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Why does fibromyalgia need a catastrophization scale?

Discussion in 'Fibromyalgia and Connective Tissue Disorders' started by Milo, Oct 17, 2018.

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  1. Milo

    Milo Senior Member (Voting Rights)

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    Often time when i read research literature, i notice how researchers use the catastrophization scale with the fibromyalgia community and in the chronic pain community.

    You can read about how the catastrophization scale was built here
    http://sullivan-painresearch.mcgill.ca/pdf/pcs/PCSManual_English.pdf

    Here are a few quotes:
    1) Catastrophizing is currently defined as:
    “an exaggerated negative mental set brought to bear during actual or anticipated painful experience”

    2) Factor analyses of the PCS have shown that catastrophizing can be viewed as a multidimensional construct comprising elements of rumination (“I can’t stop thinking about how much it hurts”), magnification (“I worry that something serious may happen”), and helplessness (“There is nothing I can do to reduce the intensity of the pain”).

    It seems to me that catastrophization scale measure mental and emotional distressas it relate to pain and pain anticipation. Does it have much value in moving forward as we now have evidence of widespread brain inflammation from PET scans?
     
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  2. Andy

    Andy Committee Member & Outreach

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    I think the likely answer is that as more is discovered about the biomedical processes that underpin fibro, any scale, such as this, that is obviously a psych tool to justify the psychs own beliefs about the illness will slowly fall out of general use.
     
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  3. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I agree, however it is dependent on funding being secured for biomedical research rather than psych/behavioural and we all know problems there.
     
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  4. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Yeah, I ask myself the same question...

    In a poorly understood illness like FM or ME/CFS there seems to be no way of knowing if a patient is catastrophizing or that the disease is just much worse than the medical profession thinks. It is strange how little psychologists are concerned about this.
     
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  5. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    A good example of this the Tampa scale kinesiophobia for CFS. http://www.paininmotion.be/EN/sem-TSK-CFSEnglish.pdf It ask questions like: “If I were to try to overcome it, my symptoms would increase” or “my symptoms let me know when to stop exercising so that I do not harm myself”. Agreeing with these statements are seen as an indication of an irrational fear of exercise, instead of PEM. So the questionnaires measures symptoms of a poorly understood disease and then calls it dysfunctional beliefs.

    I think one could say the same thing about the catastrophizing scale. Statemets like: "When I'm in pain its awful and I feel it overwhelms me" or "When I'm in pain there’s nothing I can do to reduce the intensity of the pain" or When I'm in pain I can’t seem to keep it out of my mind." simply describe what it's like to have fibromyalgia.
     
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  6. shak8

    shak8 Senior Member (Voting Rights)

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    As a fibro-person, I know I will be doing a bit of catastrophizing when I am in a severe flare-up. It's a normal response to extreme pain and fatigue, etc. Suddenly one is having an extremely abnormal human existence!

    Certainly I've mastered catastrophizing (a lot) over an 18 yr history of having fibro.

    For all the listening to patients/clients that psychologists are supposed to do, these professionals seem rather dumb. There's a huge difference between mastery and acceptance during the onset couple of years of the illness.

    And regarding "doing things" and exercise. Personally, having fibro for 18 years, I've had no improvement in being able to carry loads of 10lbs without incurring undue pain in the days afterward. So, I limit that. I limit driving due to fatigue-pain onset by 2pm and necessity of pain meds (which may enable more functioning or less {due to fatiguing side-effects} depending on any particular day.

    The root of research and clinical care is or should be COMPASSION. Trying to understand the challenges a patient-client faces. Abstacting farcical conclusions is just stupidity and laziness. I prefer the technique of in-depth interviews.

    Perhaps the curriculum of behaviorial professionals should include rigorous courses in imagining pain and fatigue (and a host of other illness challenges) that the student must pass; otherwise, no professional degree. Amen.
     
  7. shak8

    shak8 Senior Member (Voting Rights)

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    Also, thank the gods, the Sullivan pain-"research" PDF is old and, I hope, out-of-date.
     
  8. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I think they need to learn that there is no way they can even come close to imagining a life of pain, unless they actually experience a life of pain. They need to stop being so flaming arrogant! By all means they may know more about the biology and disease processes than the patient, but until they are the patient their understanding will be limited.

    I lived with an ill parent who had to rest a lot. Not an ME patient. They had constant pain with additional, fairly frequent episodes of really severe pain. I could see they were in pain, awful pain. I could see how it wore them out. I could sympathise and as a family we did the best we could to make life bearable.

    One of my first and worst ME symptoms was pain. Now, it's not a competition, but I don't believe my pain is anything like as bad as my parent experienced. Despite years of living with, and helping to care for my parent, despite sympathy and understanding, I had no real idea of what it was like to be in constant pain. I had no idea what it was actually like to spend day after day in bed.
     
    Last edited: Oct 17, 2018
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  9. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    The other thing that strikes me - where does forward planning end and catastrophization begin.

    If you know you have a task ahead that will require you to dig deep to accomplish it, something you have no hope of doing on a less than a very good day, isn't it going to be on your mind? Is it not wise to plan for likely issues, or complications that might reduce your chances of doing what you have to do?

    Many of us dig really deep to achieve simple everyday tasks, like showering. I 've had sports matches that have taken far less out of me. Yet preparing for a sports match, working on you strategy isn't catastrophizing. It's preparation.
     
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  10. shak8

    shak8 Senior Member (Voting Rights)

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  11. shak8

    shak8 Senior Member (Voting Rights)

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    With fibro and not ME, I don't worrying about showering. Usually. Though I have bouts of vertigo at the mere onset of a cold virus.

    But I do worry about having an extended (week to months) flare-up where I won't be able to grocery shop due to severe disorientation (driving not possible). Even though such a severe flare-up hasn't occurred in 10 years, the fact that it is possible, scares me.

    I do spend my good hours (11am-2pm) getting food in the house and I can't lift much so i have to go almost every day I can leave the house. My social life? A brief walk, a trip to the library on alternate days.

    I feel so weird in that I am living a secret (fibro-limited) life. I hate to reveal my illness to others but when it is severe (the catastrophe) it is only honest to do so. But people (friends) are turned off by it; they can't possibly understand what it feels like.

    I hate feeling sick, feeling different, feeling limited.
     
  12. Milo

    Milo Senior Member (Voting Rights)

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    I believe it is more than stupidity and laziness. It is adding labels to patients who ‘claim to have pain and behaviors that are unhelpful to their recovery’. It is the psychologization of patients with fibromyalgia. And if you do not change your catastrophization behaviors, then it’s your own damn fault. It’s pernicious.

    There is a lot of brainwashing happening. I really hope that the Mass. general MRI study will shut everybody up in their track.

    Thank you for sharing your thouhts and experiences, @shak8 .
     
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  13. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I'm not saying catastrophization isn't a disabling and distressing issue, or trying to diminish the suffering it causes.

    However, from an ME patient point of view (with possible fibro overlap), I am wary of the idea of pacing and forward planning of activities being put down to catastrophization, rather than simply sensible forward planning to achieve what I need to while keeping myself as well as possible.

    It just highlights the dangers of lumping conditions together.
     
  14. Milo

    Milo Senior Member (Voting Rights)

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    Catastrophization is a construct, and they admitted it early on in the document i provided to you above. It allows them so called professionals to associate emotional distress to physicial symptoms of pain, and will help them determine whether a CBT program will help diminish catastrophization (and not the pain), which in turn kills any chance of research in the cause of the pain and FM symptoms to start with.

    That is why in Canada rheumatology dissociated from caring for fm patients, leaving them without a medical specialty.
     
  15. pteropus

    pteropus Senior Member (Voting Rights)

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    short answer: fibromyalgia needs a catastrophising scale, so that poorly trained psychology researchers have an opportunity to produce meaningless statistics, to justify their own false beliefs, and pretend that they are real scientists.

    same method applies for any disease that isn't yet understood - blame the patient.

    [in other words - what @Andy said in comment #2]
     
    Last edited: Oct 17, 2018
  16. shak8

    shak8 Senior Member (Voting Rights)

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    I can see how the idea of catastrophizing originated: a female patient with fibro, perhaps just recently diagnosed, with overwhelming symptoms of pain-confusion-and the myriad of other associated symptoms, walks into her docs office in tears and wails on about how she can't work, can't sleep, etc. That was me, in other words.

    Oh, perhaps she's society's dreaded and unappealing creature: overweight and middle-aged (typical onset is middle age).

    So, okay, maybe CBT might be helpful, I don't know. What would be better is learning from others who have the illness (a peer support group, that's important: not a multi-disciplinary group of non-sufferers, but a cohort of people with fibro who are compassionate with each other) on how to adapt and cope with it so that the catrastrophizing weakens into mere worry and the overwhelming emotions don't frighten GPs.

    So perhaps that GP sends the woman to a university clinic where she ends up in a study so that some poor bastard can get his/her Ph.D. Aha, the poor, not-that-bright Ph.D student says: I think I have a new concept: catastrophizing.

    Usually, and I would place bets on it, a life-changing and painful condition such as fibro takes YEARS to adjust to its losses, its curses. CBT might not be very useful and especially not early in the disease. Reassurance, compassion, support group: yes. Reality based advice such as: you may never find a form of employment that you can do. Keep trying though, if you like. But concentrate on what makes you feel better. Revisit your most favored interests that conform to your physical limitation.

    To me, castratrophizing is just a name for inflated worry (and a pseudo-field for useless psychic 'investigation').
     
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  17. pteropus

    pteropus Senior Member (Voting Rights)

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    ... and increased worry, comes from major life changes, while lacking information & resources to help you plan & cope.
    which is where peer support is helpful - discuss shared symptoms & concerns, discuss treatment & coping strategies.

    it's bizarre that normal sensible human responses to major life events, are so easily misinterpreted.
     
    Last edited: Oct 20, 2018
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  18. Milo

    Milo Senior Member (Voting Rights)

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    No @shak8 catastrophising rhymes with hysterical
     
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  19. aza

    aza Established Member (Voting Rights)

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    Many women undergo the same tortuous and torturous path of misdiagnosis and misunderstanding when entering perimenopause. A lengthy painful hormonal roller coaster that is often regarded as ‘the change’, as if this could explain, justify and solve it! Hormones are powerful molecules and hormonal withdrawal symptoms are extremely serious.

    Premenstrual syndrome and postpartum depression are already regarded as serious conditions, while menopause is still mocked by some medical practitioners.

    Hysteria cones from the Greek hystera, uterus. Once this organ becomes obsolete, as in menopause, women are nothing more than attention seekers, because their most important organ has lost its function.

    I suspect psychologists are just opportunists, like some “menopause experts”, they claim to know what is “wrong” with the patients by coining terms such as “catastrophize” and “the change”, which are merely descriptive and don’t explain anything about biological mechanisms. Why bother creating terms that don’t add any clarification to the matter? Creating labels and attaching value to them is the easiest way to claim possession of a product, or a patient. Very profitable business.
     
    Last edited: Apr 29, 2019
  20. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    To keep psychosomatic proponents in jobs
     

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