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 Administrator Posts: 6,533 Scope community team
    Thank you for sharing all this @glasswende. Please definitely keep in touch! :smile:
    Senior Community Partner
    Scope
  • Chloe_ScopeChloe_Scope Administrator Posts: 8,472 Scope community team
    Welcome @glasswende and thanks for sharing this with us!
    Community Partner
    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 Administrator Posts: 8,472 Scope community team
    Welcome to the community @lulu22
    Community Partner
    Scope
  • RubberbandgirlRubberbandgirl Member Posts: 1 Listener
    edited January 30
    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.
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