u/Electronic-Cress-453

Not one treatment works. Every treatment is expensive. Never ending flares. Dropping out of university again because of my health. I am just in my 20s but isolated. My illness doesn’t even have a cure nor funding in research. No e*thanasia available. Everything hurts. Lost friends. Can’t even have relationships.

As a child I never imagined my life to be this shit.  

I have no support system, and I can barely look things up because the pain is so bad. If I Uber to the emergency room and they send me away, I will genuinely lose my life. I can’t find any other pain management doctors with a short waiting time. I feel like I only have one week left in me.

Things I have tried: Gabapentin, pregabalin, duloxetine, milnacipran, Journavx, tramadol, ibuprofen, and Tylenol.

Things I am currently taking: Tramadol (which does help, but it is not adequately controlling the pain during this bad flare) and pregabalin.

In the past, I was advised not to take tramadol frequently and was told to taper off of it because they felt I was too young to be on opioids. I am currently 21 years old.

My response to my doctor two days ago:

“Hello,
 
I am experiencing persistent, severe eye pain that has been around 7/10 since returning from my trip to Canada. I am concerned that the flight and travel may have triggered a flare of my eye condition.
 
I contacted my scleral lens specialist, [blank], and she restarted me on FML once daily after observing a localized area of swelling on the sclera. She also noted that my scleral lens appears to be rubbing against that area every time I blink, so it feels almost like a paper cut with each blink.
 
Unfortunately, the steroid has not provided meaningful relief so far, and I am still experiencing significant pain. Even tramadol is not adequately controlling the pain. I am seeing [blank] this upcoming Friday.
 
I am very concerned about what I should do at this point and would really appreciate your guidance. The pain is significantly affecting my ability to function, and I am struggling to determine whether I will be able to continue my college classes. I am considering having to withdraw again because I do not know how long this flare will last or whether it will improve.
 
This level of pain has become extremely difficult to manage day to day, and I am feeling overwhelmed and desperate for some relief. Could we please discuss what options are available for managing the pain while the underlying eye inflammation is being treated? I would also appreciate guidance on what I should do if the pain continues at this severity.
 
Thank you.

Their response:

Good morning [my name]!
 
I talked to Dr. [blank] and he said other than tramadol, he is not sure any other one is suitable, given your lack of response in the past.
 
Please let me know if I can further assist.
 
Best wishes,
[blank]  

Literally just dropped me with no solution and there are no options from their side.

I’m 22F, and I developed severe central neuropathic pain due to a chronic illness. My doctors neglected my concerns when I was first showing symptoms. After 2 years of neglect the pain started. I had to drop out of school, leave my job, and give up my hobbies and friendships. It has been a year of severe, constant pain. There is no cure, only treatments, and one by one, they keep failing me. I have a pain specialist therapist, but it doesn’t seem to be working. I also have treatment-resistant MDD (major depressive disorder), and medications have never worked that well for me.

There are a few things that pushed me to this level.

1)Everything hurts twice as much. Even pain medication can’t help during those episodes. The weather affects my pain so much, and I didn’t realize how much even mild wind could be a dealbreaker until now.

2. I met up with a relative and their friends, and everyone was successful. When they asked, “What are you studying?” I had to explain that I had dropped out. It was painful watching them talk about their success. I know I should be happy for them, but I couldn’t ignore the huge gap between their lives and mine. I kept slipping out of the conversation.

3)I realized that even if I had my old body back, I might not have been as successful or smart enough to attend a prestigious university. That realization really stuck with me and pierced my heart. I had always blamed my illness for my avoidant behavior, but now I’m wondering if I couldn’t have achieved what they did even without being sick. Their parents are so proud and happy for them, while like I’m just causing more financial stress for my own parents.

4)I had to change my prosthetic in front of them, and it felt incredibly humiliating and uncomfortable. There wasn’t even a private place for me to do it.

5)I walked outside and saw people who were happy, healthy, and stylish. I’m from a small town, so I don’t normally see that. I saw myself in the mirror at the museum and started crying, tears just falling one after another while I tried so hard to hide it. My bedroom, my safe place, felt so far away from me. I couldn’t afford an Uber because it was too expensive, so I had to take the metro while crying in pain and trying to navigate my way back to the hotel, while everyone around me is FUNCTIONING .
I had to overspend my budget, which means that when I go home, I’ll not only be more miserable, but I’ll also have spent more money just to accommodate my illness.

So when people tell you, “You can do it,” they don’t understand that sometimes you genuinely can’t. I’m not giving up because I’m lazy or because I don’t want a better life. I’m exhausted from having to fight my body just to do things that everyone else gets to do without thinking about them. I hate this stupid body and stupid brain.

I don’t remember the name of the fic; however, it is on AO3 and it is a pretty dark fic. It was long, had a lot of kudos, and was extremely sad with heavy SA trigger warnings.
The context of the fic is that Soap gets captured and tortured and becomes very traumatized until he gets rescued. However, he is discharged because of his injuries.
There are specific scenes from the fic that I remember:
He is scared of Ghost because Ghost’s mask was used during the torture.

Soap was heavily electrocuted during the torture.

Soap gets mad because Ghost offered him pineapple, but he is allergic.

His nephew or niece steps on his injured knee.

I don’t remember the exact name of the fic but J think the name was “hope”. it is on AO3 and it is a pretty dark fic. It was long, had a lot of kudos, and was extremely sad with heavy SA trigger warnings.
The context of the fic is that Soap gets captured and tortured and becomes very traumatized until he gets rescued. However, he is discharged because of his injuries.
There are specific scenes from the fic that I remember:
He is scared of Ghost because Ghost’s mask was used during the torture.

Soap was heavily electrocuted during the torture.

Soap gets mad because Ghost offered him pineapple, but he is allergic.

His nephew or niece steps on his injured knee.

I don’t remember the name of the fic; however, it is on AO3 and it is a pretty dark fic. It was long, had a lot of kudos, and was extremely sad with heavy SA trigger warnings.
The context of the fic is that Soap gets captured and tortured and becomes very traumatized until he gets rescued. However, he is discharged because of his injuries.
There are specific scenes from the fic that I remember:
He is scared of Ghost because Ghost’s mask was used during the torture.

Soap was heavily electrocuted during the torture.

Soap gets mad because Ghost offered him pineapple, but he is allergic.

His nephew or niece steps on his injured knee.

I don’t remember the name of the fic; however, it is on AO3 and it is a pretty dark fic. It was long, had a lot of kudos, and was extremely sad with heavy SA trigger warnings.
The context of the fic is that Soap gets captured and tortured and becomes very traumatized until he gets rescued. However, he is discharged because of his injuries.
There are specific scenes from the fic that I remember:
He is scared of Ghost because Ghost’s mask was used during the torture.

Soap was heavily electrocuted during the torture.

Soap gets mad because Ghost offered him pineapple, but he is allergic.

His nephew or niece steps on his injured knee.

I am technically disabled, but I have an invisible disability due to a chronic illness that causes chronic pain. Due to medical negligence from my doctors, I have never found love, so I decided to enter the dating world by downloading dating apps. I have found good people on it surprisingly, but my program is strict, so I have been able to shut down any ill-mannered or lustful men.

I am a 22 F considered attractive by societal standards, which in a way works in my favor to find a partner. However, the better you look, the less believable people get when you say you have a disability. On the dating apps, I have a picture of my CT scan of my brain for fun, and people ask me about it. So slowly, I tell them about my illness, not too detailed because I don’t want them to like me and then I say, “Hey, I am disabled,” and they leave or seem like I am trapping them, as if if they leave they will be the asshole.

The reason why I am asking this question is because I told one of the guys that I have chronic pain due to medical negligence and they just ghosted me. This left a bad taste in my mouth, especially because they were also in the medical field.

Now I have found what seems to be a great guy and also someone in the medical field, which he was interested in knowing about my illness and how to help me, which was sweet. But at the same time, when he asks about my plans and what I do, I have to keep unintentionally bringing up my condition. For example, he asks, “What are you doing?” and I say, “I have a doctor appointment,” or “I am getting my blood drawn.”

When he wants to do activities, I am making sacrifices to keep up with him without telling him. But when I am at my limit, I do tell him, like, “Hey, that activity is not for me because of my illness,” and it just makes me look lame. So I feel like if I keep saying that, he will get tired of me.

I am asking this because I don’t know what the healthy balance is to not annoy the shit out of the person and not sacrifice the heck out of myself because I don’t want to become toxic.

I am technically disabled, but I have an invisible disability due to a chronic illness that causes chronic pain. Due to medical negligence from my doctors, I have never found love, so I decided to enter the dating world by downloading dating apps. I have found good people on it surprisingly, but my program is strict, so I have been able to shut down any ill-mannered or lustful men.

I am a 22 F considered attractive by societal standards, which in a way works in my favor to find a partner. However, the better you look, the less believable people get when you say you have a disability. On the dating apps, I have a picture of my CT scan of my brain for fun, and people ask me about it. So slowly, I tell them about my illness, not too detailed because I don’t want them to like me and then I say, “Hey, I am disabled,” and they leave or seem like I am trapping them, as if if they leave they will be the asshole.

The reason why I am asking this question is because I told one of the guys that I have chronic pain due to medical negligence and they just ghosted me. This left a bad taste in my mouth, especially because they were also in the medical field.
Now I have found what seems to be a great guy and also someone in the medical field, which he was interested in knowing about my illness and how to help me, which was sweet. But at the same time, when he asks about my plans and what I do, I have to keep unintentionally bringing up my condition. For example, he asks, “What are you doing?” and I say, “I have a doctor appointment,” or “I am getting my blood drawn.”

When he wants to do activities, I am making sacrifices to keep up with him without telling him. But when I am at my limit, I do tell him, like, “Hey, that activity is not for me because of my illness,” and it just makes me look lame. So I feel like if I keep saying that, he will get tired of me.

I am asking this because I don’t know what the healthy balance is to not annoy the shit out of the person and not sacrifice the heck out of myself because I don’t want to become toxic.

I am technically disabled, but I have an invisible disability due to a chronic illness that causes chronic pain. Due to medical negligence from my doctors, I have never found love, so I decided to enter the dating world by downloading dating apps. I have found good people on it surprisingly, but my program is strict, so I have been able to shut down any ill-mannered or lustful men.

I am a 22 F considered attractive by societal standards, which in a way works in my favor to find a partner. However, the better you look, the less believable people get when you say you have a disability. On the dating apps, I have a picture of my CT scan of my brain for fun, and people ask me about it. So slowly, I tell them about my illness, not too detailed because I don’t want them to like me and then I say, “Hey, I am disabled,” and they leave or seem like I am trapping them, as if if they leave they will be the asshole.

The reason why I am asking this question is because I told one of the guys that I have chronic pain due to medical negligence and they just ghosted me. This left a bad taste in my mouth, especially because they were also in the medical field.
Now I have found what seems to be a great guy and also someone in the medical field, which he was interested in knowing about my illness and how to help me, which was sweet. But at the same time, when he asks about my plans and what I do, I have to keep unintentionally bringing up my condition. For example, he asks, “What are you doing?” and I say, “I have a doctor appointment,” or “I am getting my blood drawn.”

When he wants to do activities, I am making sacrifices to keep up with him without telling him. But when I am at my limit, I do tell him, like, “Hey, that activity is not for me because of my illness,” and it just makes me look lame. So I feel like if I keep saying that, he will get tired of me.
I am asking this because I don’t know what the healthy balance is to not annoy the shit out of the person and not sacrifice the heck out of myself because I don’t want to become toxic.

I don’t know if I’m being gaslighted or what, because they hand out gabapentin like candy without batting an eye, but when it comes to opioids, suddenly side effects matter.

One doctor says they don’t prescribe opioids because of addiction. Another says tolerance is the problem. Then another says they don’t prescribe them because of withdrawal.

So, are there any studies that challenge these claims or the way they’re commonly presented? I’d really appreciate it.

I don’t want to specify my exact diagnosis, but one of my organs was damaged due to medical negligence as a medication that was prescribed to me a year ago. I showed symptoms of that organ failing, but both the doctor and specialists ignored them. Now I am disabled. I am so enraged.

Fast forward to now, I have learned that I am not even eligible for an organ transplant, and the condition is incurable. I was also told that I should not be on opioids because I can develop tolerance.
It has been a year of being in constant 6/10 pain and being homebound because if I go outside, my pain reaches 8/10. I have tried gabapentin, duloxetine, pregabalin, nerve blocks, and after a year I was finally given tramadol, which reduced my pain to about 4/10. For the first time, I could actually go outside. Now I am being switched to milnacipran so I can come off tramadol. Which I have no hope that the new med will work for me.

I can’t stop crying because I am only 21, and I have no one to help me with doctor appointments. I feel like life has become incredibly hard, with not even a second of relief. I am losing my mind.

I am going to therapy and taking medications for my mental health, but nothing seems to work because I AM IN PAIN 24/7 and have been for the past year. i want to be like other regular people and to enjoy going out while not wanting to die from the pain.

I just wanted to rant about this here in case someone else has experienced something similar. When I try to bring this up with my therapist, she does not seem to understand why I feel like I have no choice but to escape my life and live through my dreams instead.

In my case, I am not sure if this is related to my medication, but I have very vivid dreams that feel extremely real and long. The most important aspect of these dreams is that my illness and disability are not present. I am “normal” in my dreams, and that is part of why I am not fully willing to give up this coping mechanism, even though I know it is unhealthy.

At the same time, I do recognize that this is an unhealthy way of coping, especially since I am actively trying to avoid my reality by sleeping more. What my therapist does not seem to fully understand is why I keep trying to escape reality and sleep so much, even though she knows I am mostly homebound and that most activities I try only cause me more physical pain. She is a therapist who specializes in disability and chronic illness, so I am not saying she is unqualified.

I guess I want to know if other people with disabilities that leave them homebound have experienced this, and if you were in my position, would you try to change this habit?

I just wanted to rant about this here in case someone else has experienced something similar. When I try to bring this up with my therapist, she does not seem to understand why I feel like I have no choice but to escape my life and live through my dreams instead.

In my case, I am not sure if this is related to my medication, but I have very vivid dreams that feel extremely real and long. The most important aspect of these dreams is that my illness and disability are not present. I am “normal” in my dreams, and that is part of why I am not fully willing to give up this coping mechanism, even though I know it is unhealthy.

At the same time, I do recognize that this is an unhealthy way of coping, especially since I am actively trying to avoid my reality by sleeping more. What my therapist does not seem to fully understand is why I keep trying to escape reality and sleep so much, even though she knows I am mostly homebound and that most activities I try only cause me more physical pain. She is a therapist who specializes in disability and chronic illness, so I am not saying she is unqualified.

I guess I want to know if other people with disabilities that leave them homebound have experienced this, and if you were in my position, would you try to change this habit?

I just wanted to rant about this here in case someone else has experienced something similar. When I try to bring this up with my therapist, she does not seem to understand why I feel like I have no choice but to escape my life and live through my dreams instead.

In my case, I am not sure if this is related to my medication, but I have very vivid dreams that feel extremely real and long. The most important aspect of these dreams is that my illness and disability are not present. I am “normal” in my dreams, and that is part of why I am not fully willing to give up this coping mechanism, even though I know it is unhealthy.

At the same time, I do recognize that this is an unhealthy way of coping, especially since I am actively trying to avoid my reality by sleeping more. What my therapist does not seem to fully understand is why I keep trying to escape reality and sleep so much, even though she knows I am mostly homebound and that most activities I try only cause me more physical pain. She is a therapist who specializes in disability and chronic illness, so I am not saying she is unqualified.

I guess I want to know if other people with disabilities that leave them homebound have experienced this, and if you were in my position, would you try to change this habit?

I am so tired of the medical system. Why can they not understand that chronic pain is different from acute pain? I do not even laugh when I am on my phone. Bro, I look miserable. Why ask me what level my pain is and then make your own analysis about it? Why even ask me in the first place?

Hey everyone, I have nerve pain and was first prescribed gabapentin, but it gave me no pain relief and caused brain fog. Then I was put on duloxetine, which also did not help with the pain. My pain management doctor recommended pregabalin ER, but my insurance does not want to cover it, so I would have to pay out of pocket.

I am wondering if it is worth paying out of pocket for the ER version or if I should just try generic pregabalin instead.

I don’t understand why I keep trying. I genuinely hate everything and everyone and I do not want to try anything anymore. This system is broken. I know it is all about finding who suits you and who helps you, but when you hit rock bottom and someone treats you like this, it really hits harder.

I have had good therapists before, but because of new insurance I had to change my therapist. I just had to pick the worst kind. Throughout the session she wanted to correct me on everything. She had this smirk on her face. I do not know if she knows it or not, but it looked very unprofessional and condescending. When I asked questions about ethics like MAID and what her opinion was, she said, “I do not think about it and I do not really have an opinion. I cannot control what my client will do outside of their sessions.” I do not know if she was trying to be nonchalant, but it felt like she did not care because she would not really engage and would just stare.

It felt like I was pulling teeth even when I asked for guidance. If I did not talk, she would stay silent, and I pointed it out and said I had never really had this style before. She shrugged and said, “It is your session so you have to do the talking.” She would just stare.

She asked me while filling out paperwork, “How are you feeling right now?” I said I was in pain because I was in a flare, and she said, “No, mentally. What you said is physical.” I was getting very annoyed by then, so I said yes, you can say in pain mentally too because of my physical pain. And she said, “I guess.”

Also, when I used the phrase “third world country,” she told me with a smirk that I should know that word is derogatory to use to describe my own country. I told her I was using it for my own country and asked what word I should use instead, and she shrugged and said it is using a third world country, such a Eurocentric point of view. Like can you hop off my back for a second. Wtf

More happened, but I do not want to make this an essay. I am in a flare now and I am angry that I paid for this and it made my mental state worse. Genuinely fuck this pain and fuck that therapist.

My pain specialist only seems to talk about duloxetine and pregabalin, but they tell me it takes 4–5 weeks to start working. Meanwhile, my chronic illness that is causing the pain is getting worse, and my pain is reaching very high levels. I do not know what can actually help me. I heard opioids rarely work for nerve pain, so then what does help?

I also cannot use creams or patches because the nerve damage/pain is in my eyes themselves. Any advices?