Can somebody help me or give me advice please?

I have recently had a Monemtry Test and I have been advised that I have Achalasia? I haven't been able to eat anything other than suck chocolate or eat Ice cream since last August (2014). My gp was convinced the problem was in 'my head' but I have now been proven right and I do have a problem with my Oesaphagus and my L.O.S which will not allow food into my stomach. It only opens to a tiny hole which will allow liquids through. I am waiting to see my consultant after the test but I am concerned about what it means for my future?

I am 5ft 3ins and weigh 71/2 stone I am wearing size 6 jeans and they are too big, size 8 clothes are too big and I can't put weight on at all I am losing it, what can I do.

Has anyone suffered or is suffering from this condition that could give me any advice?

Please help

Diane t


20 Replies

  • Hi Diane

    Sorry to hear about your problems.

    I attach the link to the Achalasia page on our the OPA


    Please contact Amanda Ladell the Group Co-Ordinator who will help and advise you.

    Best wishes


  • Hi OPA

    I ha ve looked at the link you sent me and the info has been really helpful. I also looked at the notes of the last meeting which were also really interesting.

    I am going to print them out and discuss them with my consultant when I see him in a few weeks.

    Unfortunately I live in the north west and the meetings are all in London because I would really like to attend one if I could.

    Thank you for replying to me your help means a lot to me.

    I will get in touch with Amanda to see if she can send me any further information about the illness.

    Thank you

    Diane T

  • Hiya. I too was diagnosed with Achalasia. I fought for a year with Doctors. Was told it was panic attacks, stress, depression etc. Eventually after a year of suffering I was diagnosed after a manometry. You may benefit from a dilatation, which is a stretch. I was at a bad stage when diagnosed so nothing really helped me. I underwent a major operation 2012 (oesophajectomy). Each sufferer is different so can't tell you what will or won't work for you. Achalasia is an uncureable disease ime afraid. Something I wasn't really aware of. I thought I would be cured. That is not the case. Before you make any big decisions do lots of research. Where are you from if you don't mind me asking x

  • Hi Pferries31

    Thank you for your reply, I am from Manchester in the UK. It has been a very long and hard journey for me to finally get the results.

    I suffer from chronic pain in my lower back and started using morphine patches for the pain last July (2014) and immediately I noticed that my appetite disappeared which is a side effect of the medication but then when I tried to eat I wasn't able to, it felt as if the food was stuck in my chest like a tennis ball and I had pains in my chest, right arm and shoulder blade as if I was having a heart attack? I went to my GP and he just thought it was anxiety/ depression because of my pain. For months this went on I was in agony, but it was always the same Anxiety, forcing anti depressants on me until eventually I saw a different GP who said I could have gallstones so she organised a scan and blood tests. Nothing showed up so I was distraught but I plugged away until my GP eventually gave in because he could see the state I was in and he referred me to a consultant who organised an emergency duodendoscopy because he thought I had cancer. Anyway that was clear so I was even more distraught, not that I wanted cancer I just needed to know what was the matter with me.

    At the same time I was sent to see my pain specialist to see if it could be the pain relief I was using, immediately he decided I was ' depressed, anxious, suicidal, in need of mental health intervention. I actually cried in front of him, these people just didn't understand and I started to feel as if 'it really could be in my head'

    When I went back to my gastro doctors he asked me again about my symptoms so I repeated everything and he said ' DONT LET THEM MAKE YOU THINK IT IS IN YOUR HEAD IT ISNT WE WILL FIND OUT WHAT IT IS' I was so relieved and happy He then sent me for the Monemetry that I had done on weds and also to a dietician because of my weight, even tho my GP had done nothing about it. I had the test and here I am!!!!!!!

    I was over the moon on weds, I knew what was the matter with me so I could fix it couldn't i, but now I am really beginning to panic becasue I am reading such varying results of people that have had surgery and I don't really know what to do.

    Apparently my LOS is only opening to a tiny hole that will allow liquid through slowly, the pain I have is down to my 'peristalwaves' or something.

    I don't vomit because I don't eat, I can't eat without being in pain.

    Please can you share your experience with me, I know you will be honest with me, the forums I have read have been frightening and I'm not sure if I am doing the right thing reading so much information?

    Sorry if I have wrote too much, I just want people to understand how I am feeling and that i am scared.

    Take care


  • I sent you a private message. Did you receive item xx

  • Hi

    Yes I did I will reply to you now

    Thank you


  • It is good that you have had the proper tests for a diagnosis. There will be things that can be done that will improve your situation, but meanwhile, concentrate on taking in nutrition with liquid drinks that you may be able to obtain from your GP on prescription. You can mix other ingredients with the ice cream, or whatever you take that will go down. There are some recipe ideas in the OPA booklet 'Nutrition - Swallowing when it's difficult'

  • Hi Alan

    Thank you for your reply, the OPA page has helped me a lot.

    I have seen a nutrionalist through my consultant and he prescribed thiamine and vitamin b which I have finished now, I don't feel much different to tell you the truth. He also gave me Complan shakes to have that I can mix with cocoa or ice cream to make smoothies but I actually struggle to get them down and if I do I feel uncomfortable and I feel pain in my chest for about an hour, I presume this is when my oesphagus is trying to push it into my stomach?

    I am having trouble with my gums though, I have advanced gum disease now, I found this out last week. This has only happened since last June when I last had my hygienist appointment, I think I could be down to malnutrition because it has more than doubled in the last 6 months and my dentist was astounded by that amount of detioration. He said it wouldn't be the sweets or chocolate I have been eating it would probably be the lack of nutrients?

    I have read that much information over the last few days I can't sleep it is making me have horrible thoughts and making me really nervous about my future.

    I would really appreciate it if you could guide me to the best places for 'real information'. Everywhere I have read the treatment is always the same, toxin injections, balloon dilation, surgery but I am not sure about any of it?

    Thank you


  • 'Real' information comes best from a specialist surgeon who is familiar with your own situation.

    I think I wold try and get a test for various minerals and other levels so that you can have some kind of nutritional supplements. Some of them might be able to be absorbed under the tongue.

    Acid reflux can affect tooth enamel, but if your lower oesophageal sphincter is clamped tight shut, that is much less likely.

    Yes, the food sticks in the oesopahagus and creates a heavy 'bag' that pushes it out of shape.

    There are some nutritional drinks that are liquid rather than milky/creamy. A pharmacist might help with this.

    This will sound difficult for you, but whatever you do, there will always be an element of tension, anxiety and nerves making things worse. So trying to find some means of relaxing will be of benefit.

  • Hello Diane,

    You are NOT crazy. In June 2014, I was diagnosed with Achalasia. I remember saying, "Ach-a-what?" It is a progressive disease and for me, started around 2009 with severe chest pain, mimicking a heart attack, and then slowly over the next five years, brought me to the place where I couldn't swallow food or liquids. I had the POEM surgery at The University of Virginia in Charlottesville, VA, in January 2015. I can now swallow and digest my food. I write about my journey on Just search ACHALASIA in the post search box. I highly recommend the POEM, just make sure you have an experienced team/surgeon on board. I am sorry for your diagnosis, but you can live with it. Hope and help is available. Blessings on your journey.

    Janell Rardon

  • Hi janell

    Thank you for your reply, it means a lot to me. I will have a look at your blog.

    I am in the UK and I don't think we do the POEM procedure here.

    How are you now, do you still have trouble eating or are you ok now.

    did you have any other procedures before the surgery, I couldn't really find anything on your blog about your condition, sorry?

    Please let me know

    Take care


  • Hello Diane,

    Please see My book is a free download and has a wealth of information on proper diagnosis and treatment. I have Achalasia and had an esophagectomy in 2010. I am doing quite well and have made a tremendous recovery. See:

    My book examines Achalasia from both the standard medical approach to diagnosis and treatment as well as a functional medicine look at solutions. These solutions have served both me and others quite well. I only wish I knew about them 30+ years ago.

    I hope this helps you and I am happy to answer questions.


    Dr. Steve

  • Hi Drsteve

    I have requested to join your page on FB and I have also downloaded your book into my IBooks, I will read that one later.

    You are the same age as me and you sound as if you are doing ok.

    Unfortunately I don't think I am in the same position as you are re treatment options. I live in the UK and our hospitals and NHS don't work the same as yours in America.

    I will ready our book though and take on board as much as I can, forewarned is forearmed as they say

    thank you


  • Hi Diane,

    The treatment options include much from the functional medicine world. The entire point is to avoid the hospital/medical system (except for an annual exam: barium swallow/endoscopy).

    The medical system offers us nothing that addresses the actual disease itself. Much more in the book.....

    Best to you!

  • Hi. I live in the North West Wales and like you was given the run around for more than 3 years. This was in 2003. I came up against a stubburn gastro doctor who was hell bent on me remaining on tablets. Can you imagine being told quite bluntly that there was nothing that he could do but prescribe one type of tablet after another. I was very depressed by then. I contacted the OPA and as I was desperate for advice and help I was reminded that according to the Patients Charter I was entitled to a second opinion. David Kirby who was the then chairman of the OPA gave me the name of a very experienced thorasic surgeon in the Liverpool Heart & Chest Hospital and gave me his contact details for his secretary. This very experienced thorasic surgeon is Mr Richard Page who still is a Consultant Thorasic Surgeon at the hospital and advised to have a chat with my GP and ask him to referre me to Mr Page for a second opinion which he did.

    Consequently I was seen in May 2003 and was advised that since I live over 80 miles away I was to be admitted for a few days for tests to determin my diagnosis. Two weeks later I was admitted for three days during which I had the Manometry test done, blood tests, the 24hr PH test done and I had a gastroscopy done to determin what was going on in my oesophagus and stomach. Finally three weeks later when all the results were back and I saw Mr Page in clinic, I was told that I had Rigorous Achalasia and that since I could hardly swallow, my oesophagus had swollen to the size of a football and was pushing my lungs to one side and was pressing on my heart. He advised me that he would first try the Heller Myotomy where they open the chest and cut through the oesophagus wall from the outside until nearly all the way through and that should give me relief of my symptoms. He was right the operation gave me relief for about six months then the swallowing problems started coming back big time and if anything worse than before. He said that I needed a temporary PEG feeding tube fitted and that he would see me in clinic a month after that.

    A week later as an emergancy I was fitted with a PEG in Bangor Hospital and saw Mr Page a month after that. By now my weight had plummeted down to under 7 stone and as a full year had passed since I had the Myotomy and taking into account PEG feeding alone wasn't enough. So he then offered to do the Oesophagectomy in a month's time after attending a pre-op clinic for a raft of tests to see if I was healthy enough to withstand the Oesophagectomy which would take him on average 10 to 12 hours depending on what my insides were like taking into effect that I had already accumilated scar tissue and adhessions from the Myotomy a year earlier. I was admitted for the Oesophagectomy on Monday the 24th of October for initial tests including a Gastroscopy, blood tests, lung function tests, x-rays and a cardiogram, all needed pre-op. My operation went ahead on Thursday the 28th of October, 2004. I was in hospital for 11 days. And then of course there were up's and downs afterwards but if I hadn't had the operation when I did then my health would have been very much worse two years down the line and too fragile to withstand the enormaty of the Oesophagectomy. If you have any questions then feel free to contact me with questions.

  • Oh my word you have been through the wars haven't you.

    I think I could have the vigorous type as when I try to eat anything and I mean anything as in anything that has a consistency thicker than milk or melted chocolate I suffer pain in my chest, or I'm not sure if it's in my back or between my shoulder blades. If I continue I feel as if I can't breathe and I have to take in really deep breaths to inflate my lungs. I am also having trouble with my voice going croaky and having to clear my throat. I just feel that my symptoms are increasing a few months ago I was able to eat Jaffa cakes if I dipped them in coffe but now I am not even able to do that, I have tried eating little sponge cakes dipped in hot drinks to soften them bu I can't even get that down now. Tried some crime caramel desert but couldn't handle that either.

    I am hoping that once my consultant sees the report from the test that he wants to see me straight away because I need help now.




  • Hi Diane,

    I can't believe that list of symptoms you listed! Exactly mine at this moment: pain in chest, back, in-between shoulder blades: feel like I can't breathe and I have to take deep breaths to inflate my lungs, croaky voice and constantly clearing my throat!

    Give that I have a rare auto-immune condition called Behcets, and that I have had Pericarditis (inflammation of the lining of the heart) and a Pulmonary Embolism (blood clot in the lungs) in the past, when I started feeling pains in the chest/back with breathing difficulties, I though it was one or the other again.

    So I went to emergency, and here I am in hospital. I have had an x-Ray, a CAT scan, general ultrasound, an echocardiogram, a heart stress-test, and a bronchoscopy. Nothing has showed up. So I was reading on the Internet (as you do) and thought maybe it was AchalasiA.

    At the beginning I didn't think to mention my problems with swallowing, sharp pain when swallowing, acid reflux etc, because I though I it was my heart or a blood clot - it didn't seem worth mentioning. I have to say that although those things were bothering me, they weren't so bad.

    The very first article about AchalasiA said that studies have shown that it may be auto-immune condition relating to the nervous system. Behcet's has a nervous system component. So that's why I thought Achalaisia seemed a possibility. However the symptoms didn't quite match up to what I'm feeling right now.. Until I read your post.

    Were these symptoms your Achalasia?

    I am having an Endoscopy tomorrow. I couldn't quite say to the specialist "it is possible it is Achalasia and could I have barium drink test" because they often don't like self-diagnoses. So I don't know the Endoscopy will show anything. As I am going to see my Rheumatologist in a few days time, I'll take it up with her is the Endoscopy doesn't mention the possibility.

    Anyway, I hope you are doing better. Have you thought of eating thin soups and vegetable juices instead of sweet drinks? If that research is right, and it is auto-immune related, diet can play a huge part. A lot of people with auto-immune conditions report that sugar seems to set off flares.

  • Thanks for the chat last night Diane. Was great speaking to someone who knows how it feels. Thank god for sites like this, think I would have given up long ago. Least on here we are not alone and don't feel like we r crazy or imagining things. Would love to meet up with fellow Achalsians one day. Hoping your consultant gets in touch asap. Think you have suffered enough. Take care xx

  • Hi Pauline

    It was lovely chatting to you too, it meant the world to be able to actually tell someone how I was feeling and them actually understanding what I was saying so thank you. This site is brilliant it is full of lovely people that are willing to give up their time to try and help or advise people that are in the same position as them without even knowing them personally, amazing.

    I will keep in touch and I will defo let you know when I have been to see my consultant about the test.

    Speak soon, take care and eat lots of chocolate for Easter - Yumm yumm



  • I had op last year fine now don't worry

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