Abdomino pherenic dyssynergia - Page 2 — Scope | Disability forum
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Abdomino pherenic dyssynergia

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Comments

  • Fm611
    Fm611 Community member Posts: 1 Listener
    edited April 2021
    Can anyone recommend a good physio in the UK for this condition as I have self diagnosed after reading the bloated belly whisperer. 
  • jlmarlow
    jlmarlow Community 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.  


  • BGlondon
    BGlondon Community 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
  • sam
    sam Community member Posts: 4 Listener
    edited July 2021
    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_Scope
    Tori_Scope Scope Posts: 12,491 Disability Gamechanger
    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.

    If you'd like to contact a member privately, you can do so through private message once you have 25 points. You can gain points by posting, commenting, and engaging with the community.
    National Campaigns Officer, she/her

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  • sam
    sam Community 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.

  • BGlondon
    BGlondon Community 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






  • sam
    sam Community member Posts: 4 Listener
    edited June 2022
    Hi @BGlondon ah great yes Dr Zarate 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

  • kate22
    kate22 Community member Posts: 1 Listener
    Hey guys, thanks for all your posts! I have abdomino phrenic dyssynergia too! My gastroenterologist is Natalie Zarate Lopez at UCLH too @BGlondon and @sam. Is there a way of Priavte messaging you?
  • Biblioklept
    Biblioklept Community member Posts: 4,682 Disability Gamechanger
    @kate22 You need to be a member for a while before it lets you private message 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
    Thanks for supporting @kate22 here @Biblioklept. Your support is one of the reasons Scope's community is the supportive and friendly space it is. 

    @kate22 - Is everything ok? We are here for you if you would like to share a little more with us  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • danielrosehill
    danielrosehill Community member Posts: 3 Listener
    I registered on the forum just to respond to this thread. I was diagnosed with abdominophrenic dyssenergia after having my gallbladder removed about four years ago. I'm a 34 year old guy. The diagnosis was made by a neurogastro - so this kind of stuff is really his bread and butter. I've tried drugs for functional dyspepsia like nortriptyline and amitriptyline but nothing has really helped unfortunately. The negative impact this has had on my quality of life has been huge.... I get bloated after everything I eat or drink - even water - and so far basically nothing has helped. I'm looking into diaphragmatic breathing and PT. It seems like biofeedback might work but... there appears to only be one doctor in Barcelona who offers this. The situation isn't helped by the fact that there's almost no information online about this. Hope we get some updates from people on this thread! 
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
    Hello @danielrosehill

    Welcome to the community! :) It's lovely to see you join to respond to this thread. It has been a while since the OP was on. We have a section called Rare, Invisible and Undiagnosed Conditions if you'd like to share and discuss more on abdomino phrenic dyssynergia. I had to google it myself. I hope you have a lot of support around you! 

    Just as a disclaimer, we don't give medical advice on the online community. 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • danielrosehill
    danielrosehill Community member Posts: 3 Listener
    Hello @danielrosehill

    Welcome to the community! :) It's lovely to see you join to respond to this thread. It has been a while since the OP was on. We have a section called Rare, Invisible and Undiagnosed Conditions if you'd like to share and discuss more on abdomino phrenic dyssynergia. I had to google it myself. I hope you have a lot of support around you! 

    Just as a disclaimer, we don't give medical advice on the online community. 
    Hannah,

    Surely!

    Don't expect that the OP will respond but wanted to add a "me too" to the discussion for those who might find this thread later.

    Will post an intro and thanks

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