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  • #1

    all over pain

    Does anyone else when they in a flare hurt from head to toe. I even hurt in my head. I have been doing pool aerobics and had my PT evaluation on Tues. I thought that it was all from that but I didn't swim today because I have so much to do here at home. With the total body ache it makes it hard to even get that done. I am so so so tired of hurting day in and day out. I am afraid to take Motrin 800mg. because I want to be prepared if my doc. calls to schedule the dilation if he has a opening. I am living on extra strength tylenol and valum at night along with all the other meds. I about 3 weeks ago started to have pain in my left side above the hips. I think it is in the colin area.

    Thanks for reading. May you all have a great day. I need to run to the girls room so I am going to say good-bye for now.
    Interstitial Cystitis Stomach problems
    diastolic dysfunction
    vascular insufficency of left leg
    pelvid floor disorder
    hypothroidisim
    asthma
    bread cancer - 5yrsl. remission
    swollowing difficulty
    fatigue
    lots of doctors
    lots of med.














    Keep your eyes on the Lord and he will direct your paths.
    Tags: None
  • #2
    Sorry you are feeling so poorly. Take the day off and put your feet up!

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    • #3
      Hope you feel better soon. I tend to get alot of deep pain in my back, hips, and legs when I have a real bad flare and my pelvic floor muscles are involved. My Doctor explained to me that when one part of the body hurts non-stop(my bladder) things around it will start hurting too. I tend to get stress headaches and stress induced flares at the same times.
      Again, I hope you feel better soon!
      Rachel
      DX's:
      IC; PFD; possible Fibromyalgia; IBS;

      Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

      I've Tried:
      three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
      Currently using:
      Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
      Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
      I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

      Comment

      • #4
        I can relate. I find that if I overdo it, do too much in one day then I hurt all over. Even if I wasn't flaring, usually that will bring on a flare and I will ache pretty much from head to toe. It's really hard because I work all week and then want to try to get all of the weekend chores done as soon as I can, like grocery shopping and laundry so I can actually have some time to relax. Only problem is if I'm not careful I end up being really sore and worse off than if I would have tried to spread stuff out more. Hope you feel better. It does suck to be in pain everyday.
        Christine



        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus

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        • #5
          Have you ever looked into fibromyalgia or myofascial pain syndrom? I hurt all over all the time and I have both, the humidity and cold weather tends to really set it off.
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment

          • #6
            I was just wondering also if you could have an autoimmune disease of some sort. Have they ever checked your ANA levels? The only reason I sat this is because I was thinking that maybe IC could be all autoimmune anyways. I know that my ANA is elevated as well as my sed rate and c-reactive protein. They are not severely high, but just slightly elevated. I also get all over pain in all my muscles. My rheumy checked for lupus and scleroderma, but those tests were negative. He said that he still thinks it is of some autoimmune origin though, and that our bodies are attacking us instead of fighting for us like the normal immune system is suppose to do. Kind of like what our bladders are doing to us. Just a thought.
            Jen

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