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IC is doing better but fibro isn't......

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  • IC is doing better but fibro isn't......

    I began my treatment for IC and fibro in the same week.

    I'm happy to say my IC is improving, but I still feel like someone threw me under a bus as far as the fibro goes.

    My Rheumatologist put me on flexeril, 10 mg, to be taken at night. I take that at night with hydroxyzine which was prescribed by my uro, and I sleep like a baby.

    But my body still hurts all over. Most particularly my knees. My Rheumatoligist sent me for more bloodwork since I also tested positive for Rheumatoid factor. I have a follow up appointment with him on the 8th of february.

    He also referred me for PT but I work 40 hours a week as a bakery clerk and honestly, that saps all the energy I have.

    I just feel like I want to stay curled up in bed and never get up. Thank God my IC is under control right now.

    Any suggestions on how to deal with this till I see the rheumatologist again?



  • #2
    Mmmm, the only thing I can suggest is to get as much rest as possible. I need more than 8 hours for my body to get well rested. Try warm baths and either a heating pad or you can try ice for about 15 minutes and see if that helps. I have fibro too and I take cymbalta and flexeril. I take 10 mg of flexeril up to 3 times a day. I usually only take it at night but lately I have needed it more. I know it would be hard to go to PT but doing the stretches they have you do might give you more energy. If you can't get there maybe try some stretches on your own. Basic yoga stretches feel so good! Also, I have a relaxation CD that I use. It works really well especially when I am exhausted and hurting so much I can't sleep. YOu can find hatha yoga poses online, just do the most basic. Last if you have someone that can help you with trigger points by giving you a massage.
    Who gave you the flexeril? Maybe you could call and ask if they can send you something to get you through until you get there.
    Hang in there. I hope they are able to send you something.

    Link to the patient information, everything from What is IC? to Disability

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


    • #3
      I know it's difficult, but if you can manage to get in even one or two PT sessions you might be able to learn some things you can do on your own.

      Sending encouraging hugs,
      Stay safe

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      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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      • #4
        I know how you feel. I have fibro in addition to IC. I rarely post complaints on this board, but this is all just kicking my butt this week! I am having tremendous neck and jaw pain, as well as knee pain, and my IC is out of control with mad frequency, pressure and pain (frequency being roughly every 10 min). I am also going through a lot of tests right now to determine if I have an autoimmune thyroid condition-I had a partial thyroidectomy years ago, and now the remaining portion is covered with a large mass. Grrr! Sorry, just really need to vent. Why is it that some many of us have SO much wrong with us???
        I feel so frustrated, and I hate to complain, hate for my husband and kids to have to deal with this as well. For the fibro, I also take an extended release form of flexeril that does help a lot of the time, but this week it just isn't alleviating the neck and jaw pain. Does anyone else have that too?
        I also use a topical anti-inflammatory on my does generally work, but again, not much is touching it this week. (It is called Pennsaid).
        Okay, I am done now..thanks for listening!


        • #5
          Make sure your rhematologist did an ANA test to check for rheumatoid arthritis. If it is that, plaquenil, prednisone will both help. Prednisone may help anyways. If your testing positive on RF, and have that kind of pain, you probably need an x-ray of your knees to see if there is arthritis in them. You should put ice packs on your knees and see if that helps. My legs flare more, I can soak in epson salt in hot water, put menthol gel on them, it takes a couple of days, but it helps when I'm flaring.


          • #6
            Still in a horrendous flare, both IC and fibro, but found out what is wrong with my knee-had an MRI and I have tears in my patellar tendon, a torn meniscus AND a tear in my calf muscle. So now I have an answer to that pain. Grrr! Most likely need knee surgery, and open surgery (not a scope) at that.
            Does anyone else just feel like they are falling apart??? I have had 5 orthopedic surgeries in the past 4 years, the last one was this past April on my hip, and I had a heart attack while under anesthesia. I just can't win! Just 4 short years ago, I was a healthy (still had IC), super active and fit 40 year old, and now I hardly ever leave my house, have gained almost 25 pounds, have a myriad of medical issues, and just feel so beaten down I don't know what to do. Sorry if I am posting in the wrong place. Fibro was just my latest diagnosis in my never-ending story. I also have ligament laxity/connective tissue disorder. I don't tell many people at all about all my afflictions, but I am sick of the ones that say "gee, you don't look sick".....
            Grrrr....that is my rant for the evening! Good night all!