Tips for life with achalasia

Posted , 9 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi. I'm new here, and I'm sure I could find this info by browsing through a ton of other discussions, but who has time for that? smile I'm currently dealing with achalasia, or at least that's what my doctor suspects. I'm waiting for test results to come back to let me know for sure. As you all know, it's pretty terrible trying to get through the day with these symptoms. And my symptoms seem to be getting worse, with more frequent spasms, more difficulty swallowing, more late night regurgitation episodes, and it's starting to get pretty painful to swallow anything (until a week ago I'd had no pain, just discomfort). I've been on a diet of mostly smoothies and yogurt the past couple weeks, but I'm starting to have trouble even getting those down. I've lost about 15 pounds in just the past month. Now my biggest problem is that the specialist I'll have to see in order to treat this can't see me until June 20, and then who knows how long after that first meeting it'll be before anything is actually done? It's really starting to break me down. It's triggering my depression pretty hard, and it's effecting my performance at work because I have no energy. Can anyone out there please give me some pointers on how to make these next few weeks more bearable? Thanks so much.

0 likes, 31 replies

Report

31 Replies

Next
  • Posted

    Living with a person with achalasia is my only experience and everything you say happening to you has happened to my wife. What I do know is stress seems to be a trigger for some of the symptoms. I would guess that the sphincter muscle that allows food to go into your stomach has tightens up so it makes it more difficult to get food down. The only way I've seen to correct that is thru dialation, Botox injection or surgery. I know her best days when should could at least eat soft foods or liquids were more stress free which is hard especially when you suffer with achalasia. She was prescribed lorazapam and an antidepressant which seemed to help. I know in the past when I would have to take her into the ER they were almost forced to do something now rather than wait. It's a tough situation and I will pray for some relief. Don't give up and keep up the good fight.

    Report
    • Posted

      While, understandably, most of the posts here deal with how to manage achalasia, the impact of stress and emotions on the disorder has not been ignored.  In fact, a correlation has been suspected for quite some time.  Just how this can be reconciled with other findings that achalasia is an autoimmune disorder is a bit of a difficulty, IMO, but that may be the fault of my imperfect comprehension.  Your wife's symptoms lessening on days of little stress makes sense to me.   I just read a Brazilian study that concluded that strong emotions could even trigger the condition.  Quote:  "Surprisingly, for more than one time, the patient companion wanted to know details of the work with the interviewer and many were categorical in stating that the patient was going through major emotional problems before they develop the disease. In addition, there are very specific cases where the patient started reporting symptoms after the death of very close relative, parents' divorce, separation from spouse and to long-term relationship. With this works contribution, the emotional factor precedes the disease appears to be of great relevance. Surely this still depends on further study for definitive characterization of their importance in this disease."

       

      ?This is from 2010.  I'm not sure that the etiology of achalasia will ever be precisely pinned down.  Regardless, stress, anger, saidness, is not about to make anything better. 

      Report
    • Posted

      I believe you're right on with it. I've said all along that I feel that stress and anxiety or constant worry triggers some things associated with the immune system and plays an immense role in our symptoms worsening. Stress will do all kind of things to the body. And some can only take so much of it till they have a full blown meltdown or breakdown. I know for a fact that stress causes lower abdominal symptoms and probably certain diseases in whole. It makes our blood pressure go sky high. This isn't suspicion it's a fact. I am 100% convinced that stress plays a big role in how well one does with their Alchalasia. Does it cause it? Who knows? But one thing I know is that it doesn't do it any good.

      Eventually I feel there will be a direct connection of stress playing a role in its etiology. So much is not known because there's not tons of research being done on it due to it affecting 1 of 100,000 annually. So, it may be years, if not decades before more is known about this rare and relentless disease.

      DJRN

      Report
    • Posted

      Good response, DJ-RN.  The thing is, decades ago the experts were concentrating on the correlation between achalasia and emotions but I am formng a suspicion that the patients, themselves, rejected this, leading to them simply being put on the operating table without further ado somewhere along the line so that it became routine.  Most people, it would seem, when getting alarming and very uncomfortable symptoms would rather not believe their mental or emotional estate has any bearing on it.  Also, they want immediate relief, which counseling can probably not give them.  A case in point is here:

      https://patient.info/forums/discuss/achalasia-10-years-post-op-26141

      ?What seems to have been a young man was presenting some of the symptoms of achalasia.  For reasons he did not supply, he was referred for psychiatric evaluation.  In his view, of course, he was simply misdiagnosed.  However, he does make it plain that his relationship with his girlfriend broke up and appears to be attributing that to his physical symptoms and weight loss.  One has to wonder if the floundering relationship might have aggravated or even caused the symptoms in the first place because a strong bond between two people does not simply deteriorate because one becomes ill.  The young man subsequently followed his ex to Vienna, where a doctor told him he needed an operation as he had achalasia.  Following the plot of a familiar tale told here, that fixed him for a time but then he required another procedure.  One has to wonder [or at least I do] if this person and others could have avoided these body altering procedures by recognizing and addressing the stressors in their lives.  Can some situations actually destroy the neurons in an individual's body and cause sphincters to stop operating properly?  According to those Brazilian doctors--yes.  Or at least play a large part.  It did not take me long, when researching achalasia, to see that it has its mysterious aspects and so a fact gathering Virgo like me wants to know more,

      Report
    • Posted

      Is it just me or does this site actually change the spelling of some of the words we type?  I know I typed "state" instead of "estate"--but there it is.  And this is not a lone example.

      Report
    • Posted

      I feel that they edit and do whatever in the hell they choose to do. About 20% of my msgs on my thread have mysteriously disappeared.

      DJRN

      Report
    • Posted

      Thank you hun. I truly believe that emotions, stress, worry and anxiety either causes or exacerbates (did I spell that correctly, lol?) it or both. Great response to pickup on!

      DJRN

      Report
    • Posted

      I don't think there's a person changing the typing but possibly some built-in program.  I have noticed this happening in PMs, too.  Just recently, I know I typed "develop", but it came out "development".  I never used to write that as a verb but maybe my fingers have decided to think for themselves and leave my brain out of it rolleyes

      Report
    • Posted

      I've noticed too that many of my older posts on my thread are somehow missing.

      DJRN

      Report
    • Posted

      You're right. They are.  However, as far as the discussion is concerned, it may have been that young man [whose case I pointed to]  considered himself misdiagnosed because he was referred for psychiatric evaluation because it was believed he had an eating disorder.  I'm sure this happens very often.

      Report
    • Posted

      In a long thread like this one, it can be difficult to find the latest contribution.   Sometimes the reply to a particular post comes out immediately after, say, no 23 in a total of 87;  sometimes it comes at the end and becomes, say, no 88.   It might just depend on which green reply icon one clicks?   I am not saying that some do not disappear or get diverted into being moderated.   Some of it must be in the way that the programme is designed perhaps?
      Report
    • Posted

      Many of DJ's posts in the thread that he started about achalasia actually are marked "deleted by a moderator", sometimes several in a row.  As for me, I have been looking at some of the older threads on the topic and it struck me how swift the onset of achalasia was in several cases where the poster made a point of describing that.  One man thought he had a good life going when one day he went somewhere with his brother and suddenly could neither eat nor drink his favorite lager beer.  And so matters continued, with him losing many pounds [or stone in his case] and the good life becoming a constant trial.  I am new to the subject of achalasia but I find it strange that this disorder could begin to manifest itself in a single day in such a dramatic fashion.  But I don't doubt the testimony of the sufferers.  Can anyone else here recall such a sudden onset?  I realize some of you have been afflicted with achalasia for many years and may not even remember precisely how it began.  I also wonder what happened to Stephen.  I hope he did not stop being able to swallow even liquid and had to go into the hospital. 

      Report
    • Posted

      Yes, indeed. Many of my posts were deleted due to being out of the norm for Patient's rules. If a post is deleted, I think they owe us the common courtesy to point out which one it was and what was done out of their guidelines. Otherwise, itwill simply keep happening. Don't just put "deleted by moderator" and not tell me specifically what I said that was wrong. Again, common courtesy. As far as one developing Alchalasia suddenly, I do believe that one might suddenly realize that something just isn't right. But, I do not believe one can suddenly up and develop full blown symptoms that takes time in others to progress. Granted, it has to start at one point, but again, not as sudden as one might feel. I've been aspirating for 15 years, but it's just been within the past 8 months where I started to develop bouts with aspiration pneumonia. I don't feel that poster was trying to mislead anyone or his condition. I just think he got caught up in the moment and exaggerated his symptoms somewhat. But, I'm not him and could be wrong. You are a very good listener and pickup on certain things that others may not. You are usually spot on with your posts. Btw, last night was number 13 in a row where I haven't aspirated. Why I didn't think to purchase an adjustable bed over the years is beyond me. I just pray that it continues to not cause me too. The fear of your airway being totally occluded is one of the most horrific things one could experience. And I did it at least 5 out of 7 nights week after week, year after year. I plan on following up with Pulmonary soon because I suspect there has been damage done as a result of it. About a year ago, I had a PFT (Pulmo Fx. test) and they said that I had stage 1A emphysema. Now I'm doubting that diagnosis. I think it might very well be scar tissue or perhaps problems within the interstitial membranes etc. But I'm just speculating. It could be a number of things. I just know that aspiration can cause problems such as those. I get SOB and DOE easily. I hope all of you are doing well!

      DJRN

      Report
    • Posted

      Perhaps so Alan. I just know that there are about a 170 posts on my thread, but if you scroll both page 1 and 2, it's easy to see that 170 aren't showing. In fact, I remember some topics that aren't even there now. Who knows? It's all good. I did however ask the moderator to delete a few posts that I felt were misleading. They did without hesitation and I appreciated that. I hope you are well my friend. Ty again!

      DJRN

      Report
    • Posted

      You must be right.

      ​There should be some route, somewhere, to have the issue clarified with the moderator, but I do not know how to do this.

      Report
    • Posted

      I don't either Alan. It would be helpful though to be told in writing what a certain post was deleted and fell outside of Patient's Guidelines. You have a great weekend!

      DJRN

      Report
    • Posted

      Well, this one will but I'm frustrated enough to ask--am I the only one who has so much difficulty using this site?  Perhaps it's allergic to Windows--I have no idea--but most of the time I can't even type in the blank reply space.  Right now, it is working, but many other times I have to write my post in Notepad and then paste it in.  It's like my keyboard loses a connection with the site,  When I type a word, only some of the letters appear or the text gets stuck and I can't continue writing.  Quite often a  "chime" [for want of a better term] goes off rather loudly in my computer when I type on this site.  Perhaps it's saying "Quit now.  You're not properly qualified on this topic!  Get lost, blondiet!" twisted?  I don't mean just this thread but all all the ones I follow. 

      Report

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up