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I’ve lost all hope. Bladder Pain/PN

Discussion in 'General Discussion Subforum' started by LouLou, Dec 25, 2018.

  1. Dorado

    Dorado Beloved Grand Eagle

    Dr. Howard Schubiner is legit. Please believe him. He knows what he's talking about. I've spoken to him before - he is fabulous with a deep understanding of the body and how it works. And as always, miffybunny gives golden advice - she's 100% correct.

    It's all mind-body/TMS!
     
    LouLou, miffybunny and readytoheal like this.
  2. readytoheal

    readytoheal Peer Supporter

    Yes, of course
     
  3. LouLou

    LouLou New Member

    Thanks Miffy, your so right in all your advice. It’s really powerful stuff.

    I’ve been thinking all day about what you’ve written and have been telling myself that food won’t harm me and I’ve had a good day.

    Thank you.
     
    Lizzy likes this.
  4. LouLou

    LouLou New Member

    Thank you. Yes I’ve gone back to his email which always gives me confidence.
     
    Last edited by a moderator: Jan 27, 2019
  5. keenie82

    keenie82 Peer Supporter

    Hi Lou Lou,

    How are you doing?

    Howard Schubiner wrote me and said, 'This is not your fault, you are not doing this to yourself, you are just falling into fear. Be kind to yourself and calm your mind and body.'

    I can very much relate to your symptoms. I have been going through something similar for 8 months. No pain, just feel like I need to pee all the time. If I am relaxed, it is very bearable and I don't mind it. If I am tense/worked up - it is terrible. I get more worked up, and feel terrible.

    So I really try to keep myself in a relaxed state.

    Sending you love and healing. You sound like you are on the right path. Keep believing it is TMS. I know I am going to. It is 100% TMS. Especially when you were on the beach and it melted away.

    My example.

    Sunday January 13, 2019 I woke up and felt like I had to pee which put me into a tailspin. I had a good day previously so I was dismayed that the sensations were back. My family and I went for a cross country ski to a cabin and had lunch under the sun. I was still feeling the pee sensations but trying to have a good time. We came home and got ready for a hockey game. I was nervous about this hockey game, as the last hockey game I attended I had a real UTI and it was awful to sit there and feel like I had to pee. Well I went to the hockey game, my mind calmed down and I felt relaxed. I was so surprised. I had expected the opposite. Heck I caused the flare, due to worrying about the hockey game! Then the rest of the evening my bladder was relaxed because I was relaxed.

    It yings and yangs for me. Relaxed days, bad days, relaxed days. I can finally see the correlation and so on my bad days I am trying to just let it be and tell myself that it passes. It always does.
     
    miffybunny likes this.
  6. keenie82

    keenie82 Peer Supporter

    Hi @miffybunny

    Just wanted to say thank you for all your helpful words on this post. I go through something similar. Not with regards to reactions to foods or food sensitivities but just overawareness/too much focus on my bladder. Thanks for your wise words!
     
    miffybunny likes this.
  7. miffybunny

    miffybunny Beloved Grand Eagle

    Hi keenie82!

    Thank you so much for your kind words!! I'm more than happy to share my experience in order to help others! Bladder symptoms can be powerfully distracting so it's TMS finding a way to keep you in the strategy. Just the knowledge that there's absolutely nothing wrong with your bladder, and you are going to handle whatever feelings come up or whatever situations arise on a daily basis, is enough to disable the TMS mechanism. Triggers can take an infinite number of forms. All you need to be aware of, is your own triggers and mental associations, where they come from and the knowing that the connection your brain has made, has no bearing on the truth. Anything your primitive brain has become conditioned to can become de conditioned using your conscious mind consistently. :)
     
    readytoheal likes this.
  8. keenie82

    keenie82 Peer Supporter

    @miffybunny thanks so much for your wise words. Definitely have triggers and mental associations. Like you said they have no bearing on the truth. I can become de conditioned :) Excellent wise advise that gives me tremendous hope.
     
  9. Juan78

    Juan78 Newcomer

    Hola LouLou, espero te encuentres mejor en estos mese, mira te cuento mi experiencia....Un buen día a todos, espero me lean, soy hombre de 40 años, hace 4 años sufrí de miositis tensional generalizada, con debilidad, tendinitis en hombros, fasciculaciones y otros mas que no quiero recordar...., llegué a pensar que tenía la terrible enfermedad ELA, pero no fue asi por suerte y en unos 9 meses superé esta etapa; ahora, a inicios de este año comencé a notar que necesitaba ir al baño más frecuentemente, iba al baño, salía y tenía esa sensación de vaciado incompleto...., voy 5 meses con esto y ahora tengo ardor en uretra, presión en vejiga apenas tomo agua, que me hace ir a orinar..., me he realizado eco y radiografías y no se ve nada raro, prostata normal, vejiga, riñones apareció calculos, y en examenes de orina normal, sin embrago en uno apareció micro hematuria, en verdad todo esto me preocupa por temor a que sea algo muy malo, pero tambien creo puede ser el reaparecimiento del TMS, espero me lean y gracias
     
  10. NicoleB34

    NicoleB34 Well known member

    Hi there, i know this is old but i just want to say i have pretty much the same story as you....except for the food sensitivity part. I also have PN. See my profile pic? It's me on a mountain bike. Biking is the WORST thing you can do for PN, but here i am. I started with IC after a string of bad infections. The pain came and went (good clue that my nerves werent "damaged"). After a horrid year long flare, i got a PN nerve block. (just to rule out other types of pelvic pain). Big mistake, the needle irritation caused me full blown PN. Oddly enough, when my PN started, the bladder pain took a back seat, and eventually went away. I still feel twinges, but havent had a long flare in years. However, the PN beast is my new consistent enemy. Funny thing is, when i first got symptoms, i only had genital pain. No sitting pain (yet) and no rectal pain. It was like this for a few months. When i went to a PN doctor who confirmed it for REAL, and told me i'd have to stop sitting and give up everything i loved, i fell into a deep depression. Guess what? the next day i had sitting pain and rectal pain for the first time. I hadnt heard of TMS yet, but i knew things werent adding up. True "damage" would cause 24/7 pain, and yes, i do have pain every day, but it ebbs and flows. Once i learned about TMS, my first thing was to NOT avoid sitting. I used to be addicted to a special cushion that i brought everywhere. I stopped using the cushion. i told myself "not sitting is simply not an option when you drive, bike, and have a desk job". The pain was worse when i started adjusting my life, but soon it didnt matter if i sat or not. I used these fear techniques to cautiously get back into biking and sexual activity, which were previously horrible triggers. My "flares" eventually started dropping. I still get occasional ones, but they arent as bad. I started slowly doing things, but that's not enough. you have to approach activity with joy and not fear. You know the drill, you do something "bad" and worry "oh crap, was that a stupid decision? am i going to flare my pain? am i being selfish for living my life and potentially irritating my nerves?" It's almost impossible to stop thinking these thoughts, but i've drastically reduced them, and it helped. My "8" pain is now more like a "5". Still life altering, but like i said, my depression has lifted significantly. I am in a huge pain flare right now, but i'm doing my best not to worry about it.

    As for eating/drinking with IC, i know i dont have the ulcerative type, but when i first developed pain, i tried adding special antacids to my diet. that didnt help, and soon i figured out that my bladder felt the same pain whether i drank water or tea, or coffee, etc. When i realized this, i said "to hell with the diet". I ate and drank whatever i wanted, almost since the beginning, and as a result, i dont have diet sensitivity. I also had short bouts of IBS and realized quick that diet didnt matter much, so i stopped trying, and it went away.

    That being said, if you read up on the "central sensitization" pain model, (it's basically the more scientific doctor term for TMS) you'll see that the brain is amplifying nerve sensation. When that happens, you are simply more sensitive. This includes your bladder. So yeah, if it's really sensitive, then yes, spicy foods can affect it, but the point is, it's not DAMAGING it. Other fun fact? the intestines share a lot of the same nerves as the bladder, so eating spicy foods might actually be irritating your intestines (IBS) but you feel it in the bladder instead. IBS and IC go together for a reason. I tried all the bladder treatments, including painful instills with DMSO and heparin.

    Now i just take low dose painkillers, but i hope some day to be off them. Why do i take them? Well pelvic pain is so miserable and panic-inducing, and i need to be able to work and sleep. The pain meds make me more brave to take the step into getting my life back. when i started biking again, i told myself "i'm going to flare...but it's ok because if i overdo it, i know i have meds". Basically, the meds make me less scared to take risks because i know i have a fallback. Like i said, it would be nice to be off of them, but in the meantime, never feel bad about relieving your pain so that you can function. TMS recovery can be a long journey.
     
  11. keenie82

    keenie82 Peer Supporter

    NicoleB34, just wanted to respond that I appreciated your lengthy response and your story is very interesting. Thank you for sharing ...

    I am glad to hear that your bladder pain went away. That is really positive. I am so glad that you haven't had a long flare for years.

    The mind is a powerful thing! So it is interesting how after you got a full PN diagnosis that the new stuff started.

    I too mountain bike. I don't care if I flare after. I too have sex with my husband. I too don't limit my activities, though I was getting a bit weird with food. But honestly I have never noticed a difference with food besides coffee.

    I am glad you found a solution to take low dose painkillers and that is a brave step to getting your life back.

    TMS recovery is a long journey. Still in recovery myself.

    I have enjoyed reading your posts. Thank you for your support on this forum.
     

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