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  • incredibly overwhelmed... PFD

    just in the past month i was diagnosed with pfd. my urologist wants me to try the therapy before ruling out ic and see if this is the only problem. ive been doing physical therapy once a week and doing to exercises religiously at home. it just seems to be getting worse... the only time it wasnt bad was when i was on vacation in hilton head 2 weeks ago (which makes me think its a stress caused thing). lately i have had to call of work because the pain is unbearable. i even went to the ER today because i was convinced there was something else wrong since the pain was so bad and of course nothing was. i have become SO frustrated with this whole thing and the fact that i've been in this pain for 3 months. i have horses and i haven't been able to ride in a month and this is the one major de-stressor ive always had in my life! does anyone else feel completely overwhelmed?? i feel like the doctors don't understand how much pain im in or take me seriously. ive tried valium and it helps but it makes me sleep the rest of the day. i feel like i don't even want to leave the house because im so worried about the muscle spasms and the pain becoming ovewhelming. baths are the only thing that seems to relax me besides sleeping. any other time im just worrying its something other than pfd or some kind of disease putting me in this pain even though ive been to a million doctors and all they tell me is pfd. any suggestions or de-stressing relaxtion tips would be much appreciated :/
    Pelvic Floor Dysfunction May 2011 from bad UTI
    21 years old, horseback rider (although this has been practically eliminated from my daily routine since the PFD)

    Current Meds: neurontin 600 mg
    valium 2mg as needed

  • #2
    If the physical therapy is increasing your symptoms, you might need to go a little easier. It's very easy to overdo with PT. I know at first I overdid it with PT for my shoulder following surgery --- and it definitely caused pain.

    Sending warm hugs,
    Donna
    Stay safe


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    • #3
      I just wanted to add that you should make sure that your physical therapist is familiar with how to treat IC patients. If they have you doing kegals they are not trained for us. Our muscles don't need strengthening they need to be loosened. Don't mistake any excercises that have you tighted slightly to be able to locate the group you are working on for a kegal. A kegal is to build strength, done in repitition and holding tight. Don't do those if you suspect you have IC or PFD.

      Another thing I was thinking was that PT might still help you but you might need to get your bladder calmed down prior to trying that. If my bladder is flaring really badly PT done to strengthen is painful. I have found some yoga poses that help relax my pelvis. They are very simple exercises.

      I hope you are able to find relief soon
      Sandra
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      American Urological Association Clinical Guideline
      Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
      http://www.auanet.org/content/guidel...ent_ic-bps.pdf

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      • #4
        I find that with my PFD and going to PT that slower, and shorter visits is better. I just went through this last week.

        My pain increased after I left my 2nd appointment to a pain level of at least 12! I was in tears and was basically bed ridden. She went a lot slower and didn't do as much on the 3rd visit.

        Are you using ice packs after your visits? This helps me so much.

        Also, she mentioned that if my pain stays the same, she is going to try the tens unit on me. She explained that it will "break" the pain cycle and may help me.

        I went today and so far, I feel a whole lot better. Yes, stress is #1 with both my IC and PFD.

        Hope you feel better!
        Minds are like parachutes-they ony function when they are open.
        -Thomas DeWar-



        ICN Newbie Volunteer


        *ICN Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment


        • #5
          I completely agree with every post here. As Sailaway girl mentioned, it is *crucial* that your PT knows how to treat PFD and isn't making you do kegels or any other type of tightening/strengthening exercises.

          Overdoing it can also cause a lot of flaring. I see that you are doing exercises daily at home. I'm not sure what kind of excercises you do, but all I do during the week is about 10 minutes of "child's pose" and 10 minutes twice a day of diaphragmatic breathing while doing reverse kegels/pelvic drops. Both these are very relaxing excercises and are not stretching or strengthening anything. They're designed to help us release some tension in our pelvic floor. It is important that you make it very clear to your PT that you are getting worse. If he/she doesn't take that into consideration and modify your treatment as you continue to worsen and worsen, it might be time to seek a find PT.

          That being said, sometimes it gets worse before it gets better. If you find that you are flaring after PT, but the flares calm down a bit to your baseline level of pain by the next PT session, then this is probably a case of "it gets worse before it gets better". However, if you've been continually worsening for over a month...that is a sign that your current treatment plan isn't working, and some modifications need to occur.

          These modifications can include adding medications such as muscle relaxers or pain medications, reducing home exercises, shorter sessions and less frequency in sessions, or an actual change in what happens during your PT appointment.

          Some de-stressors for me is meditation and acupuncture. A heating pad can help too.

          The first 2 months of PT for me was terrible. I just got worse and worse and worse, never calming down to my baseline level of pain. My PT said that my nerves are really sensitive and if I continue to flare, PT will be more harmful than beneficial. I then went on a 6 week break from PT and started Lyrica. During that time, I almost returned to my baseline level. I started PT again and with lots of modifications, I still flare after PT but will return to my baseline level the following week, which is a good sign.

          PT is a very slow process and if your case is severe it can take months to figure what works. Its been 7 months for me so far and we are finally getting into a rhythm of what helps and what doesnt. PT can take over a year. The important thing is that your PT listens to you and makes the necessary changes and recommendations that are tailored to your situation.
          Current treatment:
          Elmiron 100mg 3x a day
          Hydroxyzine 75mg
          Lyrica 100mg 3x a day
          Pelvic Floor Physical Therapy started 12/10
          Ativan 1-2mg as needed


          Bloging my thoughts at www.thispatientperspective.blogspot.com

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          • #6
            My first few sessions were pretty painful. I had to increase the time between treatments and also have the pt use a lighter pressure. Mine was most definitely a case of worse before better and I was glad I stuck it out. I haven't had any problems since the therapy, and do my stretches she gave me daily.

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            • #7
              First of all if the valium is making you tired, you need to switch. Try valium suppositories or baclofen. I take that. You can take more of it than the valium and it does not make me at all sleepy. I do take zanaflex at night for sleep. I use the valium supps for after PT or sex. They work very well. You may need a pain killer as well for a short time, not sure there, actually I find the muslce relaxers very helpful. For relaxation and pain relief I find nothing works as well as a hot bath. I fill the tub all the way up, get your whole body under water. You can actually feel you muscles relax, and if you have PFD, it is not just your pelvic floor that spasms. You entire body compensates for the pelvic floor and all your muscles can be affected. Sometimes I drink a glass of wine (also helpful on its own, if your bladder can tolerate it. I drink only pinot grigio or chardonay) and light candles. Sometimes a heating pad or meditating. Find what works for you. Definetly get on some muslce relaxers that dont make you drowsy though. That would be first thing I would do

              Comment


              • #8
                Thanks for the replies. the PT has been much better and i find that often my only really bad days are the week of my period or days im very stressed or on my feet for too long. it's very frustrating as it seems to be controlling my life right now.
                Pelvic Floor Dysfunction May 2011 from bad UTI
                21 years old, horseback rider (although this has been practically eliminated from my daily routine since the PFD)

                Current Meds: neurontin 600 mg
                valium 2mg as needed

                Comment


                • #9
                  PFD comparable to hell on earth!

                  I'm so sorry because I have been there. Please go back to my postings between Oct 2006-early 2007. Phys therapy w biofeedback is a lifesaver. Hang in there, and if ya can't pee, get in tub of warm water and pee. Keep disposable caths handy. Ask for help. Stay on this site! Great support!
                  Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

                  Comment


                  • #10
                    this is kind of an old post but I went to a PT today and we used biofeedback to test my kegals. She said that my kegals are horrible. I was also unable to relax them at all. But, if I have IC (only diagnosed on symptoms), I shouldn't do the kegals. Any suggestions? I feel everything in my urethra.
                    symptoms when in a flare:

                    I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
                    *I have a fibroid on my uterus near my bladder.

                    Medication
                    100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
                    Flexoril 10mg (doesn't work)
                    Hydrocodone 5/325 PRN
                    Cetalopram 40mg *severe anxiety over flare

                    Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
                    My urethra are very tight.

                    currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

                    I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



                    find me on Facebook! Brandy Schildknecht Covington

                    Comment


                    • #11
                      Yes, you basically do kegels during biofeedback. It's ok. You definitely sound as if you have PFD but only a scope will look at your bladder to determine the severity of IC. I would get it checked if you are unable to work. God bless!
                      Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

                      Comment


                      • #12
                        I had both pelvic floor hypertonicity with spasms and IC. I treated both but started with the pt work first. Have they suggested warm baths twice a day in epsom salts or any pelvic stretches to relax your muscles? Camomile tea helped me a great deal along with the stretches. Some people are given valium suppositories to help relax the muscles. I had been on Ativan due to my anxiety but ended up having it help my pelvic floor to relax. My cysto with hydro appeared normal but I was still diagnosed with IC from symptoms alone.

                        Comment


                        • #13
                          Benzos like Ativan def help most ICers with pelvic spasms. It's a relaxant. Warm baths are good as well. I add lavender to mine. Extra relaxation. Herbal teas without caffeine are helpful for me. I currently drink Mothers Milk Tea for lactation. I incredibly had a baby on Dec! I had to take medication and exercise to carry him. He made it to 36 weeks and came out small and perfect! It can be done. I am so fortunate that my OB is well versed on IC! he knew exactly what meds to give and I was very conservative with them. I have a high pain tolerance by now
                          For PFD, the best non-invasive, non- medicinal things one can do are biofeedback therapy, yoga, and acupuncture. Just my opinion!
                          Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

                          Comment


                          • #14
                            VV for your TEE TEE are great too! That's vaginal Valium
                            I get a combo with baclofen and Valium. It's great because you don't have to ingest the med. Great for those of us with gastro issues.
                            The recipe my dr uses is
                            5 Mg Valium
                            6 Mg baclofen
                            1% lidocaine

                            You can do many combos! If you do well with Atarax or Ativan, you could do those instead. Compounded so there are many options!
                            Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

                            Comment


                            • #15
                              thanks for the info. I am not sure my PT is going to do any internal work. She mentioned biofeedback and TENS unit. She hasn't done any thing else. I was assuming she would do some sort of massage or at least touch me. I have been doding my exercises but not as much as she wanted me too. I do feel worse in the last couple of days but I wouldn't classify it as soreness. It feels like a weird "nervy" pain. But I really think PFD is definately a problem for me. Now I just have to find someone that can actually help me. I'm assuming I will have to travel to Seattle to see someone.
                              symptoms when in a flare:

                              I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
                              *I have a fibroid on my uterus near my bladder.

                              Medication
                              100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
                              Flexoril 10mg (doesn't work)
                              Hydrocodone 5/325 PRN
                              Cetalopram 40mg *severe anxiety over flare

                              Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
                              My urethra are very tight.

                              currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

                              I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



                              find me on Facebook! Brandy Schildknecht Covington

                              Comment

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