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Severe Pfd Pain...help

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  • verdicries
    replied
    i think i'll ask my doc about neurotonin tomorrow. i'm sure she looooooooves me, i'm so sensitive to ALL meds. but i am DESPERATE.

    thanks.

    ps-donna, i'm also asking about surgery. it's just too much to bear right now.

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  • froelica
    replied
    Neurontin is a Rx medicine that can be used to treat nerve pain. I think generally it is prescribed for shingles, but I've seen MANY people prescribed with it on the IC and PFD forums.

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  • ICNDonna
    replied
    There are several different meds that work like flomax. Cardura and hytrin are two --- and I think there are others. My husband couldn't tolerate flomax --- it caused nasal and bronchial congestion for him.

    Donna

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  • verdicries
    replied
    neurotonin?

    wondering what neurotonin is? thanks.

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  • verdicries
    replied
    hi donna,
    i'm considering cystocele/rectocele surgery, i just dunno what to do about my son (not picking up stuff...hard w/a baby). also, while the fallen bladder isn't HELPING my bladder emptying situation, the pfd is making it worse i think.

    flomax scared the crap out of me w/side effects, i took it and well...see my signature. yesterday out of desperation i took it again. nothing seemed to happen! i'll try it again today.

    *big sigh*

    thanks for the replies. i'd like to try valium for pfd pain but i know it'll knock me out plus cause more retention (ick). i'm thinking of trilisate, i used that as a kid for fibro. anyone used that? i haven't since i was...hmm...15? i think it helped.

    happy easter everyone

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  • ICNDonna
    replied
    I have a sling and it was such a huge relief to be able to urinate and empty my bladder. And the surgery wasn't bad at all. I couldn't lift anything for several weeks, but that was the only bad thing.

    One of the flomax kind of drugs might help too.

    Donna

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  • rosesitty
    replied
    The valium doesn't work as well for me. It's almost like eating Skittles. The doc is weaning me off the valium and wants me to try neurontin.
    Stephanie

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  • Ginny
    replied
    Dr. Moldwin perscribes 2 mg of valium twice a day for PDF. It really helps. Pain killers do not work for me for PDF but valium does.

    Ginny

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  • froelica
    replied
    Originally posted by verdicries View Post
    what kind of exercises do you do in pt for your pfd?
    The only exercises I do specifically for PFD are the 5 minutes of kegels a day. For general muscle tension (I seem to hold ALL my stress in my muscles, which is bad cause I'm a very tense person already! ) I walk for 20-30 minutes a day and then some days I meditate for 10 minutes and then lay down and concentrate on tensing and then relaxing ALL my muscles until I feel like goo. I figure if the rest of my body is tense, how could I possibly try to keep my PFD muscles relaxed???

    Good luck!

    ps. I don't usually have any food sensitivities for IC, but man.... I've been drinking a lot of beer lately (instead of my usual red wine) and my bladder feels like its being stabbed with a pen! No more beer for me for a while!

    Leave a comment:


  • rosesitty
    replied
    Verdicries - I have severe PFD, I'm flaring, but it sounds like it's worse for you right now. I've tried PT, massage therapy, acupuncture and trigger point injections - and nothing's worked. In fact, it's made it worse. Right now I'm taking Valium during the day and a Soma at night after I soak. The Soma seems to be working better than any other muscle relaxer. I've been soaking twice a day, because it feels like my bladder is going to fall out. My back, right leg and hip ache all day and occasionally have to take oxycodone for pain. What helped the other day was to break the Soma into four parts and then take a quarter every two hours. Perhaps your doc will give you something stronger so you can function or at least sleep.
    Hope you feel better soon.
    Stephanie

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  • littlemyrn
    replied
    Do you have any muscle relaxers. If so, try that, also my URO said if I need to use the stool softners when needed. They work for me. Also, I will post this somewhere else, I was in Chattanooga standing in line getting tickets for the aquarium and I began a conversation with a woman in waiting also, well, long story short, her husband is a nurse and works for a new company that has come up with a product that they use for bladder slings and such that actually will turn into your own tissue after time. She was from Alabama but went to Emory in Atlanta to have the surgery, this was 3 weeks before her vacation, she said she was so great, never felt better. Her husband was actually in Chatt. to help in a surgery. I have her email and the product name if you or anyone else wants it, just pm me. Hope all goes well.

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  • verdicries
    replied
    what kind of exercises do you do in pt for your pfd? i will try the heating pad (just have to FIND it...lol). thanks. the soma has basically worn off (only lasts about an hour for me. boo), grrrrrrrrrrrrr. i wonder why it doesn't last for me?

    thanks everyone.

    Leave a comment:


  • froelica
    replied
    It does sound to me like stress might be playing a least a small role. I know it really does for me, especially medical stress!
    I keep hearing that when you have a high muscle tone you should not be doing kegels but they are a HUGE part of my success as of late. I started off at 6.4 and now I'm down to 1.8, so I'd question that rule of thumb...

    verdicries, I'm sorry you're having such a hard time. When I'm having a lot of pain from spasms I get a lot of benefit from REALLY focusing on relaxing my pelvic floor (of course), exercising, stretching, and really massaging my lower back, butt, inner thighs and the area of my PF muscles. That and a heating pad usually help a little.
    I hope you feel better soon!

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  • verdicries
    replied
    i have been considering surgery. it would be nice to poop w/o sticking my finger into my vagina (sorry tmi).

    erika, what do you do for your pfd? i have an INSANELY high resting tone.

    thanks.

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  • humpieumpumkin
    replied
    I know surgery is a last resort, but can't they correct that with a sling? In your case it seems like it could be worth while. You are suffering so badly.

    Erika

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