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.
@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.
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).
baleeted
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.
baleeted
@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.
baleeted
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).
baleeted