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  • Sarojini
    replied
    Yes, Lori, I think you're right. I don't think they can predict pain levels ahead of time, but yes, I do think they are referring to the difference between people's perception of flare pain.

    Leave a comment:


  • ICLori
    replied
    Thank you so much for trying, Jen! I know how busy you are at work, and I appreciate the time and effort you expended trying to find this out.

    I've been trying to guess what they meant by cognitive factors predicting the levels of pain...what I came up with for a guess is this:

    Maybe what they meant is, given exactly the same painful stimuli, one person will report more pain than the other, because of different cognitive factors (how they perceive pain, etc.)

    Do you think that might have possibly been what they meant? Otherwise, it doesn't seem to make much sense to me.

    Blessings, and thank you so much again,
    Lori

    Leave a comment:


  • Sarojini
    replied
    Lori, unfortunately we do NOT have access to this journal from our library... it's sort of obscure, so that's why I wasn't positive about it in the first place.

    Ugh... I hate it when that happens.

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  • ICLori
    replied
    Thank you so much, Jen, I really appreciate it! I think that others might be interested in reading the whole thing, too, if it could be e-mailed to us.

    I'm just curious because I've had several doctors over the years (most of them just lately) telling me it's essentially mind over the body - that I could use the power of my mind to think my pain away.

    Now, I already know about relaxation techniques to take some of the stress out of the pain, and distraction techniques to help me focus on other things and ignore the pain, but I haven't been able to actually reduce the pain level, it seems to stay the same.

    So if these people know of a way to do that - to make the pain go away without meds - I really want to know how!

    I agree with you that the word "predict" doesn't seem to be an appropriate word here, unless they really truly CAN predict, before it happens, the outcome and pain levels of this disease.

    Blessings, and thank you so much,
    Lori

    Leave a comment:


  • Sarojini
    replied
    Lori, I don't know if that is what they mean... the choice of the word "predict" in that context is not that good in my opinion, for the reasons you smartly described! To my knowledge, there really is no way to predict how someone's going to react to something even if they've had a thorough psychological exam...

    So, what I'll do is try to get the entire article when I'm at work tomorrow from the medical school library. We may have full-text access to this journal, and if so I will be able to read the article as a whole. That often helps; the abstract is just a summary of what's been done and, because scientists are human, the abstract is not necessarily always well written... LOL

    I will let you know if I am able to get access and can send you the article via email if I am and you would like it. However, we don't have access to all journals, so it's possible all we have to go on is the abstract... I'll keep you updated.

    Leave a comment:


  • ICLori
    replied
    Thanks, Trishann, I do feel better today. My bladder is a little better, and I'm starting to feel a bit less shell-shocked, I'm starting to return to normalcy.

    Have my pre-surigical appointments early tomorrow (hope it won't be snowing or sleeting for the drive in) for the lumpectomy I'm having on Friday.

    Blessings,
    Lori

    Leave a comment:


  • Trishann
    replied
    Hey Lori, hope you are feeling better today. Well I am going to get off the computer and shut it down.

    Prayers, Trishann

    Leave a comment:


  • ICLori
    replied
    Thanks, you guys! Sarojini, that explanation makes a lot of sense. I just still am wondering how pain levels can be predicted by cognitive factors.

    What I mean is, they can predict in advance, say, before a woman even has IC, what her pain levels will be, solely based on what her psychology is, and without taking into account at all whether she has a mild case of IC, moderate, or end-stage?

    That's what it seems to be saying, when they say pain can be predicted by cognitive factors.

    I really feel as if this is kind of blaming the patient for being sick. You know, if we just had better attitudes/coping skills, none of us would need any meds...that sort of thing. Am I reading it wrong, though, interpreting it wrong? Does anyone else feel that is what they are really saying?

    Blessings,
    Lori

    Leave a comment:


  • DaniBelle
    replied
    Hyperalgesia

    Go to www.wikepedia.com. Search the word 'Hyperalgesia'. It's a brief description about how some people's nervous systems get extra signals from the brain which cause more pain. There was a story on 20/20 or one of those programs about this. One woman they interviewed had once been a ballet dancer. She pulled a muscle in her thigh one day and 6 months later was in a wheelchair. No one believed (except her husband...that's a new one!) she was really experiencing such excruciating pain, because all the doctors could find was the already mended pulled tendon. No pain medication eased her pain effectively. It turned out she had this "Hyperalgesia". She is on nerve/brain medications now (Neurontin, etc.) and is able to walk finally after years of being curled up in a fetal postion on her bed. How awful is that....talking about doctors not listening to patients about their pain....she had the worst case scenario if I've ever seen one!

    Dani

    Leave a comment:


  • Sarojini
    replied
    "Self efficacy" is a term they are using to describe the set of mental skills you use for coping with pain. If you have a good set of mental pain coping skills in place, you will report less pain -- you'll still report severe pain, just not as bad as someone who doesn't have these same coping skills.

    Severity of depression is just that... how severe the depression is. This abstract suggests that how depressed a woman gets during painful flares is related to her pain level, her own internal ability to cope with pain, as well as how much "self-stigmatization" she does -- you know, that thing that can happen when you're in a flare where you say, "I'm so stupid, this is all my fault, I must have eaten something bad or done something bad. I can't believe I have this embarrassing, stupid bladder disease..." (You put a stigma on yourself for having IC, essentially)

    Leave a comment:


  • Trishann
    replied
    I don't understand the article either. I think if they truly want to know about what people are going through with IC, they should take their time and listen to people who has it. I read an article awhile back that said some people will have more pain because of their body. Something about their body is more sensitive to pain, I wonder if they ever thought about that. I wish I kept that article.

    Just like I'm very sensitive to medicine. It seems like everything I take have some major side effects. Others can take these medicine with no problems. When they do articles do they think about that?

    Some people hormones completely goes out of wack after having surgery, I am one of them. Do they consider about this issue when doing an article.

    Sometimes we just can't take these things personal, which is hard to do, but they don't know everything what is going on with each individual.

    That is why we have to stand up for ourselves and just keep trying to do our best and not expecting everyone to understand. We have to remember just because someone can't understand that does not make us wrong.

    I have to be thankful for those who do and for those who came into my life and shared their wisdom with me.

    Sending hugs, Trishann

    Leave a comment:


  • DaniBelle
    replied
    Sorry....

    I've done it again...I write such long posts. Just imagine what it would be like with me in person!!! I don't get to talk to many people, so you ladies are the only ones!

    One more thing I thought of that would 'help' those quiet hubbies....a T-Shirt that says "I hope you feel better soon". That way he wouldn't have to take the time or thought to say it....but I could respond and say, "Thanks sweetie, it makes me feel better knowing you care". Then he would get in a habit of it?????? Just a thought.

    Leave a comment:


  • DaniBelle
    replied
    All I know is the experience of.....

    ...dealing with pain for most of my life has made me a very compassionate person. Even when I'm at the doctor's office, waiting for my instillation, and see an elderly person stuggling, either confused in trying to find the right floor of their doctor's office, or trying to pull open a heavy door, I totally forget my pain for a moment and make sure this precious person is helped in the best way I can. If I see pain in someone's face who's waiting to see the doctor, but their appt. is scheduled for after mine, I ask the desk person to please let them go ahead of me. I'm not bragging that I'm some sort of superwoman sweeping in to help those in need, but I feel it's my duty and my deepest wish to help those in need. Aren't you just dumbfounded to see a 20'ish young man rudely rush past a person to get into the elevator while the elderly person is struggling with their oxygen machine. I wan't to do the "Vulcan" shoulder grip on that hooligan! Anyway, I'm just saying, pain is the great equalizer. Those who've not experienced much physical pain in their lives don't have the capacity to understand. They could study 1,000 textbooks in med. school about the nervous system and the effects of pain on the body and mind, but never really understand. Wouldn't it be something to have these uncompassionate doctors who say "Just get out of your rut and exercise...that will help you and your pain will 'go away'" Yeah...I believe that, uh, huh..you dolt!. My sister-in-law, who's a nurse, told me I needed to go for walks to get my circulation going, then the pain would go away. She does not understand and neither does my husband (it's his sister I was just referring to...his whole family is like that...as I mentioned in a previous post). I think, before a doctor can start practicing (no matter what specialty they're in), they must be inflicted with all sorts of pain. Men should be cathed and inserted with a bad bladder infection.....and no meds for pain or antibiotics for at least 1 week. Just a suggestion. I think most of the doubters would change their minds within....lets say....20 minutes??? Don't you think??? If only they would do this. Speaking of hubbies, I just told mine that I have to get my yearly B.E. (Barrett's Esophagitis) endoscopy this week. I'm overdue and am having trouble swallowing. The main purpose for the test is to check for suspicious tissue (pre-cancerous), so it's not a test just for the fun of it!! My husband asked me why I thought I needed to have it done. I repeated what I just wrote to you and there was no response. Not....I hope it's clear.....or "If I could change my business travel plans, I would take you". NOTHING!!! I'm so sick of his attitude...Yes, he pays all the bills (I can't work anymore and miss my job terribly) and cooks dinner when I just can't get up the strength. If he would only say once in a while "I hope you feel better"....it would make all the difference in the world!! The emotional part of dealing with this pain is so difficult. It is so lonely, but I am so blessed to be able to talk with all the wonderful ladies on this site. For that, I am truly blessed. Oh, my nurse (who is an angel...really), got me worked in to the pain mgt. doctor next Monday (one week earlier), so once my pain is under control, I'm going to look into a job where I can be a patient advocate at the hospital. From what I've seen and heard from my many ER visits, people are lied to, treated like trash, treated like they're liars, etc.. it's sickening. I want to find out how I can help the helpless who come in there with no one at their side. Boy, have I got some true accounts of my local ER and how awful they are to the patients. You wouldn't believe it. Who ever wants to know, just PM me. OH BOY!

    Have a pain free, God blessed day!


    Dani

    Leave a comment:


  • ICLori
    replied
    P.S. Can someone really smart please tell me what on earth the following means? Does it mean if we have a good attitude, most of our pain goes away? Or that the levels of pain are tied more to our moods than to any physical thing? Or...?

    Furthermore, the pain and depression experienced by IC patients may be predicted by cognitive factors. Severity of pain is associated with self-efficacy for coping with pain. Severity of depression is associated with pain, self-efficacy for coping with pain, and self-stigmatization.

    Leave a comment:


  • dancemomof2
    replied
    Thanks Lori, I would also like to read the whole thing.

    Leave a comment:

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