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In an awful fibro flare...

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  • In an awful fibro flare...

    I've been away from the board because I've felt so incredibly awful for about 2 weeks. I just can't seem to shake this fibro flare. I've got awful pain in my lower legs/shins, and I just hurt and ache all over. I've been sleeping about 12-15 hours a day, literally. I'm sooooooooooo tired I just can't seem to function. My bladder seems to be doing ok since I've been taking Macrobid 100mg every night before bed. So at least that's one thing I've not had to worry about.

    My poor house is such a mess and my plants need to be watered before they shrivel up and die. My favorite place is my bathtub and when I'm not sleeping, I'm soaking in a hot bath with a book to take my mind off the pain.

    I'm sick of being sick! Arrrrrrrrrrrgh.

    Oh, and to my dismay, the Lupus specific tests came back negative. My doctor and I are totally stumped as to what's causing the rash on my face, the all over body itching, the sores on my lips and nose, etc. It's so frustrating. I feel like I'm finally on the right track to being properly diagnosed, and the tests came back negative.

    So, anyway, thats a summary of my life for the past couple of weeks. My son is out of school and home from college and I could barely get dressed and put makeup on to greet him yesterday. I hate that he came home to a sick mom.
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

  • #2
    Hey Sandy!

    I dont have fibro, but I have CFS so I understand the terrible fatugue, and i'm so sorry you are suffering. I can't relate to the pain, but i'm sure its terrible and I wish you didn't have to deal with it. You are a great mom, and you son is so happy to see you no matter if your healthy or in a flare. Hope you feel better soon. Thinking of you...
    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control


    • #3
      (((((((Hugs))))))))) I am so sorry you are having such a rough time...I hope they find out what is causing all the breakout.. Maybe you need to see an allergist to see if you are having a reaction to something.. Well I am sorry I have no answers but I hope you start feeling better really soon

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

      Link to Patient Handbook:

      Diet Reference Sheet:

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

      ICN 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.


      • #4
        ((((((((((Sandy))))))))))) Sorry that you're having such a horrible fibro flare. I hope you start to feel better soon. I can only imagine how bad you're feeling. I'm sure you son is just happy to be home and see you even if you are in a flare. Get well soon

        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


        • #5
          hugs to you Sandy, I know how you feel, I get to where I can't walk, and its hard to carry Jake. I hope you feel better soon.
          'The will of God will never take you where the Grace of God will not protect you.'


          • #6

            keep your spirits up and i hope your flare goes away soon and you feel better. take care.


            • #7
              Very soft (((hugs))) heading your way. I do hope this ends soon so you can enjoy having your son home.

              Shopping??? Did someone mention shopping? I'll get my hat... ;-)

              Where I can be found most days.

              Link to the ICN Patient Handbook:

              Link to the IC Diet:

              IC 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.


              • #8
                Many hugs coming your way and Sandy thank you for your help.

                Sending thoughts and hugs, Trishann


                • #9

                  Sorry you are feeling so rough! I just dont get it either regarding the rash and pos ANA but neg Lupus test! Did you feel horrible the day they tested you? Did you have the rash that day? It just doesnt make any sense to me! I wish like everything you could come up here and see my Rhematologist in Nashville. (Not that she would do anything different necessarily, I guess I would just feel better, since she d/xed me after so many others said I didnt have it.)

                  The weird thing too is how great you feel on Prednisone...just like me. Of course with the +ANA, it is definately an autoimmune disease, so I suppose that is why it responds to the Prednisone. But, still, I know how horribly frustrating it is not to have a d/x and know how to proceed.

                  I wish I could help you or knew what to tell you. But, I hope you start feeling better soon and get some answers soon too.



                  • #10
                    Sending lots of hugs

                    I hope this passes quickly!!!

                    *Diagnosed with severe IC in 2004
                    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                    **I am not a medical authority nor do I offer definitive medical advice. 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.


                    • #11
                      I'm sorry you are having such a hard time right now. I hope this fibro flare passes soon.


                      • #12