I've cut out all triggers but still suffering
Posted , 7 users are following.
Hello!
My GP has sort of diagnosed me with GORD but because of the pandemic i have been unable to get an endscopy despite a referral for one several moths ago. I dont really get heartburn (although it happens a few times a week) but am bupring a lot after food, have contant pressure in chest, thick post-nasal drip, breathing problems (you name it). I understand from reading that this could be LPR. I have been on 3 types of PPI but non of them worked. I have also cut all triggers and am basically living on water and some veg (but non with any flavour!). food which used to be my passion (i have hundreds of cook books) is now basic and bland and i am still not getting a benefit from such a restriction
i am really struggling. I am crying a lot because i am so uncomfortable and no longer get any pleasure from food or drink. There is no comfort in water and Kale, God i hate KALE! i dont think the pandemic helps not only with the lack of access to diagnosis (and the niggling fear of worst case scenario) but just not being able to see people i love for a hug.
I'm not really looking for advice as such - just advice on how to cope with the anxiety and sadness which accompanies this awful condition.
thank you
0 likes, 12 replies
janet07438
Edited
i should add that i dont suffer from anxiety and am fit and healthy (not overweight at all)
joshuapryce1987 janet07438
Posted
Communication with love ones and friends, being affectionate verbally helps. Prayer also helps.
janet07438 joshuapryce1987
Posted
thank you. I'm not religious but have faith (in nature, science and friendship) so will concentrate on those till i can get an answer x
stefanpavel98 janet07438
Posted
Hi, you might find this reassuring because I believe it can be anxiety related / induced or muscle spasm / nerves related as well. I have had this very same symptoms often (I'm 22), even very bitter, acidic taste in my mouth but usually only when I think I have them and I focus on them for a little while. Try to break out of it and see if its correlated in any way to your mood, notice if you feel it more when you might think you're having them, or when your mood is down (especially if you are generally worried about it and you know the symptoms that people feel normally). You probably don't have this when your mood is up or when you do something that gives you positive emotions. I often try to fight it with my brain by forcing myself to believe that I don't have anything and that I am making it up and in a couple of seconds the symptoms go away fully, or I try to redirect the pain and imagine I am feeling it somewhere else in the body. If this works then you should see an immediate pattern between the way you think (discouraged, negative, anxious) with the level of discomfort you're experiencing physically, especially if you consciously focus/ ruminate on it too much. This made the symptoms go away completely for me as it seems that your brain is inducing either muscles spasms in muscles or it triggers the nerves around that side of your body that produces the sensations that you're describing. So notice if that makes it go way, if it its that then its anxiety related, I know it feels very real but there's actual studies that show how you body becomes more sensitive (mentally) and then gives you these sensations or triggers some of the nerves/ muscles that make you feel this way. But please do the necessary medical investigations either way if necessary, even for your piece of mind! Please try it, its been quite a revelation for me! All the best!
janet07438 stefanpavel98
Posted
thanks Stefan. I'm sure you're right that anxiety is making it worse. its a vicious circle, anxiety increases the symptoms which increases anxiety. It becomes hard to be rational. Hopefully once i have some answers from the endoscopy i will better be able to rationale the symptoms (i.e its acid, not disease) and reduce them even if i cannot stop it altogether
megan37739 janet07438
Edited
I'm sorry you are having to go through this. i'm having the exact same problem, everything i eat or even drinking water causes acid, breathing difficulties but normal o2 levels and struggling to eat. I have lost count of how many times i have broken down and felt at wits end and the constant ppis and diet changes make no difference. I really hope you find relief, this is no way to live and I know how miserable it can make you feel
janet07438 megan37739
Posted
HI Megan. I'm sorry you are suffering too. but i am glad you replied because somehow sharing the misery makes it a bit less scary. I've found this forum helpful because whilst people are struggling, the worst fears (the word we wont say) are rarely met. I have an endoscopy this afternoon after 5 months of suffering. Hopefully i will get an non-scary answer and also some help to relieve these symptoms. Have you been through all the scanning and testing? x
megan37739 janet07438
Posted
Sharing the misery does make it so much easier and less scary. You're right, it does seem a lot of people on the forums are finding more acid based problems than anything serious, which is a massive relief! I have a friend who had a very similar problem and she has given me lots of ideas to help until my endoscopy, it was a relief to hear someone who was suffering, especially with breathing difficulties is back to normal. She suggested a wedge pillow, nutritional shakes (to help add more calories and reduce weight loss) and very light foods like jelly, toast and possibly some probiotic yoghurt drinks (as long as they dont trigger the acid). She also takes supplements for gas and bloating, I can't remember the name but it contained licorice. She told me that she believed that her problems stemmed from her digestive system (eating barely anything and then eating too much too quick) as when you don't eat much, your digestive system kind of forgets how to do it's job. I'm not a medical professional but may be completely wrong, but these are just some things that personally worked for her.
I hope your endoscopy goes well today Janet, hoping you get the answers you're looking for! Good luck x
janet07438 megan37739
Posted
Hi again Megan
I've got a wedge pillow (which i randomly keep falling off!) but may play around with probiotics.
The more i read about this the more complex it seems to be and that everyone has to create their own bespoke treatment when the PPIs dont work.
The endoscopy went fine (I think i want sedative on tap - dont really remember a thing) and everything was normal - no inflammation, no damage, no hernia NOTHING. it seems impossible but this forum very much demonstrates its probably quite typical.
at least i can now focus on diet and therapy without fear that something terrifying is lurking.
If i find any good tips I'll let you know!
megan37739 janet07438
Posted
Hi Janet
I have the same issue with the wedge pillow! Seem to always be rolling off or sliding down, but it does seem to help a little bit. It does seem that way and it's very frustrating and hard to handle, I wish we would all receive more medical support.
I'm so glad it went fine and that there is nothing serious going on! I'm so curious as to what causes it though when there is nothing there? Maybe it's a stress response?
Thank you Janet! And good luck, I hope that you recover soon x
jean13689 janet07438
Posted
you may have reflux. They need to do a different test for that. I would recommend investigating that. Endoscopies only show about half of these cases
chrisRd janet07438
Posted
If you've cut all the triggers but are still suffering, you may be dealing with a neurological issue. Look into Irritable Larynx Syndrome or Laryngeal Sensory Neuropathy. When people have LPR symptoms that don't really make sense, it might just be neuropathic pain and some antidepressants can definitely help regulate the nervous system.