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  • IC an auto-immune disease?

    I am not sure where I should post this....hope this is okay.

    I have been going to a pt because I fell on black ice and landed flat on my back on our cement porch. I am just blessed that I didn't break anything. I have whiplash like you wouldn't believe.

    My pt asked if I had any other health problems and so I told her about my IC...anyway, at my last appointment I told her how I was still very sore all over and it has been over a month. She told me that IC was an auto-immune disease, that it was related to chronic fatigue, and fibo. I hadn't heard that before. I have tried to research it and find out for myself, but I haven't found anything about it. Has anyone heard this before????

  • #2
    No one knows what causes IC. There are some theories that an auto-immune process can contribute, but nothing has been proven. However, IC does seem to cluster with chronic fatigue syndrome and fibromyalgia, which is an interesting correlation. Again, no one knows why that happens.
    ****
    Jen

    *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.

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    • #3
      Jen is right. There really isn't any known common cause for IC. One theory is that there can be different causes for IC.

      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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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.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

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      • #4
        I have been told the same thing... that many conditions fall under an auto defiency umbrella including fibro, IC, IBS, and others.
        Faith is not believing God can; Faith is believing God will!

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        • #5
          There are some researchers (and the number is growing recently) who suspect IC, along with some other diseases, may be an autoimmune disease.

          No one knows for certain, however.

          If this is what is now believed, perhaps this will lend a little legitimacy to our disease, perhaps our disease will be taken a bit more seriously, along the lines of rheumatoid arthritis or lupus.

          I have seen sufferers of those diseases receive sympathy and help from doctors and others, so perhaps now IC will be treated in a like manner.

          Another thing to hope for is that there seems to be some research in general going on in the field of autoimmune diseases - perhaps we can hope for a breakthrough in the general field, that will perhaps apply to our specific disease (if it is indeed autoimmune.)

          Of course, it is likely that IC is actually a cluster of diseases, all under the same umbrella.

          No one really knows much of anything yet, I'm afraid. We are all kind of waiting and seeing, but much research is going on and we have reason to hope there will be a breakthrough.

          Blessings,
          Lori

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          • #6
            Thank you all for your insight. I am still learning how to deal with this dredful disease. I have moments where I think that I can deal with it and, have a great attitude...and others where I am just sick of the pain, urgency, pressure, and feeling like I am worthless. Okay, today is one of those days. Thank you for your insight, and info, even if we don't know much about IC, thanks for sharing what you do know.

            Oh...btw, just to let you know...I took some of your advise, and advise of some of my friends and family here, I broke down and got on anti-depressants. I do think that it helps...just having a bad day.

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            • #7
              Hi, Mydimples, good for you! Antidepressants won't fix the IC or take your pain away, but at least you won't have depression to deal with besides the IC and pain. Every little bit helps, when your cart is overloaded! If you can take even one item out of that cart, the cart will be easier to push. Relatively speaking.

              IC is a very tough disease to live with, especially when your symptoms are not yet under control. Has your doctor tried to help you at all with any of your symptoms? Is he willing to send you to pain management, or are there any medicines he is currently having you try?

              Blessings,
              Lori

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              • #8
                I`m no doctor but I do think it is autoimmune. I have CFS and FMS also. I remember it took so long before they said that was autoimmune related. If you have one autoimmune disease, you usually have others also. They overlap so much. Also, many people with Fm and CFS end up having IC. In books I have about both, IC is in many of them because people get it so often with these diseases.

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                • #9
                  MYDYMPLES

                  HAVE YOU EVER TRIED PAIN MANAGEMENT SPECIALITSTS? THEY HELPED ME WITH MY REMISSION ALONG WITH 12 DMSO TREATMENT FROM THE UROLOGIST

                  JUST SOMETHING FOR YOU TO THINK ABOUT

                  HUGS
                  MARY
                  NEW YORK YANKEES ROCK THE HOUSE. 26 WORLD SERIES CHAMPIONSHIPS, THE MOST EVER\

                  GO YANKEES
                  :woohoo: :woohoo:

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                  • #10
                    Thank you all for your responses, and advise. My uro has not even mentioned a pain management specialist. I have an appointment in the morning with another uro. She is the only female uro in utah. It took me 3 months to get into see her. I work at a local hospital, and I hear nothing but rave reviews about her.

                    My uro doesn't seem to get that I will have flare ups from time to time. And, sometimes I feel like he is treating me like a drug addict when I ask him for even just ultram to help me deal with my flares.

                    Right now, I do rescue instillations with litocane and heprin, I take Amitryptiline (sp?), hydroxizine, and I just started to take desert harvest aloe, and glucosimine...I sure hope it helps.

                    Thanks for bringing up the pain management specialist...I will see what this new uro does to help ppl manage their pain.

                    This disease is very difficult to deal with, I REALLY want to go to school to be a RN...I really have the heart for it...I am just not sure that my body will cooperate. My husband does want me to take on to much, and really send myself into a downward spiral with my IC.

                    Okay...it is late, and I am rambling...I am at work, so I better go. It is so nice to have you all here to talk to, you all have been where I am at, and know exactly how I feel. That is such a huge comfort to me...thank you from the bottom of my heart.

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