Dealing with chronic pain
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Abdomino pherenic dyssynergia

Bluey32Bluey32 Member Posts: 34 Connected
edited June 2019 in Dealing with chronic pain
Hi all I'm.new to scope. This is a great site to talk to people with disabilities. I have been diagnosed with abdonino phrenic dyssynergia. I have not found anybody else with my condition as yet but I'm keeping my fingers crossed. 
My condition basically is that my diaphram is not working how it should be so instead of  being concave it convexes(best way of explaining) so it pushes my organ outwards so I look 7 months pregnant all the time. I have had to stop working as I am in a lot of pain most of day/night. I can't bend down pick up from the floor. I have 2 wear slip on shoes basically there's not much I can do. I have to wear  maternity clothes every day. I have had to go private as the nhs kept on telling me it was ibs. I have tried many diets like dairy free gluten free low fibre high fibre diets as the doctors recommend as they thought it was a bowel disorder. There is not much on the internet about my condition only on the rome foundation site. Is there anybody on this site that has my condition ?
Thank you for taking the time to read my post 💜

Replies

  • Antonia_ScopeAntonia_Scope Member Posts: 1,783 Pioneering
    Welcome to the community @Bluey32 how are you doing today?  I am sorry to hear you what you're going through, so thank you for being open and sharing this with us. I have not found a member with this condition, but if they are, they will be sure to reply to you. How has the treatment been since going private?
  • Bluey32Bluey32 Member Posts: 34 Connected
    Hi Antonia all  they have done is try me on different tablets. But my belly is still big. My pain is bearable. My mobility is getting worse now. But I'm still smiling x☺
  • Antonia_ScopeAntonia_Scope Member Posts: 1,783 Pioneering
    Hi @Bluey32 thank you for your reply. I see, glad to hear the pain is bearable, sorry to hear about your mobility. I am not a medical professional but I saw a page about physical therapy.- has you Doctor suggests this to you?

    Happy to hear you are still smiling, smiling right back at you. :) 
  • glasswendeglasswende Member Posts: 1 Listener
    Hi I have this! I’ve been wearing only maternity clothes for the past 6 years but have never been pregnant. I’m 29.

    This condition is so horrifically painful! I also get stabbing pains from dystonia that causes my intestines to spasm and twist if I eat. 

    I’ve tried all sorts of diets, measuring my abdomen 3 times a day and charting the results. After analyzing the data I found that I distended 11” every day with absolutely no correlation to what I ate. Even water caused it.

    My intestines are fully paralyzed as I have very severe hypermobile EDS, POTS, MCAS, viral encephalitis, multiple organ failure, multiple bacterial infections, and dysautonomia. But I was able to go to the bathroom completely normally for 7 weeks while on anti-Parkinson medication. I don’t have Parkinson’s but I do have severe full body dystonia as a complication of EDS. It was like a miracle, but then I developed complete resistance to it. Unfortunately, even with normal bowel movements there was no effect on the distention.

    I have found that the diaphragm is causing a type of visceroptosis, crushing all the organs down and out. The pelvic floor dysfunction really doesn’t contribute to the pregnant look. Doctors think it’s the pelvic floor and suggest treating that, but it’s actually almost entirely caused by the diaphragm.

    I did 8 months of biofeedback therapy for pelvic floor dysfunction, but it didn’t work at all for me. I was told that it often fails in severe EDS cases. I dislocate my hips every time I try to walk so there’s no way my pelvic floor will ever relax.

    My abdomen is sometimes totally flat in the morning and then 11” distended by night. My pelvic floor is always in spasm. This tells me that the pelvic floor isn’t the main factor. For me it happens as soon as I eat or drink. Having food in my stomach is causing the diaphragm to crush my organs.

    I haven’t found any doctor who knows anything about treating the diaphragm :( If I ever find one I will come update here 
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,940 Scope community team
    Thank you for sharing all this @glasswende. Please definitely keep in touch! :smile:
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  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Welcome @glasswende and thanks for sharing this with us!
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  • lulu22lulu22 Member Posts: 1 Listener
    Hi @glasswende.  I’ve just come across your post and I look exactly like you! Just been diagnosed with APD after 5 years of suffering and going from perfectly flat to 7 months ‘pregnant’ seemingly overnight! I would love to get in touch if there’s anyway of that happening? Let me know 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Welcome to the community @lulu22
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  • RubberbandgirlRubberbandgirl Member Posts: 1 Listener
    edited January 2020
    Have you all read an article in the New York Times, called "The Gymnast's Big Belly"? There are two parts, one is the problem, the second is the answer. It covers this very topic. The go to doctor in the USA for functional disorders is Dr. Drossman, in North Carolina He DOES NOT take insurance, (that is doable) and he wants all my records in paper form (that is the hard part). I will most likely make a visit to him soon. I am on Linzess, Bentyl, and Lactulose, this helps with the pelvic floor disorder. I too, am very swollen, and hard. It feels like I am very pregnant, and it is very tiring. Drossman said in a vid that I watched that something called "re-breathing" will help, as well as a "neuro-modulator". He also mentioned some treatment in Barcelona, Spain.
  • Nicole19Nicole19 Member Posts: 2 Listener
    Hey guys! I have recently been diagnosed myself and wanted to check in on any treatment updates?
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Welcome to the community @Nicole19! Really glad you found us. How are you doing today? :)
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  • thisboyiscraigthisboyiscraig Member Posts: 2 Listener
    Hi, I'd like to throw my hat into the ring on this one. I bought a book last year called The Belly Whisperer and BINGO, I identified APD in the first ten minutes of reading after TEN YEARS of being told I simply had IBS. Not finding a solution has led to me struggling with depression and anxiety so I really do empathise with you all. Now we just need to find someone in the UK with the knoweldge of this because the NHS and GPs just don't know about 'functional' issues like this. So, has anyone made any progress on this, or do we all have to go to the USA?
  • jlmarlowjlmarlow Member Posts: 2 Listener
    Hi everyone, 
    I am starting physical therapy soon and this is something we are going to address. My belly looks just like yours, OP. After over a decade of being told I was just gassy, every diet imaginable, many diagnostic procedures etc. I think my current practitioner has narrowed it down to this. I will pass along any information as it comes. 
  • Nicole19Nicole19 Member Posts: 2 Listener
    I’m also starting physical therapy this week and will keep you informed!
  • thisboyiscraigthisboyiscraig Member Posts: 2 Listener
    jlmarlow said:
    Hi everyone, 
    I am starting physical therapy soon and this is something we are going to address. My belly looks just like yours, OP. After over a decade of being told I was just gassy, every diet imaginable, many diagnostic procedures etc. I think my current practitioner has narrowed it down to this. I will pass along any information as it comes. 

    Hi, I've been speaking to someone in the US who is going to put me in touch with someone in the UK but if you have any success, please do let me know and good luck :)
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Welcome to the community @jlmarlow and @Nicole19! I hope physio helps you both.
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  • jlmarlowjlmarlow Member Posts: 2 Listener
    hello everyone, I have some updates: 

    @glasswende covered a lot of what i'm about to say above but here's what i've learned.

    my physical therapy was postponed because of Covid, but I've finally had a few sessions with a wonderful PT that specializes in pelvic floor issues. to nobody's surprise, I have diastasis recti (separation of the abdominal muscles) at about a 4-5 centimeter gap 😬 this is caused by tightness in my obliques  I also have extreme tension in my diaphragm, which renders it immobile.

    i'm sure this is not new information for some of you, but just in case:

    after lots of independent research and long conversations with my PT we determined that the issue is my inability to relax any of my core muscle groups, throwing off the synergy.

    ideally, when you inhale, your diaphragm contracts and moves down, to allow room for your lungs to expand. when your diaphragm is contracted, your pelvic muscles should be at ease. on the flip side, the pelvic floor muscles rise when they contract, pushing air upwards to aid in forced exhalation. if you're always tense, these processes fall out of rhythm and squeeze your abdominal contents like this: 

    ⬇️
    😭(this crying emoji is your guts)
    ⬆️

    (it's mostly the paralyzed diaphragm that causes this, so that's my biggest focus at the moment. but the pelvic floor does play a part)

    this is common in people with a lot of trauma in their past, especially during childhood. the shallow breathing associated with the "fight or flight" panic response becomes the primary mode of respiration, and the diaphragm is unable to do it's thing. accessory muscles that are not meant to be engaged in that way for too long become hypertonic. 

    so my goals in PT are:
    -to train the tense muscles to relax, which is counterintuitive to how i've been living my entire life (who knew!)
    -focus on diaphragmatic belly breathing, as opposed to the shallow breathing i'm accustomed to 
    -release my diaphragm with gentle pressure massaging
    -to stop straining my abdominal muscles with crunches and other strenuous exercises 
    -eat small, softer meals that don't overfill my stomach, because part of the problem is the hypersensitive somatic response to any change in abdominal contents 

    (I also should add that I have a congenital condition called Beckwith-Weidemann Syndrome, and one of the symptoms is abdominal wall abnormalities, which are supposed to sort themselves out in childhood but mine never did. It has been suggested by an endocrinologist that I have EDS as well, but the hypermobility and connective tissue problems can also be attributed to BWS. at this point I don't care what the reason is, I just want to focus on breathing better so I don't have to carry this massive belly around) 
  • Tori_ScopeTori_Scope Community Team Posts: 3,210 Disability Gamechanger
    Thank you for sharing this update @jlmarlow :) 
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  • chiariedschiarieds Community champion Posts: 6,896 Disability Gamechanger
    Hi @jlmarlow - thank you for the update, & I'm pleased to read that physio should be helpful. I'm a great believer in diaphragmatic/abdominal breathing, which I often recommend, as it's something I used to teach when I worked as a physio. I also use it myself. Keep up the good work. :)
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