they are afraid of the uncertainty of the afterlife.

Gas prices are getting out of control, and I can’t even imagine how this is going to affect insurance coverage and medication next year, especially with so much funding being cut from healthcare.

I genuinely don’t understand the point of any of this. The rich keep getting richer while the rest of us are being squeezed for every dollar. I was about to get a part time job just to afford the cost of staying alive with my illness, even though I’m already in constant pain at a level 6 and working a normal job would just make my condition worse. Even that might not be enough. It feels like even full time work wouldn’t fix it, since taxes would take such a large portion anyway. My caregiver is exhausted and we are barely surviving.

Genuinely fuck humanity. Imagine working and most of your tax is going overseas killing innocent civilians when that money should be used to help your citizens not be in debt for just seeking basic medical needs. What a joke. How can anyone possibly say this life is worth it. It feels people are only saying that because they are afraid of the uncertainty of the afterlife.

Gas prices are getting out of control, and I can’t even imagine how this is going to affect insurance coverage and medication next year, especially with so much funding being cut from healthcare.

I genuinely don’t understand the point of any of this. The rich keep getting richer while the rest of us are being squeezed for every dollar. I was about to get a part time job just to afford the cost of staying alive with my illness, even though I’m already in constant pain at a level 6 and working a normal job would just make my condition worse. Even that might not be enough. It feels like even full time work wouldn’t fix it, since taxes would take such a large portion anyway. My caregiver is exhausted and we are barely surviving.

Genuinely fuck humanity. Imagine working and most of your tax is going overseas killing innocent civilians when that money should be used to help your citizens not be in debt for just seeking basic medical needs. What a joke. How can anyone possibly say this life is worth it. It feels people are only saying that because they are afraid of the uncertainty of the afterlife.

I am so baffled by how they can mess something so simple up multiple times. For context, I am a chronic illness and chronic pain patient and this is my first year dealing with a lot of specialists. My insurance plan requires my primary care doctor to send referrals to specialists in order for them to be covered.

When I submit a referral request, I make sure to include the doctor’s name, phone number, facility name, profession, and the reason for the referral. I triple check everything. But somehow they still keep messing it up and I genuinely do not understand HOW.

These are just SOME of the mistakes they have made: 1. Resending a previous referral to insurance when I needed a completely different doctor, not the old one. I literally send a referral request with the new doctor information and choose my previous referral. Like do they even read?!

2.	Sending a referral to a totally different doctor that I did not even write down, even though I always check with my insurance first to confirm the provider is in network, so I do not understand why they keep switching the doctor.
3.	Telling me they sent a referral, but a week later there is no notification from my insurance. When I called insurance, they said the office never sent it. After escalating it to a manager, they tell me all this happened because they did not even have my insurance card on file, even though i did give my insurance information to them and they didn’t know it was a HMO plan which i literally told them and have them updated on my insurance plan. It took 5 employees to finally figure THAT was the issue?? Not to mention when i had the insurance representative on the phone with them they hung up on is in middle of the call and did NOT call back. 

They NEVER apologize for their mistake I even brought it up to the manager when we talked and SHE didn’t even apologize either. She just told me she will fix it. They make it look like I MADE the mistake when I literally show the patient portal and then somehow the manager can’t see my message on their side while their front desk lady could. Like they are lying through their teeth and i have to put up with it because this medical system is SHIT.

I AM planning to change my primary care doctor, but for now I have to deal with it because switching is a long process. I would have to transfer my medical history, update insurance information, and schedule a new appointment just to explain my full history again.

I am just so frustrated. I am sick and in pain but they make me to play all the roles. A doctor, MA, nurse, caregiver, insurance representative i have to play all of these roles in order to get basic help like god I am exhausted.

I just want healthcare providers or literally anyone to reframe giving religious comments when they learn about my chronic illness that causes severe chronic pain with no cure. “I don’t know if you are religious, but when things go wrong I always think everything happens for a reason.” Like seriously, what is the reason?

I can barely afford to pay my medical bills, I am homebound most of the time, I had to drop out of college, I am relying on my old parents, and I cry every day because of the pain. Do people not hear themselves?

Is it that uncomfortable for people to believe we live in a cruel world and sometimes people get sick not because they are given a task to complete, but because it just happened? Why would a god give me this illness, which was caused by negligence of doctors as they did not monitor my medication and its long term side effects, which caused me to be in this situation?

Why would I go through that while someone else does not? With her logic, god sabotaged my life so much that I am looking into Switzerland for ethansia. Seriously wtf!!!

My primary care doctor told me to consider using Functional Health because, with all the tests I want, it would be more expensive to go through insurance. So I’m wondering if it’s worth it and legit to pay $365 for it.

My primary care doctor told me to consider using Functional Health because, with all the tests I want, it would be more expensive to go through insurance. So I’m wondering if it’s worth it and legit to pay $365 for it.

I feel like I can’t do this anymore. My mind is spiraling, and yes, I am medicated resistant for my OCD. Nothing works for me, and my health is declining which is feeding my OCD. I cannot stop my mind, and it has caused severe insomnia. I tried zolpidem for it and almost went into psychosis.

I just received bad news about my health. I am at risk of going fucking BLIND because of the medication that was treating my chronic illness. I almost fainted in the doctor’s office, they had to sit me down, and now I have to wait a week just to keep checking my eye pressure to see if it goes back down or if I will need surgery. Meanwhile, that medication was helping me, and other people were not reactive to it.

I feel like I have such bad luck. What the fuck is this. I came home without realizing I was clenching my hand so hard that my nails dug into my palm and now it is bleeding. This is not the first time a medication that helped me ended up causing me harm. One time everything was going so well and then I got an allergic reaction after it.

Can someone just for the love of god calm me down? My treatments keep failing and I have to fight with insurance, doctors, pharmacy, and my own damn brain just to LIVE. I am doing all of this when people out there do not have to do anything of these and are healthy without doing ANYTHING. Can you believe I pay to be 1/10 of their health. I have noone to help me with these and trust me i am trying everything in my power to get “better” but my body is garbage. I feel natural selection is taking me out itself at age of 21.