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Monday, June 25, 2012


I have only looked at 2. It was too frustrating to watch more.

The first talked about how pain is only temporary. It was supposed to be inspirational. It was not.

The other was a 5 minute video:

It was the same old regurgitation of: pain is a result of lifestyle, emotional and psychological issues/incidents. Change your lifestyle, change your outlook and viola you will feel better.

The presenter suggested diet, activity levels, lifestyle may contribute to your chronic pain. Okay. I will agree to that, on at least some level.

She continues by stating you can 'retrain" your brain.

This is not a new concept. The explanation by some is that the brain learns to keep the pain. If we could retrain it, break the connection(s), we might be able to reduce or stop the pain but...

That is not what she is talking about. Her 'retraining' is looking at "contributors" to your pain experience, how your thoughts and emotions affect the nervous system. This part is legitimate. I think most of us are aware the pain may be worse when we are stressed or anxious and better when we feel relaxed and happy.

The unfortunate part is she goes where those who want to diminish the real, medical, legitimate truth of chronic painalways go.

She suggests looking deep into yourself to see what was happening at the time the pain started and how that may have influenced the developing of the pain. She feels that there are connections between, say, a trauma (emotional, psychic) that happened and the pain starting/worsening.

This is the same old hogwash: it is a psychological issue. Find the trauma and you find the key to the pain.

I moved to NYC 6 months before the pain started. Shortly after arriving I became depressed, for a variety of reasons: new city, no friends, a job I hated.

I wondered, for years, if the depression caused the pain, at least to start. The only problem with that scenario is that my pain is the result of a birth defect. I did not know I had it; and even if the depression allowed for some form of reduction of my brain's ability to fight the effects of the defect, it was not to 'blame' for the trigeminal neuralgia. Because of the birth defect and dozens, if not more, of extra tiny thin blood vessels throughout the left side of my brain, this was going to happen. If not then, then soon.

My family, to this day, think, even after 12 brain surgeries, this is a farce, I am merely lazy, a malingerer. I enjoy not being able to work.

If this is the reaction to a proven disorder how much harder for those who live with fibromyalgia or CRPS that has no proof for its presence?

When it is surmised that cancer is a result of poor emotional/psychological health the naysayers come out in force. No, it is not! It is the result of cells going crazy. No one says your M.S. or Lupus or diabetes is the result of your thoughts. For the first 2 they may say 'yes you have the disease but your pain cannot really be that bad.' For the latter, I do not think I have ever heard it tied to the person's thoughts.

At what point does our disease, our 'disorder' become on a par with all others? What must we do to have the word 'disbelief' removed from the vocabulary of those who talk (and sometimes treat) chronic pain?


  1. I don't think we will ever conquer some people and their beliefs. Those kind of books and videos sell well to people. Just like 'think yourself thin" or "think yourself rich" But we all know that you can't suddenly find a few million in your bank account, just by thinking it. Just like we all know that you can't lose weight and eat huge amounts all the time. Nor can the chronic pain disappear through thought alone.

    If only they wouldn't go down that road of making us feel it's our fault, they might help us. Attitude helps, lifestyle helps, but the pain is real and won't just go away.

  2. Liz, That is the crux of it, trying to put it on us.

  3. It is sad to see such oversimplification of the problem. The whole issue of what is pain cannot be adequately explained by medical models and theories that had their origins in the days of radios operated by "vacuum tubes". Pain and other complex sensations would more accurately be understood with the theory of the "LCD" (Liquid Crystal Display) concepts that drive the use of today's computer and hand held devices. Those use transistor logic that is a far cry from the medical models that have persisted with more refinements of old theories since the 1930's and 1950s. We desperately need application of 21st century science and knowledge to the problems of pain.

    And by the way, there are situations where "chronic" pain is in fact a warning of persistent and deleterious tissue damage , as when a person with a gradually degenerating disc or series of discs accelerates the process by too much physical stress on the degenerating problem. "Modern" medicine has yet to be able to distinguish between this and the pain that is not a harbinger of tissue damage.

    And as for CRPS, it is absolutely incredulous that anyone could say that those objectively measurable skin changes are all made up in the brain!

  4. Pain with dignity. I agree wholeheartedly. It is something about which I have written previously, mainly because of my own refusal to accept or realize that not everything that I feel in the area of the pain, or even elsewhere, is not related to the pain but maybe could actually have smething else wrong.
    Re Crps and others or just made up.
    Thaks for your commenting. Carol

  5. I actually believe that to some degree your thoughts influence pain levels, stress/ anxiety always makes mine worse, but so does the weather.

    It makes me sad to see how some people have very little understanding of CP that they always assume the same generic thoughts, you are just lazy, or making it up, like getting out of work and being isolated.

    They think the problem is imaginary. As if not being able to go out, or go to school, or even work is something you enjoy doing. It isn't. I think that chronic pain can be controlled, and I also believe that exercise will definitely make it worse at first--but it does actually help in the long run.

    I went through a few months in a chronic pain program once at age fifteen and again at eighteen where I seen the benefits of what I'll refer to as a lifestyle change for lack of a better term.

    I think it is silly--ridiculous to say that by simply changing your diet or exercise levels or thoughts you'll be cured. All putting those things into practice does is (at least for me) help with living in pain.

    I think the key is to pain is to stop looking for a cure honestly, finding ways to live with chronic pain, not just survive it is what will help. That's just my opinion. Great post. :)

  6. Jane. Thanks.
    I agree with you that at some point you may have to accept it (my problem is after 30 years I still can't, or won't).
    Definitely, depending on the kind of pain and reason lifestyle change can definitely improve your life.
    I am glad that some of these things have helped you.
    I think its a good opinion, Jane.

  7. I think there are always going to be snake oil medicine shows, even on youtube, but there's also some good ones on there about chronic pain and medicine. Easy enough to pick you, they are usually selling something of course. I have lupus and even with a diagnosis of a painful connective tissue disease, still there's lots you can't see (I look fine most of the time) so I hear it all. If only you would eat this and not eat that. Exercise is all you need. Etc Etc.

    Ignorant people are blissfully unaware of how ignorant they really are. There's no telling them..they usually aren't listening.

    Glad I found your blog. I like the honesty.

  8. Well said Julie Jo.
    I am too. Thanks.