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Curious - How Many People Have Fibromyaglia Here?

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  • Curious - How Many People Have Fibromyaglia Here?

    Doc told me IC is very common with Fibromyalgia which I was diagnosed with 6 yrs ago (and had it MUCH longer before I was properly diagnosed).
    Just was wondering if anyone else had it here and if they were told the same thing? Thanks! HUGS


  • #2
    I have Fibro too. Your Dr. was right...alot of ICers have Fibro. The percentage of IC patients with it is much higher than in the general population. In fact, in Dr. Robert Moldwin's book "The IC Survival Guide", he wrote a chapter about co-existing diseases and syndromes. In it, he mentioned Fibro, Endo, Depression, Anxiety, Auto-immune Diseases, Vulvadynia, Vulvar Vestibultis, and several others that occur much more frequently in ICers than in the general population. (Pretty much all the diseases in my signature. )

    Sorry to hear you have it too. But, the good news is that lots of the meds that help IC help Fibro and vice-versa. The things that help me the most with my Fibro are: lots of sleep, rest when needed, excersize (but not too hard), muscle relaxors (Zanflex), Arthretec (Cytotec + and an NSIAD), and Lidocaine 5% patches that I cut in strips and place over the painful areas to numb them. I am also on pain meds now for my Bladder, and they certainly help with Fibro symptoms too. But, since it took me over 5 yrs to get them, I had to find other ways to manage until then, and though I had trouble managing my bladder, my Fibro was well controlled for the most part with the above.

    For me, certain things send my Fibro into a tailspin. I have learned to watch these triggers and try to avoid them at all costs. They are different for everyone but, these are pretty common for all Fibro patients: any excertion beyond normal. By this I mean, that used to, when I had a good day, I would try to clean the house from top to bottom and do yardwork, etc. But, I have learned that when I do things like that, I will pay for it for days to come, and sometimes for a week, by aching all over and being in Fibro hell. So, now I dont do that. Instead, I try to do a little each day instead of doing big projects at one time. Like today, I might vaccum and dust. But, if I do that, I wont weed the flowerbed. I never do 2 physically taxing things in the same day. Also, if I miss sleep and have an appt. I used to try to suck it up and go. Now, I dont. Now, I cancel the appt and sleep, b/c if I dont, I will suffer all week.

    I hope that you find what works for you too! Sorry to hear of your d/x.

    Hope this helps!



    • #3
      I have it too

      *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.


      • #4
        Hi Ouchitis..yes,, I was diagnosed with Fibromyalgia years ago and now have been joined by IBSc and IC. What a dance to figure diet!!!! You are not alone.


        • #5
          I was dx with IC in Jan 07, after years of trying to find out what was wrong with me. Last month dx with PFD, and now they think I have Fibromyalgia. I ache all over ( my ankle, wrist, back, knees). Sometimes it feels like someone is poking me with a hot iron. I feel great when I go for a walk, but when I walk too much I really hurt the next day or that night. I also feel tired all the time. I was having trouble sleeping but the uro put me on Zanaflex for the PFD and they help me sleep at night. Who knows just something else to add to the list..
          Meds on now:

          dextro 10mg

          5000mg Vitamin D- when tested, I was sooo low.
          Compound Hormones- Had hysterectomy when 24, ovaries out 37

          At night:

          4mg Zanaflex- Fibro & PFD
          plendil- Raynalds

          I have Fibro, IC, IBS, PFD, Raynauds.


          Past Meds
          Lexpro- changed to Cymbalta for better pain relief –off both
          Ultram – three times a day. Helped , I was tired of always being so tired.
          Elmiron-took for a year-
          Topamax-Did not need anymore since on dextro.
          Atarax- did not need anymore

          Pictures: Hubby & Me, Ozzy, My three Sons!!
          What a proud Mother I am!!



          • #6
            I too have been told I have fibro although was never given anything for it. I did go to a massage therapist for a couple of years until I started working unbelievable hours in radiology. I no longer work, but haven't started going back to the massage therapist. I did go to physical therapy for a while which really helped. Unfortunately my pt moved and they are not going to replace her.
            West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
            [email protected]


            • #7
              I have never been diagnosed with fibro., but the way I feel sometimes as if a truck ran me over again and again and the aches and pain, I can almost bet you that this is my problem.

              Sending hugs, Trishann


              • #8
                I too have IC, IBS, PFD, VV, and fibro. What a depressing list. I am coping, but there are definitely good days and bad days. I have found that getting up and doing some movement does help.


                • #9
                  I too have IC, IBS, PFD and Fibro & Lupus.


                  • #10
                    I would venture a guess that this list will become very long, very quickly! It seems like practically everyone here has fibro (aren't we a lucky group?). Anyway, count me in!
                    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                    Wishing you happiness and good health, and all the best out of life.

                    Peace, Carolyn

                    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

                    On the Beach with IC


                    • #11
                      I haven't offically been dx with it, but my sister, who has it, pressed on the trigger points on my body, and out of 18, I have 16 at last count. So she said I might as well have it. She told me next time I go to the doctor mentioned this to him, but I don't really want to add another illness to my list that is already long.


                      • #12
                        I know what you mean Mary. I have been getting really sore ALL the time lately. I mentioned it in a post and a couple of people brough up Fibro. Because it seems so common amoung us w/ IC I wouldn't be surprised but I'm kinda afraid to even ask a dr what they think. I don't want to have anything else wrong with me so I guess I'll just watch and see how it goes.

                        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


                        • #13
                          You can add me to the list of Fibro patients here. I am seeing a physical therapist once a week and I also take Flexeril. I see a tiny bit of improvement. I also take small walks and warm showers. There are times when it's so bad I can't sleep. I have it mostly in my neck and shoulders and sometimes in my knees.

                          I have IC, Fibor, Endometriosis, PNE, Vulvovestibulitis, Celiac Disease........I think I have everything listed in my Signature. I don't have IBS (SOOO Thankful for that!)

                          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                          I also have some journals of my journeys, past and some present at:

                          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.


                          • #14
                            I've got it too, along with myofascial pain syndrome and chronic fatigue.
                            *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.


                            • #15

                              Also on the list for fibro along with IC and IBS.