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  1. #1
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    Permanent flare - Is this normal?

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    I just wanted to ask - is it normal that I don't really "flare", I just have have this constant burning feeling? It doesn't just really go away and then come back, it's permanent pain. Sometimes it's severe and I need to interrupt whatever I'm doing and lay down, sometimes it's moderate and I can manage to do my daily things, but it's always present. I'm always aware of it.
    Sorry if it's a dumb question, I just wanted to know if somebody else experiences the same.

  2. #2
    ICN Staff ICNDonna's Avatar
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    Re: Permanent flare - Is this normal?

    During my early months with IC, it was pretty constant. Once I found my diet triggers and learned which treatment options work best for me, then I began to feel better --- so I guess I could say that at first I had a full time flare. Now a flare is not very common for me --- you will get there. Are you following an IC diet?


    Donna
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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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  3. #3
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    Re: Permanent flare - Is this normal?

    Thank you for your reply, Donna.

    I began following the diet a few days ago, but it hasn't been easy and I've already cheated twice, since my mother usually cooks for the whole family and she can't remember so well what I can and what I cannot eat. Starting from tomorrow I will cook for myself and be more serious about it.
    As for the treatments, I've been on Elmiron and Elavil for several months, but haven't seen any noticeable improvements.

  4. #4
    ICN Staff ICNDonna's Avatar
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    Re: Permanent flare - Is this normal?

    It can take several weeks before the diet really helps --- I'm glad you're going to be sticking with it.
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    Living with IC Video Series: http://www.ic-network.com/conditions...-video-series/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.
    [IMG]

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

  5. #5
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    Re: Permanent flare - Is this normal?

    Hi valemeow, it will take some to adjust and get to know better diet options. Hopefully with time the flares will lessen, just stay strong.

  6. #6
    ICN Member Mothergoose's Avatar
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    Re: Permanent flare - Is this normal?

    I was like that for a very long time, till I followed the diet stricklty for a few months, no meds worked with out following the diet.
    My are with you all. May you all find a way to peace and joy in your lives.

  7. #7
    ICN Member Clevsea's Avatar
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    Re: Permanent flare - Is this normal?

    Quote Originally Posted by valemeow View Post
    I just wanted to ask - is it normal that I don't really "flare", I just have have this constant burning feeling? It doesn't just really go away and then come back, it's permanent pain. Sometimes it's severe and I need to interrupt whatever I'm doing and lay down, sometimes it's moderate and I can manage to do my daily things, but it's always present. I'm always aware of it.
    Sorry if it's a dumb question, I just wanted to know if somebody else experiences the same.
    I am in a Permanent FLARE too. It's been 5 years of pain for me. I have a half day of no pain about 1-2 days per year. I can't sit, can't stand, so I lay down all day too. I can push myself to a special event.

    My pain definitely took over my life. I haven't even been able to post on here for the last year or so. Too sick for the computer even let alone living life.

    When I finally got some help with pain medication the CDC went crazy with 1 billion dollars and started a campaign. Then they were given another 6.5 Billion to share with another agency and they are trying to make us all afraid of getting addicted and they are fibbing about the statistics too.

    Jill, the owner here, wrote in her magazine recently in a full edition on this topic and to sum up (or paraphrase) she said when did the CDC guidelines become LAW? Doctors are afraid to treat the pain of IC and they are choosing not to.

    This seems like good information on "The Top 10 Myths of Chronic Pain. https://www.hss.edu/conditions_10-my...ronic-pain.asp

    I have longed to get on here and read the forum but I've been too ill to do so.

    Here are some statistics that I got from Jill or another source:
    5 million addicts in the USA
    150 million chronic pain sufferers, non-cancer in the USA

    You see the wide difference?

    Who will advocate for the chronic pain patients? I have signed some petitions and letters to lawmakers but we are so sick that even that can be hard for us to accomplish. I feel like we are isolated in our homes in dire pain.

    I do not mean to sound rude or unfeeling or crass with what I'm about to say and allow me to pre-empt it by saying I myself have 13 friends and relatives who are dead from alcohol or drug overdose/misuse but, all the same, I'd like to point out that in many cases the problem solves itself, because they die.

    As the 5 million addicts die off the 150 million innocent pain sufferers go right on having daily, debilitating pain and it is getting no news coverage at all.

    Yet every night on the news I hear a news story about our "Opioid Epidemic" and I'm so sick of it.

    As far as falsifying death certificates; a very reliable source told me that they are including adverse reactions, allergic reactions and that kind of thing to bump up their numbers. If a heart attack is fatal and morphine was used at the end of life they add that death to the opioid addiction epidemic we supposedly have in the USA.

    I was told 30 years ago in Pharmacology Class that the world has always had addicts and a certain percentage of the world's population will gravitate that way and allow opiates to run or ruin their lives. Think back to the Opium Dens from thousands of years ago.

    What the CDC is calling "guidelines" the other politicians and MD's are considering "law" and some laws have already changed.

    Every year I have to do Pharmacy Continuing Education and because I'm in pain I concentrate on the available classes on pain management. I was trying to alert everyone years ago this was coming and folks tended to ignore me.

    I know we have to fight back but when you are too ill to crawl over to the computer and participate it makes it difficult.

    What started as "Pill Mills" are now GONE. What started as people misusing prescription pain medication for fun or profit has now been exposed, over-exposed in fact by news coverage and has the doctors in my state too afraid to write prescriptions.

    In fact, my state already lowered the amount of opioids one can have per month based on the CDC guidelines.

    When did guidelines become laws?

    I wanted to chime in and say that it's my CE time again so I will once again be hearing information from Pain Management Pharmacists who are Doctors in Pharmacy whose audience is fellow pharmacists. That is what helps me keep current on what is coming next.

    I need to add that I follow the IC diet perfectly. I do many, many self help things too.

    Thank you all.

  8. #8
    ICN Staff ICNDonna's Avatar
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    Re: Permanent flare - Is this normal?

    Have you tried keeping a diary, noting time of day, everything that goes in your mouth, urinary frequency and about how much each time, activities, pain levels --- even clothing worn, personal and laundry soap, and toilet tissue --- to see if you can find any triggers by reviewing the notes when there are changes in pain levels.


    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    Living with IC Video Series: http://www.ic-network.com/conditions...-video-series/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.
    [IMG]

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

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