u/Mandaxx25

I see a lot of people that talk about their ED as though it's a separate entity and I'm wondering if that's not a good thing to be doing? I keep myself fully accountable and how I behave is by my own choice. People saying 'my ED made me feel that way/do that' makes me think they're separating it from themselves so that they can say it's the fault of the ED not them. I would imagine it would be harder to take charge over recovery until you come to terms with being the only one able to control thoughts and actions and therefore change them?

This is NOT a criticism at all. I could be wrong. I just wondered if it may be counterintuitive to recovery or not.

I recently took a reaction to metaclopramide that put the fear of God into me and ill never touch that stuff again. Because of that, I have nothing to take and now I'm in a flare up and don't know what to do. I feel nauseous but not throwing up yet. Nothing's moving. My dinner is sitting there since 5pm and it's now almost 1am. I have the sulphur burps/farts constantly, full of air and feel terrible. I'm in the UK, a part that has the worst waiting lists in the whole of the British aisles. I was on one for gastroenterology for 7 years. After they diagnosed me with gastroparesis and gave me metaclopramide they discharged me. Now back on the 7 year list if I need seen.

Should I go to A&E (emergency room) and get them to have gastro take a look at me from there? I'm severely disabled, I have EDS. I feel so alone and forgotten about. I also have GORD and Barretts oesophagus. My bowel is paralysed and I have to take a cocktail of natural drugs to go to the bathroom.

I am very disabled and on LCWRA and today received a message in my journal that a man will be calling me on 30th June. No details other than 'Support Call' being the header. I've replied asking what it's about but it won't be responded to now until earliest Monday.

Does anyone know what this is about? I can't work and won't ever be able to. So I don't need any support that they could possibly offer me. Is this a compulsory call? Thanks for your help.

Hi everyone. I don't have any family to go through this, and as I'm quite young (40) none of my friends are experiencing it yet either. I have 8 children. I always had a period that was so regular you could put the kettle on for it coming. When I turned 40, almost overnight things changed. My period became due two days later than it had before. It was heavy one time then barely spotting the next. The symptoms leading up are awful. Way more sad, constant anxiety and just feeling rubbish. I've also started to get hot a lot of the time and night sweats have kicked in too. I used to get those from a medication so I'm used to them but they're horrible. Waking up from a nice sleep to be absolutely covered in sweat and have to get up to sort yourself out. Even the palms of my hands are wet like id dipped them in water.

Just want some ladies to go through it all with and hopefully support you too as best I can ❤️

Hi everyone. So on Sunday early morning past, I woke up around 3am with sulphur gas coming out both ends as it does when I have a flare up. I was due to get up at 8am to go to church with my family. So I took a metaclopramide. I'm prescribed them 3x a day but I don't take them that often because I'm concerned about long term use. Anyway, I went back to sleep. Around 6am I woke up in hell. I had this pain and massive discomfort that felt like anxiety mixed with pure dread and it was all coming out through my stomach. I can only explain how I felt it but I know it sounds stupid. Every time I tried to sleep because I was really drowsy, id jolt awake into this pain/dread awful feeling. It was unbearable. I looked it up and found that its a common reaction and that I have always had a very mild case of it since even I was given metaclopramide in IV in hospital. I would struggle to sleep and jolt awake but thought the side effects were manageable so carried on and it didn't even always happen anyway.

So I found a reddit comment from a lovely person who said long and short of it, diazepam or any benzodiazepines might reverse it if you have EDS (which i do) because we don't make enough dopamine. Just by chance, i happened to have recently just last week been prescribed some to try and relax some muscles i hold too tight. So I took 2 of them and within 20 minutes I had passed out asleep. Hours id spent with this and that fixed it instantly. I was so thankful I found that lady and thanked her profusely even though her comment was 3 years old.

So I rang the gastroenterologist the next day to ask what to do. They said because id been diagnosed and given medication and was happy on it, i was not on their system to be reviewed. Plus the consultant that treated me wasn't even there anymore. So there was nothing they could do basically other than place me back on the waiting list which is years long because its NI NHS which is a disaster. So what do I do now? She suggested I get my GP to write a note on the online database for a gastroenterologist to advise what should be done so ill ask for that when I have my appointment I made. What if they don't do anything? I'm so worried that ill have a flare up and have nothing to use because I am never touching those again.

Maybe a flare would be good and I should just go to hospital and tell them I no longer have any medication to control it? I'm so confused.

I know someone who is under investigation for GP. I have it and am diagnosed but she experiences it differently to me so wondering if you are similar and could tell me yay or nay? My symptoms are: feel the food literally sitting like a stone in my stomach, starts to ferment, get crazy sulphuric gas out both ends that lasts around 12 hours then vomiting and/or diarrhea. Comes in flares that are getting more frequent. Can be triggered by food but mostly appear random. Have to eat only once a day. Vomit if I drink alcohol. Also have GORD and Barretts oesophagus for decades. Have lost 90lb due to gastroparesis but metaclopramide has stabilised it and I no longer lose. I cannot go to the toilet by myself. I have to use a very strong laxative otherwise nothing will happen.

Her symptoms: Nausea if she doesn't eat so she has to eat more frequently to avoid it and this has caused weight gain. Gets stabbing pain in her right side every time she eats. Throws up a lot. Has massive fatigue but thinks this may be caused by cyclizine as it wipes her out but does help with the nausea. She says 'if I eat food that's too rich in flavour, I know I'm going to have the stabbing pains' vomiting and nausea with that as well. She says her bowels are fine.

What do you think? Could it be gastroparesis? She takes omeprazole and i think she says it helps the stabbing pains a little. She has had an endoscopy to make sure she didn't have any stomach ulcers or anything.

Any advice would be great. I don't get stabbing pains so I'm unsure what's common and what's not as I don't know anyone else with GP. I also get the gas and she does not.