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not sure if I can with stand it

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  • #1

    not sure if I can with stand it

    I haven't been able to get the pain level below an 8 since Tuesday PT and that is even with the vicodin. The stomach breathing used to help a little but now it dosen't at all. Can't seem to relax the muscles either to help with the pain. I really do not feel good at all and that achy flu feeling has come back, which I used to get all the time but haven't had much since taking the cystoprotek. My Uro asked me what happened at my first PT appointment. Told him she has me doing somethings and what> I also told him it was very hard but he said keep with it. It will take time. I know it will but I'm not sure if my body and bladder can keep up with it. Also feel like crying all the time and don't really want to go there and start to blubber. With any of you who PT did help how much pain level did you have in the beginning and how long before the pain level went down? I just really need some support here. My family is telling me it is a waste of time. Thought maybe they would help me out on this but nope. My brother went for PT and they told him he should and it was great. With me a waste of time. Soory to be complaining again too.
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  • #2
    If you are in this much pain from the PT, I would think it is your body telling you something is not right. Maybe take a break from the PT for a week or so and see how you feel then. I would really call your doc back and tell him just how much more pain the PT has caused you and maybe tell him you want to take a break from it, especailly if it is causing you more pain. I hope you feel better soon.
    Jen

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    • #3
      I took an extra Vicodin to get the pain down to 7. Don't like doing that because I feel kind of out of it now. I see my PT tomorrow morning and will talk with her. Maybe I can do the exercises just twice a day instead of 3 times until I get to feeling better by doing them. I did take today off. Feel awfully guilty about it but just couldn't push it to do them.

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      • #4
        As I posted before PT for PFD also through me into terrible pain. I went through the course and graduated (got a t-shirt), did alot of crying. When I changed URO's because when I called the original one crying saying that whenever I went to PT I was in sooo much pain could she give me something, she said no. So the story goes, I found a new URO that day. Went in and she said she prescribes muscle relaxers to her patients going through PT to help with the discomfort. That would have helped me alot. She even still prescribed them for me because I was about to take kids on vacation and new I would be on feet alot and doing a lot of walking.

        Now, that was 1 1/2 years ago, I really wanted to see if the TENS unit would help my pain, so I got my GP to send the orders to the original PT I went to and I went yesterday, and got one, whoooo what a difference for me. I wish I would have had one when I was suffering so. I went for my URO appt. today and we had a long discussion about TENS, she said she had 200 IC patients and only 5 have asked for or have a TENS. She was so glad I got one, she believes they really help on those days when you are tense or on your feet alot. They relax those nerves/muscles. I could tell such a big difference yesterday in my pain level.

        Long story short, ask your doctor for something to help you get through the course. Best of luck.

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        • #5
          I went thru 1 1/2 years of PT all of IC/PFD, and of the five PTs I saw two of them had no idea what they were doing. One had taken a weekend training course of PFD and had PFD herself, and purclaimed herself an expert. She ended up making me worse, and yes I stuck with her program for 6 months going 2 times per week. It is hard to find a good PT for this area. I am a firm believer the doctors should be supervising the PTs therapy plan.

          You might want to look at the ICN's list for PTs and contact the ICN and ICA support group leaders nearest you. They might be able to make a suggestion from their personal knowledge.

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          • #6
            I gave it a five month shot of PT. It made my symptoms much, much worse. Now I'm spending all my efforts trying to get back to PRE-PT. I've tried massage, acupuncture, trigger point injections -- the only thing that helps a little bit is the muscle relaxer and soaking. It doesn't work for everyone - just like everything else!
            Stephanie

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            • #7
              I suggest you talk with your therapist about possibly easing off a little. I've never had therapy (don't have PFD), but I did go to therapy for a frozen shoulder and I promise you that the therapy was worse than the shoulder for months before it began to help.

              Donna
              Stay safe


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              • #8
                One more comment

                I would like to add one more comment to this thread, sometimes when a PTs therapy plan doesn't work they will blame it on the patient, even though, the patient has done everything the PT advised. So please be aware of this trend and don't take it to heart. No one like to admit their program or work wasn't effective.

                I don't regret trying PT and would encourage everyone to do so with a an experienced pelvic pain PT and a good doctor's supervision. It does work for some people and compared to some of the other IC treatments the risk versus benefit ratio is good.

                Best wishes,
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                • #9
                  I have done PT with 2 different PTs. The first one really helped me a lot. She hooked me up to the monitors and did biofeedback so that I could learn to relax my pelvic floor muscles. I was staying half way contracted all of the time. Yes, there were times that I was sore or hurt some afterwards, but not what i would call excruciating pain. She also got me started on a tens unit--it became my new best friend until i discovered the alpha-stim unit. Anyway, last Fall I did PT with another PT. She was a miracle worker. She really is a pfd specialist (trained under the doctor who wrote "a Headache in the Pelvis". She taught me so much about trigger points and how to relax these points on my own. There were days that I was sore and hurt some afterwards, but not excruciating pain then either. Definitely not as bad as some of my flares. Both PTs were good, but they did really different things. The first one focused on doing kegals and the second one focused on trigger points. Neither one was overnight relief, but they both seemed to help me. Maybe you could ask on the forum for your region and find out some of the pts that they recommend. I was very skeptical about the pt helping me, but it really did. I hope that you start getting some relief or else find a pt that really can help you. Janice

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                  • #10
                    Just another comment

                    PT doesn't work for everyone. It made me worse. I had one of the best in Portland, and the PT caused severe hip and back pain. Now, it also feels like my bladder is going to fall out. I met with the guru of PFD, and she wants to examine me, and I'm afraid. Everything I do seems to make things worse, not better.

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