Yeah, I’m pretty tough and try not to complain but this pain is debilitating. It has been for a very long time. It’s been slowly and steadily worsening to the point I’m not really able to eat anymore, am in pain everyday like my guts are eating themselves and have gone from being borderline impacted at most times to constantly having the runs for no reason. Mostly bedbound at this point and the things I can do are severely diminished. This isn’t even my main fucking disability. I am medically complex.
I’ve been seeking help for at least 15 years, closer to 20 now. I’ve taken the meds that are supposed to dull the pain. Had all the tests. I’ve done the liquid medical diets. Have admitted myself to emergency department repeatedly in the past, and have had drs/specialists be pretty rude and indifferent about it, telling me it’s psychosomatic, or dismissing me as a drug seeker. I’ve been denied more tests by the gastroenterologists despite the last ones being 6 years ago and an important one being unsuccessful. Seeking a second opinion got me charged out the nose and handballed back. I’ve also been denied a J tube that would feed me abdominally.
This is unfortunately a common experience for chronically ill/chronic pain patients. But I’m going to have another crack at the hospital merry go round on Monday and hoping that having someone to back me up helps. Unfortunately Melbcat will have to go into temporary foster care which is so hard for me. (I can’t explain to her what’s happening, tell her not to be scared or reassure her that I’m coming back. And a run of bad luck means we weren’t even able to get her to her vet appointment yet. Every single time we line one up something happens and it falls through.)
But this chronic severe pain and inability to eat is debilitating, it has been for a long time, and without being dramatic it is genuinely making me consider ending my life if it can’t be controlled. I can’t just keep doing this anymore.
I’m not expecting much though. The most likely outcome is waiting hours in the emergency department, experiencing more annoyed dismissive treatment, doing another round of tests just to find nothing, and going right back to trying to cope with and cover up the pain. Probably will have to come back here and tell you guys that nothing has been found or has changed.
I would undergo surgery if it would help but unfortunately it’s high risk for poor results.
This is the disability/chronic pain experience I’m afraid, at least as a poor/public hospital patient. You eventually go in the too hard basket and start getting blamed. I don’t know where to go to from here. There’s a lot I want to live for but it’s getting so bad that if it wasn’t for Melbcat I would already have done it.
Ps. Please don’t offer me suicide helplines. They’re actually quite terrible.
I’m so sorry to hear you are having such a horrid situation. Hang in there. You can do it. Hope the hospital visit can give you some answers. But also, whilst it is true that sometimes a diagnosis cannot be found, can they work towards some kind of treatment like pain management, diet, counselling to help you manage the situation. If no diagnosis forthcoming, word up the person supporting you to help you ask about how doctors can help lessen the symptoms to improve your quality of life. Perhaps they can refer you to a pain management specialist? A physician? I very much hope you can find some relief.
Thanks. I really hope for some answers as the previous efforts have been very cookie cutter with little result.
I’ve been to pain management clinics before for different issues and left because it wasn’t suiting. (I was unable to manage the physical therapy and was afraid of the prescription painkillers - which incidentally did end up killing my cousin) but am willing to go back and try again.
@melbaboutown@bot001 I can’t offer anything really except empathy, I’ve only just experienced extended intense pain from a herniated disc, and even after 2 weeks I was thinking, if this doesn’t get better, I don’t know how I’m going to keep going, it’s absolutely terrifying to consider years like that. I’m fortunate to seem to be one of the 90% that responds to conservative management but I’m on long term pain meds, and I’m really not sure if the injury is healing by itself or the pain is being masked by the meds.
One thing from your story though, I’ve read that an emerging treatment for a range of gastro issues is gut microbiome transplant, might be worth looking into if you haven’t already as it’s probably not going to be recommended by many gastroenterologists.
Hey mate I don’t have much to offer but I’m very sorry that you’re going through this and I hope you get through this safely. My DMs are always open if you want to have a chat though :)
Can you get a patient advocate in hospital?
I know some states have rules about patients asking for help after being refused.
I’m sorry you’re going through this, I spent years getting diagnosed with gastroparesis after many dismissals from specialists who didn’t even do the basic test. Was also told it’s stress, anxiety, psychological etc.
Anyway peg/j tubes are fairly standard things if one can’t eat /digest properly, what is their pushback reason on those?
Chronic pain is a hard problem to solve, pain specialists are super expensive and just seemed to push infusions or other medications rather than trying to work out the source. I had no success with them tbh. Have you read “explain pain”? (Apologies if you’re already aware of this and it’s not helpful).
The specialist tells me that they don’t do it because of risks. My main disability also means poor wound healing that could lead to complications, and I’m being told that it could end up being permanent.
Having read up on it I agree but I am getting desperate.
TW Chronic pain, TMI medical issues, suicide.
Yeah, I’m pretty tough and try not to complain but this pain is debilitating. It has been for a very long time. It’s been slowly and steadily worsening to the point I’m not really able to eat anymore, am in pain everyday like my guts are eating themselves and have gone from being borderline impacted at most times to constantly having the runs for no reason. Mostly bedbound at this point and the things I can do are severely diminished. This isn’t even my main fucking disability. I am medically complex.
I’ve been seeking help for at least 15 years, closer to 20 now. I’ve taken the meds that are supposed to dull the pain. Had all the tests. I’ve done the liquid medical diets. Have admitted myself to emergency department repeatedly in the past, and have had drs/specialists be pretty rude and indifferent about it, telling me it’s psychosomatic, or dismissing me as a drug seeker. I’ve been denied more tests by the gastroenterologists despite the last ones being 6 years ago and an important one being unsuccessful. Seeking a second opinion got me charged out the nose and handballed back. I’ve also been denied a J tube that would feed me abdominally.
This is unfortunately a common experience for chronically ill/chronic pain patients. But I’m going to have another crack at the hospital merry go round on Monday and hoping that having someone to back me up helps. Unfortunately Melbcat will have to go into temporary foster care which is so hard for me. (I can’t explain to her what’s happening, tell her not to be scared or reassure her that I’m coming back. And a run of bad luck means we weren’t even able to get her to her vet appointment yet. Every single time we line one up something happens and it falls through.)
But this chronic severe pain and inability to eat is debilitating, it has been for a long time, and without being dramatic it is genuinely making me consider ending my life if it can’t be controlled. I can’t just keep doing this anymore.
I’m not expecting much though. The most likely outcome is waiting hours in the emergency department, experiencing more annoyed dismissive treatment, doing another round of tests just to find nothing, and going right back to trying to cope with and cover up the pain. Probably will have to come back here and tell you guys that nothing has been found or has changed.
I would undergo surgery if it would help but unfortunately it’s high risk for poor results.
This is the disability/chronic pain experience I’m afraid, at least as a poor/public hospital patient. You eventually go in the too hard basket and start getting blamed. I don’t know where to go to from here. There’s a lot I want to live for but it’s getting so bad that if it wasn’t for Melbcat I would already have done it.
Ps. Please don’t offer me suicide helplines. They’re actually quite terrible.
I’m so sorry to hear you are having such a horrid situation. Hang in there. You can do it. Hope the hospital visit can give you some answers. But also, whilst it is true that sometimes a diagnosis cannot be found, can they work towards some kind of treatment like pain management, diet, counselling to help you manage the situation. If no diagnosis forthcoming, word up the person supporting you to help you ask about how doctors can help lessen the symptoms to improve your quality of life. Perhaps they can refer you to a pain management specialist? A physician? I very much hope you can find some relief.
Thanks. I really hope for some answers as the previous efforts have been very cookie cutter with little result.
I’ve been to pain management clinics before for different issues and left because it wasn’t suiting. (I was unable to manage the physical therapy and was afraid of the prescription painkillers - which incidentally did end up killing my cousin) but am willing to go back and try again.
@melbaboutown @bot001 I can’t offer anything really except empathy, I’ve only just experienced extended intense pain from a herniated disc, and even after 2 weeks I was thinking, if this doesn’t get better, I don’t know how I’m going to keep going, it’s absolutely terrifying to consider years like that. I’m fortunate to seem to be one of the 90% that responds to conservative management but I’m on long term pain meds, and I’m really not sure if the injury is healing by itself or the pain is being masked by the meds.
One thing from your story though, I’ve read that an emerging treatment for a range of gastro issues is gut microbiome transplant, might be worth looking into if you haven’t already as it’s probably not going to be recommended by many gastroenterologists.
Thanks, the empathy means a lot. This is being treated like an ed or a mental problem when I do believe there is something that has been missed.
I’ll keep that in mind.
I really hope for some relief for you
Hey mate I don’t have much to offer but I’m very sorry that you’re going through this and I hope you get through this safely. My DMs are always open if you want to have a chat though :)
Share a pic of melbcat?
Thanks, fingers crossed something gets done.
Here’s one not showing anything identifying or untidy
What a cutie. I’m thinking of adopting a cat pending landlord approval. 🤞
Can you get a patient advocate in hospital? I know some states have rules about patients asking for help after being refused.
I’m sorry you’re going through this, I spent years getting diagnosed with gastroparesis after many dismissals from specialists who didn’t even do the basic test. Was also told it’s stress, anxiety, psychological etc.
Anyway peg/j tubes are fairly standard things if one can’t eat /digest properly, what is their pushback reason on those?
Chronic pain is a hard problem to solve, pain specialists are super expensive and just seemed to push infusions or other medications rather than trying to work out the source. I had no success with them tbh. Have you read “explain pain”? (Apologies if you’re already aware of this and it’s not helpful).
I haven’t read it, thanks for the suggestion.
The specialist tells me that they don’t do it because of risks. My main disability also means poor wound healing that could lead to complications, and I’m being told that it could end up being permanent.
Having read up on it I agree but I am getting desperate.