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_AlumniAntonia_Alumni Scope alumni Posts: 1,781 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_AlumniAntonia_Alumni Scope alumni Posts: 1,781 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 Posts: 7,998

    Scope community team

    Thank you for sharing all this @glasswende. Please definitely keep in touch! :smile:
    Senior Community Partner
    Scope
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Welcome @glasswende and thanks for sharing this with us!
    Scope

  • 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: 10,653 Disability Gamechanger
    Welcome to the community @lulu22
    Scope

  • 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: 10,653 Disability Gamechanger
    Welcome to the community @Nicole19! Really glad you found us. How are you doing today? :)
    Scope

  • 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: 3 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: 10,653 Disability Gamechanger
    Welcome to the community @jlmarlow and @Nicole19! I hope physio helps you both.
    Scope

  • jlmarlowjlmarlow Member Posts: 3 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 Posts: 5,002

    Scope community team

    Thank you for sharing this update @jlmarlow :) 
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  • chiariedschiarieds Community Co-Production Group Posts: 9,129 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. :)
  • samsam Member Posts: 4 Listener
    Hi, I’ve just been diagnosed with APD and have been struggling to find anyone in the UK who can help. I’ve started physio but seems to be very pelvic floor based but because I don’t get the constipation alongside does that mean it’s more diaphragm related? 
    Has anyone had any luck so far?
  • Fm611Fm611 Member Posts: 1 Listener
    edited April 1
    Can anyone recommend a good physio in the UK for this condition as I have self diagnosed after reading the bloated belly whisperer. 
  • jlmarlowjlmarlow Member Posts: 3 Listener
    I'm back with another update, well more like a few suggestions to consider that I am in the process of investigating. I don't know if these are related to APD per se, but mysterious chronic severe distension may be a symptom?? just sharing in case it is helpful to anyone out there.  

    1. has anyone here been screened for a blood cancer such as leukemia or lymphoma? I have seen a few photos of swollen bellies caused by lymphoma that starts in the bowels. it often takes years to show up in a blood test. my PT suggested I get a liver panel done because she could feel my enlarged organs and I actually have elevated cells across the board. something to think about. 

    2. if you are tongue tied/have limited range of motion of your tongue due to your lingual frenulum being too tight or thick, that may have an impact on muscular coordination in digestion. I have a consultation to get my tongue tie corrected. it probably won't do much in the way of correcting APD but I was surprised to learn just how critical of a role the tongue plays in all sorts of functions.  


  • BGlondonBGlondon Member Posts: 2 Listener
    Hi everyone,

    I am new to the group and forum. I just wanted to share my story...

    I was first diagnosed with gynecology issues such as endometriosis and fibroids. I had a laparoscopy back in 2019 and two months after my belly swollen and I started feeling I was pregnant... I have spent 2 years around million doctors and people who thought I was exaggerating or that everything was in my head... I fell really lonely and depressed as my constitution is quite thin, so obviously people thought I was just complaining where others have a "fat" belly. But my problem was the pain, the burning sensation and constant pressure in the lower abdomen... I thought it was endo and started to get worried again which made everything worse... My gp basically laughed at me with every single word I said, thinking I was just being dramatic and that I could not ask for another laparoscopy just because "I feel bloated" anything showed in scans, ultrasounds, MRIs etc...

    Finally I found a good gyne back in Spain (my country) who said all these symptoms were not endo related 100% secured. He referred me to a physiotherapist who was very very good at diagnosing weird stuff. She said I had congestion, contracture and a lot of pressure... She said I had also gastrointestinal problems such as bacteria, inflammation, possible intolerance to gluten, SIBO, anyway... massive combo. I spent a lot of money in doing this super fancy extremely complex stool test that tell you how my microbiome is behaving. All was stressed and inflamed basically... So I was put in a diet, low FOODMAP, no gluten, no lactose, no ultraprocessed food, no alcohol, no caffeine etc etc etc... everything veeeeery healthy. AH! And exercise without doing ABS. And I have been behaving like SUPER for the last months. I feel energized, my skin is better, I eat better and I am happier (also is summer). However, my belly stayed the same. I knew this was only a consequence... I didn't have IBS issues like altered bowel disorders (diarrea/consptipation related to eating specific foods) I was trying to find a pattern but I couldn't. 

    I had the opportunity to had an appointment at UCLH yesterday with a FANTASTIC gastroenterologist and in a matter of 10 seconds she said: I have no doubt you have Abdomino pherenic dyssynnergia. She showed me the photos on this chat and my belly LOOKS EXACTLY THE SAME! (Thanks for sharing photos... it actually helped me to find this community!)
    So here I am.... just to tell what she said, and the things I am doing that really helps.

    - The cause of this APD is not yet known. It is a descent of the diaphragm that makes your back curved and pressure to the other organs that will eventually "jut out" making this baby belly thing that we all know. She thinks for some reason (most related to stress and anxiety or psychological sort of things) the body reacts in a wrong way and the signals coming from the brain are messing around. The burning sensation is neuralgia of the nerves being developed as a chronic pelvic pain due to this distension. It is true that I didn't have this burning feeling before... it was just distension.

    - She says that the distension is really hard to revert. But there are things we can do. She suggested physio therapy for sure, to release the tension and also focus towards something else meaning that we need to learn to take the attention from this part of the body and "cheat" our brain. She also suggested hypnotherapy for this. I am also doing Acupuncture which helps a lot, and seeing a psychologist to manage my emotions (stress, anxiety, distress, concerns, etc.)
    Parallel to this, suggested diaphragmatic exercises, breathing exercises and moving every now and then specially when working and sitting on my desk. Work with postures, MOVE, and try to let things flow.

    I can't say I am completely fine, but I can see the light at the end of the tunnel, and I feel way more positive than before. I just wanted to share with you all because I know how horrible this could be, how lonely you can feel and how depressing the whole medical world is when coming to functional illnesses such as APD (things that cannot be seen or tested)

    We are not crazy, we are warriors and most probably this is the way our body tells us to STOP, relax and let things flow. Some people have it in a different way in their bodies, like migraines or back pain. We have it in our bellies. 

    Anyway I would be happy to have a chat with any of you if you need and we can share our experiences and progress. Because I do believe there is progress and we will get better.

    P.S: I am 30 yo and I live central London
  • samsam Member Posts: 4 Listener
    edited July 17
    Hi @BGlondon thank you for sharing so much in your post it was really helpful. Can I ask who you saw at UCLH? Did she not suggest any medications? I've been on a neuromodulator for 6 months but no luck so far.

    I'd love to have a chat about some of the things you've been trying. My email is [Removed by moderator - email address]
  • Tori_ScopeTori_Scope Posts: 5,002

    Scope community team

    Hi @sam :) Welcome to the community! 

    Just to let you know, I've removed the email address from your post, as we don't allow members to share personal information like that publicly on the forum. This is for the safety of all members. You can read our other house rules here.

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  • samsam Member Posts: 4 Listener
    Hi guys I just wanted to check in and see how everyone's physiotherapy is going? @jlmarlow and @thisboyiscraig @glasswende have you found any PTs who understand what to do?

    Alot of the people I have spoken to (mainly through the Facebook group which has some really useful info) have been told to 'brace' the lower ab muscle, however I seem to have the same thing as you @jlmarlow where I've been clenching for so long I need to learn to relax first which is super hard!


    And have got a zoom consultation with her physio in the US to find out the exercises and treatment that I can then relate to my PT. They also say they can chat to my PT here for any advice too which is helpful. Happy to share anything from this.

    I have also been doing research about Dr Drossman, a functional GI guy from the US and thought it was interesting that aswell as neurotransmitters he also prescribes CBT to help retrain the brain side which coincides with what @BGlondon was saying about doing hypnotherapy.

    I also have a GI appointment next week at UCLH that I've been waiting for for 7 months which is so exciting!

    I know there isn't much out there especially in the UK but I'm hoping that between all of us we can share everything we learn and find a way to beat this. It sometimes feels like a very lonely this as nobody has ever heard of it so if anyone wants to chat feel free to reach out.

  • BGlondonBGlondon Member Posts: 2 Listener
    Hi!

    Thank you @sam. This is very useful. 

    The doctor who treated me at UCLH is called Dr. Natalia Zarate. She is really good. I believe if not her, anyone of her team will see you. You can mention hypnotherapy and see if they will refer you as they did with me!

    I'm also in the waiting list for a PT at UCLH but my expectations are very low... The physio I had back in Spain was wonderful, very acknowledged. She did everything to relax, "pull" the skin around the belly button and massage. Also helped with aromatherapy and some breathing exercises.

    I was also treating my bladder with the PT. I don't know if any of you have the same problem as I do, but all this hypertension in the abdomen has affected my pelvic floor muscles and the bladder. I have the feeling I need to pass urine almost all the time even I don't have. This is really what bothers me so much... 

    I think breathing is crucial if not the most important exercise you can do, because all this starts from an incoordination of the diaphragm which comes from breathing and stress or similar and moves down. Also as my acupunturist says, "the energy doesn't flow" which also relates to the fact that everything is so tense that I don't allow anything to move. So anything that allows you to move and decongest will help. I do some torsions standing up, rotating from side to side. Also cow/cat position from yoga helps.

    It's a pity we can not share our contacts here because will be much easier to get in touch and help each other. @sam which Facebook page are you talking about? Is there a group on Facebook? Otherwise we can create one? I think that's how for example Endometriosis UK started and they really got a lot of audience... They help millions of women.

    Have a nice start of the week!

    Best,
    Berta






  • samsam Member Posts: 4 Listener
    edited July 19
    Hi @BGlondon ah great yes Dr Zarate Lopez is who I asked to see so fingers crossed! I don't know if you received it but I also messaged you privately as I think we can share our details through private message.

    But the Facebook group is just called Abdomino Phrenic Dyssynergia so comes up when you search groups. I have had a few zooms with Jordan who has had successful treatment and is really keen to connect everyone and share what helped.


    When my physio examined me she also said I had a really tight pelvic floor muscle which wasn't releasing which adds to the lack of synergy going in with these muscles. From the PTs that I've spoken to in the US who treat APD this is apparently really common and causes constipation which generally adds to the "Accommodation problem".
     Jordan had regular PT massage for not just her abdomen/diaphragm, tight thoracic back but also pelvic floor massage release too.

    x

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