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living with pain

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living with pain

Posted by Dan Gottlieb on Jul 12, 2011 3:59 pm

many of us live with chronic pain and most of it quite severe. After a recent accident, my neuropathic pain has become much worse and appears that whatever improvement I could hope for is now past.
I posted about pain in various places in this discussion, but I think the topic is important enough that it should have its own topic.
I will post below and interaction I had with a member during a private e-mail exchange. I am doing this because their permission.
But I would like to open this discussion about chronic pain to go beyond medications and medical interventions to discuss how we live with something that is both chronic and, well, pretty painful!
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RE: living with pain

Posted by Dan Gottlieb on Jul 12, 2011 4:21 pm

this e-mail exchange from one of our members begins with any correspondence from her. She was reacting to one of my posts in which I described my different reactions to my pain. When I react with terror or fear, when I begin a story line about the pain, the pain gets worse. When I open up and feel the pain and feel compassion for my suffering body, the pain remains just as severe, but the experience of it changes. Here is her e-mail:

Dr. Dan, I am curios to know how this can be taught. You mentioned that you had just given in to your spasms, and let the stress become kindness...how do you do that? I get severe spasms from an implant surgery where they cut a wrong spinal nerve. The spasms have lasted (non-stop) for up to 12 days. I get irritable because I am jumping around like a fish out of water, I can't sleep, and I can't drive. I get very stressed. A few years ago, a friend took me to my neurologist because the spasms were making me crazy. The receptionist was quite rude, and I usually just blow that kind of thing off.  But not that day.  I was so tired, sore, drugged, and irritable that I let her have it. That is not who I am, and I don't understand how a different person can just emerge from me when I feel like that. A neurologist only gives me more medications to try. So, when I'm on a handful of medications, jumping like crazy, getting no sleep, and want to saw my legs off, how can someone teach me to not be stressed? How do you feel kindness in the midst of chaos??

My response comes next:

It breaks my heart to hear of anyone's suffering, but to know that what's happening to you seems to be relentless is just awful. And like anyone who cares for you, I so deeply wish for the end of your pain and the opportunity to reclaim the joy that is in there.

And you cannot do anything with what is happening in your body and you cannot do anything with the experience your body is happening, so please don't try to change that. You see, your body is suffering. In addition to that, your mind is suffering. Of course your mind suffers because of your body and your body suffers because of your mind. And there is nothing we can do to change the suffering of your body, but perhaps we can alter the way your mind experiences your body.

Your poor body is in crisis. It thinks there is something terribly wrong somewhere and it is reacting to its perceived threat. The fact that it is in constant crisis renders it exhausted and yet it can still get no respite because it thinks the crisis continues. And because it is in crisis, your autonomic nervous system gets involved and I am sure it affects your heart rate and blood pressure.
This poor body doesn't know there is no real crisis so it continues to react in order to save your life. This body that has been working so hard to keep you alive and functioning now has this extra burden. So when you are in spasm, perhaps you could just close your eyes and imagine what your body is experiencing. If it's pain, agitation, hyper reactivity – whatever, just imagine the experience. And perhaps you could begin to feel towards your body what I feel towards it right now; compassion, kindness and sadness for its suffering.

Now let's take a look at your mind. When we have pain of any kind, we tell ourselves stories about it. When my pain gets acute, I begin to tell myself stories that it will never change, my life will be compromised forever. And when I have moments of respite I sometimes tell myself that I have turned the corner. All stories and none of them have anything to do with what I am experiencing moment by moment.
When I have severe pain now, I close my eyes and let myself just feel the pain of imagining how my body is suffering.

Be kind to the woman you are. That doesn't mean self-pity or self-indulgence, it just means kindness towards this innocent body that suffers, towards this good woman who suffers. Nothing will change, your spasm will continue. But maybe excepting that nothing will change moment by moment will change everything.
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RE: living with pain

Posted by Dan Gottlieb on Jul 12, 2011 4:43 pm

and now her response:

Thank you for your reply.  You are welcome to post this in discussion, as I am sure I am not the only one with these type of problems.

You have such an amazing way of seeing what is so hard to see, especially when it comes to pain.  I will try my best to feel compassion, kindness, and sadness for my "innocent body" when the spasms seem endless.  I don't think that kind of mind training can happen overnight, but I do believe that it is possible to train the brain...with some help (hint, hint).

I feel pain every minute of every day, but I have learned to live with it and function quite well.  I am a happy person...most of the time.  The spasms are such a different kind of pain than the ordinary back or arthritis pain.  After several days of non-stop spasms, no sleep, and handfuls of medications, that different person emerges.  I don't like that person, and I want to learn to feel for my body rather than let the monster out.  Most of the time I don't realize that I am getting so stressed from the spasms that the other Kelley is emerging.  How do you suggest that I can first learn when this is happening so that I CAN learn to feel compassion for the suffering of my body?  So that I CAN close my eyes and imagine its experience?  Would it be similar to feeling empathy for a friend who is suffering?

Like I mentioned previously, the doctor's just give me more medications, and I am to the point where I will not accept anymore meds.  The different medications don't work anyway.  I like my liver and kidney's and would very much like to keep them as healthy as possible and in my body.  But, when the spasms continue for days on end, the medications that I take build up in my system.  I rarely have an appetite during these spouts, and without the ability to sleep them off, it is very difficult to rationalize with my mind.  I would really appreciate it if you could teach me what you have learned so that I can at least be myself during the long periods of spasticity, and be able to tell my mind that everything will be okay...eventually.

Many thanks and Blessings,



And mine:

Hello my friend,

I have to be honest and tell you that I feel that our relationship is a bit out of balance! Seriously, you have come to me and opened your heart about the nature of your suffering. You have entrusted me with your very personal experience and asked for my thoughts and experiences. You have given me as great a gift as someone can give someone else and all I have for you in return is a few ideas! You see, when you open your heart and ask me to help you with your pain, that act of trust actually diminishes my pain. And my guess is that if the tables were turned, you would feel the same way. Your focus would be on my life and how you could help me. I wrote about this in Letters to Sam in a chapter called: "Compassion Works Both Ways".

The problem with pain is that it demands attention. The problem with focusing on pain is that it makes it worse. Not only that, but when you do, you are not noticing the rest of your life. So when you finish this sentence, stop reading and close your eyes and think about what you are experiencing this very moment.

That moment might have been pain, it might have been curiosity, hope, boredom, confusion or any one of 1000 other experiences. But had you not closed your eyes and attended to your experience, you might not have known the wide range of what you were experiencing. So that's the other problem with pain demanding attention. Because when it flares up, your brain gets tricked into thinking that flair is there every moment of every day. I try to meditate outside every day. And when I do, I try to become conscious of the sounds-the birds and the breezes and even cars nearby.
And when I become aware that I have been thinking for the last few minutes, I notice that I have literally not been hearing any of the sounds in my environment. I could just hear the noise in my head.

So you are right in that training your brain takes lots of practice. I knew when guy many many many years ago who sat under a bodhi tree for five years to get his brain trained! I recommend you do this in very small steps. Set a little alarm on your telephone just to chime every hour. When it does, close your eyes and become conscious of what your body/mind is experiencing that moment. You will be amazed at everything you've missed.. This whole exercise could take 30 seconds and it actually begins the process of retraining your brain.

Lots of other steps after this, let's start here
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RE: living with pain

Posted by nanaboombala on Jul 12, 2011 6:10 pm

Wow dr. Dan.....with your permission ( and yours too, of course Kelly ) , I'd like to listen and learn here. I've dealt with neuropathic pain, and horrible spasms for almost thirty years now. I take many meds ( don't even know how I still have my kidneys, liver etc. )......but spasms particularly terrify me. They usually.....no always preceed the awful sharp shooting pains,that so completely take over my world, so that anything ( we're currently trying Zanex ) that can stop them in their tracks.....I'm going to try. I simply can't handle the pain, and as I'm sure you are aware.......you can't get ready for this kind of lightening attack.......narcotics don't touch them........anyway.......I don't mean to make this about me. I just wanted you both to know that I'd like to ride on your coattails on this one. I will practice right along with you Kelly...........and thanks Dr. Dan. I've already tried it, and the kindness that's emerged is so far superior to the anger that lurks in corners !
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RE: living with pain

Posted by sarah10 on Jul 13, 2011 5:18 pm

My husband, a C4 quadriplegic, has had good luck preventing nightly leg spasms (that kept him awake) by taking homoeopathic Cuprum Met. 10c, daily.  It is completely non-toxic.
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RE: living with pain

Posted by Dan Gottlieb on Jul 19, 2011 2:53 pm

there were many DVDs and CDs that help illuminate these points. But the whole issue of mindfulness meditation started at a hospital in Boston centered around pain. Everyone in the group had various types of  severe chronic pain. the group leader was a man named John Cabot Zinn who is probably the man credited with bringing mindfulness meditation from the East and helping it become a mainstream intervention here.

The book he wrote is called: "full catastrophe living" and not only does it explain how mindfulness literally rewires the brain, but it's also set up in workbook fashion with very clear assignments.

Love to hear if anyone has tried those exercises I suggested
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RE: living with pain

Posted by Admin on Jul 21, 2011 10:03 am

Living with ever-increasing paralysis in my legs, I have to compensate by using my arms to lift my legs.  Therefore, I am creating more pains in my arms.  Plus, I have an incomplete shoulder socket.  When I use the arm, it comes out of the socket, and causes intense pain down the arm.  Recently, my doctor gave me a prescription for Voltaren gel.  It helps.  Also, I take more frequent narcotics to lessen the pain.
Also, I have brain tumors.  I am currently taking chemo for 5 days per month.  That further complicates things.  I have to climb back up from the exhaustion and weakness that creates.
How do I do that?  Through faith.  If I didn't have that, I couldn't make it through my days.  There is a verse in ll Corinthians 4:16 - Therefore, we do not lose heart.  Though outwardly we are wasting away.  Yet inwardly, we are being renewed, day by day.
My faith lets me handle the problems with life.  I live one day at a time, and try to be an example to others.  Grace alone God will provide.  My son said my life is an example to others, because no matter what happens in my life, I never lose my faith.
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RE: living with pain

Posted by Admin on Jul 21, 2011 6:42 pm

Dr. Dan, I have a lower-thoracic spinal cord tumor.  I was in remission for many years.  Then, it started to grow again, so I had it removed...twice!  I had surgical complications, and ended up in a wheelchair. 
Later, they found tumors in multiple areas of my brain.  I had surgery to remove what they could, and am having chemotherapy to keep them "at bay"!  So far, the tumors are still not increasing.  I know that the long-term prognosis may not be good, but I go through my days with trust in God.  There is a verse in the Bible that says:  "Therefore, we do not lose heart.  Though outwardly, we are wasting away.  Yet inwardly, we are being renewed, day by day."
I know that God is with me, and will give me the strength to carry on...one day at a time.  Is it easy?  No, but we were never promised it would be. 
Recently, I questioned why God still has me alive.  My son said it's because I am an example.  No matter what happens to me, I still don't lose my faith.
I hope reading my story may give someone hope.  We are all here to help each other.    A quote from my pastor:  You go nowhere by accident; wherever you go, God is sending you.  Wherever you are, God has put you there.   He has you there for a purpose.  The Christ, who dwells in you, wants to accomplish something, in you, and through you, and by you, and for you, and for others.  Wherever you go and whatever you do, leave here believing this, and you will go in faith, hope, and love.  And you will go in God's grace as you give, and forgive, and receive and share God's blessings with others.
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RE: living with pain

Posted by Trish-411 on Jul 25, 2011 8:28 pm

Dan,

I am trying those exercises.  Better give me another week before I make a report.  I also have the book, “Full Catastrophe Living”.  So far I’m just sleeping with it under my pillow. 

I’m hoping to actually read it soon.  Maybe I’m afraid of what I might learn.  I wonder?

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RE: living with pain

Posted by Dan Gottlieb on Jul 26, 2011 11:49 am

the first step in dealing with chronic pain whether it is physical or emotional is recognizing that the goal is not necessarily to make it go away. The goal is to learn to live the life you have with equanimity and comfort.

So as I suggested in another post, we are embarking on the process of retraining our brains. Brains that are conditioned to react to pain as though it is an emergency. And when it is an emergency, we tell ourselves stories about the cause, cure and prognosis. Well, when pain is chronic, our habitual way of reacting is that we tell ourselves stories about what the pain means and when it will or won't go away and how we will or won't live with it.
All stories. And those stories are works of fiction. So let's take a careful look at what's really happening moment by moment.

John Cabot Zinn describes these techniques much better than I ever could, but begin by giving yourself permission to take 30 min. a day that is just for you. Put yourself in a position that is as comfortable as possible with your body as erect as possible.(you don't want to be so comfortable that you might drift off to sleep).

First, feel yourself in your body. Feel what parts of your body carry the emotions, what parts carry the pain and what parts are pain free. Just notice without stories.

And when you are finally comfortable that you are in your body and in your seat, just notice your breathing. Try to focus all of your attention on the in breath. Be aware of where you feel the in breath most-in your nostrils, your chest or your belly. Then notice how each in breath is slightly different.

And while you are doing this, be aware of how many times you are mind engages in thoughts and stories that distract your attention. Don't worry, that's what human minds do. Just gently bring your mind back to your breathing. Even if it is 500 times, that's okay. After all, the goal is not to quiet your mind the goal is to pay attention to your life.

Try to do that every day if possible. Let's see what happens
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RE: living with pain

Posted by CATHERINE H on Jul 26, 2011 4:51 pm

Thanks for this!   I’ve thought that there must be some way to repattern my response to pain &/or rewire our brain – I sent for Kabat-Zinn’s book (“Full Catastrophe Living”) & will try the exercise you described.  
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RE: living with pain

Posted by Debra_1939611 on Jul 27, 2011 11:05 am

I too have had bouts of severe spasms and resulting pain.  I know that most of this discussion has been about retraining your brain but I wanted to let you know that I have been prescribed Theramin and it has helped me immensely.  It is not a narcotic, it is protein based.
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RE: living with pain

Posted by Dan Gottlieb on Aug 2, 2011 4:16 pm

I have been thinking about my most recent entry and I realized that starting off with a 30 min. exercise may be to demanding on your schedule.
Of course if you could do this for 10 min. it would be wonderful. And even if you don't have the time or the patience for even 10 min., let me give you another exercise that will take even less time.

A few times a day check in with your body. Just stop what you are doing (you could even set an alarm for this) and take a deep breath and close your eyes. Then check in – notice the sounds around you and notice that you are hearing. Notice the sensations in your body. Notice your breath. Just feel how you are feeling. And if you can, notice whether your heart feels open or closed. Believe it or not, this whole exercise should take less than 5 min.

Anybody who is willing to go on this adventure with me, please keep us all posted about how it goes. Look forward to hearing from you next week!
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RE: living with pain

Posted by Jerod on Aug 31, 2011 7:41 pm

I am familiar with the author and the book you mentioned. If you do not read the book at least know that mindfulness meditation has nothing to do with this wonderful feeling of peace that comes from making your mind blank out everything else. In fact from what I've learned the entire idea is to fully experience whatever is happening, but this has a very important side note: I hate to say 'must,' but the whole idea is to perceive without judgment. As I have discovered, Learning to be free of judgment, is the only way you can truly see what is actually happening. And, if I may make a prediction, what you will discover is the thoughts you have surrounding the pain are much much more painful than what you experience without adding layers of judgment on top of the physical. Everyone needs to learn this at least, if we are ever to be free of our own situation. Because unless you are God or Buddha, you are not really aware of the real situation. We are dreaming even while awake. With the level of honesty you expressed, I'm sure you understand much of this, My question is how do we do it, it does take dedication. If I had that it seems like I could do pretty much anything...
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RE: living with pain

Posted by Jerod on Aug 31, 2011 7:52 pm

I feel like I need to tell you however I don't feel pain on a daily basis. I associate my leg spasms from a few years ago to stress. I don't know for sure, but it sure seems relaxation affects it in my eyes. I notice my legs will tighten immediately when I experience a certain level of extreme stress such as an argument. This doesn't obviously relate to pain, but I believe it's all  a spectrum. And I do have certain kinds of pain, just not anything like you all are describing.

Also I was on several medications for several conditions, I found nothing nearly as useful, over the long term, as simple honesty with myself. I have to add this is not morality. It's not you or anyone's right to judge, when you apply this non-judgment to yourself, it opens doors previously unimaginable.
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RE: living with pain

Posted by Dan Gottlieb on Sep 6, 2011 4:55 pm

So how does one begin? I said it takes dedication, so how do we do that? It starts with a decision. So let me go to the big picture first.

First make a decision about whether you want to change the way you experience your life. Either decision is fine. Because even if you decide you do not want to change the way you experience your life, you have made a conscious decision. And that decision alone is empowering.

Psychologists call the locus of control. If we feel what controls our lives, our happiness and well-being depends exclusively on what happens to us, we are much likely to become depressed or withdrawn. If we believe we have a good deal of influence on our lives, we are more likely to experience well-being.

Now if you make a decision that you want to change the way you experience your life, what now?  In order for you to do that, you also have to make a decision that external factors will ultimately not weigh as heavily as they did.
Of course the only way to change your life is to actually change your life! Changing your life doesn't mean sitting around thinking that you should or ought to. And it doesn't mean making a commitment to do it "one day". On the other hand, it doesn't mean the other extreme either-going to medical school, getting divorced, getting married, moving to the Caribbean or learning to become an astronaut!

Making a commitment means to do something differently tomorrow. If the idea of 10 min. three times a day is too frightening, do it once. And remember, the goal is not to quiet your mind. If that was the goal you would be able to get their for very brief moments at a time after you have been doing this for a while! The goal is to simply notice your life. So as you are attending to your breath with as much precision as you can-noticing where you feel the in breath, for example, your mind will no doubt take over and you will start thinking. But when you gently bring your attention back to your breath if you become aware of what you are experiencing rather than being lost in thinking. And when that happens, you actually begin to create new neural pathways in the brain. And these new pathways or what helps you break old habits of reacting to things in the same way.

First a decision. Then 10 min. a day!
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RE: living with pain

Posted by JLo on Sep 13, 2011 3:14 pm

GREAT post Dr. Dan. I think it hard for us all to remember to take it all in stride, one day at a time. Changing and viewing life a new way is commedable, patience and focus are so important in doing so.
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RE: living with pain

Posted by Dan Gottlieb on Sep 13, 2011 4:39 pm

thanks Janelle,
wonder if anyone out there has given this a try yet?
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RE: living with pain

Posted by zuzu on Sep 16, 2011 1:31 am

It's a moment by moment thing, Dr. Dan.  We're working on it. This has helped me through since 2005 - http://www.youtube.com/watch?v=tv1-wnyhmhQ&feature=related (and for those who need to be told, it's the WORDS and music that are important).
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RE: living with pain

Posted by Dan Gottlieb on Sep 27, 2011 3:10 pm

this is a story of severe pain. A pain we have all experienced (and many still do).
A dear friend of mine told me that his closest friend had just become a quadriplegic. He was roughly my age and his injury was C-5 C6 exactly where mine is.
Visiting him brought back the anguish I endured in those first weeks, months-even years. He talked of a despair that was different from depression. And he also talked of not being able to tolerate being inside his skin.
How dare I tell him that his brain and body will most likely accommodate these changes?
It would be arrogant of me to tell him the research shows that for most of us, our moods return to baseline fairly quickly. It would be patronizing to tell him that he can experience joy and fulfillment whether he is in a wheelchair or not.
So I sit and touch his arm where I know he has feeling. I do that because no one ever touched my body in those early weeks without talking or probing. I sit with him and understand his suffering and remember mine.
And after all the years of hearing people say stupid things to make me feel better, I spend much of my time touching his arm and keeping my mouth shut and looking in his eyes and knowing. Deeply knowing.
And when we are done, he asks if we can talk again. Just being with someone who knows means everything. I never had that when I was newly injured but this is a gift we can all give to others – the ability to be with someone and simply "know" . and maybe even know when to keep our mouths shut!
we can help diminish this kind of severe pain
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RE: living with pain

Posted by Ronald on Oct 4, 2011 4:01 pm

I am a Vietnam era military service connected C5,6 incomplete. I turned 61 a few months ago and have been experiencing severe ungodly left upper and lower extremety pain that pharmaceuticals just don't touch, not even maxing out on oxycodone, which is apparently the best the VA can do for me short of epidurals and trigger point injections. Problem is I have some strange bleeding disorder, two different platelet abnormalities that negate my very normal factor VIII, causing prolonged bleeding times. Until somone can figure out this bleeding time problem and come up with a remedy I am looking at 24/7 level 8 - 9 sciatica and left radiculopathy pain. I can't sleep for the pain, which is compounding my nightmare! My primary care doc has requested a change from the max level of Neurontin to Lyrica, and says this should better control my pain until someone figures a resolution to the bleeding issue.

I have long sympathized with anyone suffering severe chronic SCI pain, but now I am living the absolute worst pain nightmare I could have ever imagined. I thought my pain was bad when initially injured in 1971, but this is bordering on unbearable! It is most unbearable when I'm lying prone, in any position - sides, front, or back, so I find I'm up sitting in the chair most of the time and doing anything to keep busy, which seems to be most helpful in my case.

I have also noticed that now that fall is here the colder temperatures add to my torment. I wonder if anyone else has experienced anything like this and how they cope.
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RE: living with pain

Posted by Eileen on Oct 4, 2011 10:20 pm

How wonderfully written this is, and how very moving too.  I think many of us remember being almost like an island, rarely touched by those who still inhabited the mainland.
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RE: living with pain

Posted by zuzu on Oct 5, 2011 6:57 pm

Most visitors to hospitals, even family, are not good about touching the one who is confined to the bed.  Most people aren't good "touchers" in any situation anyway.  Knowing the one you are visiting has SCI does this funky dunderhead thing to your brain that makes you approach the person as if they were delicate crystal, and a touch could break whatever small crack that's kept them still here.

I'm a toucher, and I've become a bolder one as I've gotten older, but Mom had to remind me one afternoon to touch her cheek, where she COULD FEEL most normally.  I knew her arms, legs, shoulders geve her strange crawly feelings, so I've begun to avoid touching her there.  Touching or stroking her cheek takes planning, going in between her sippy cup straw, the turns of her head, the timing of her conversation, the interruption of her sightline, but I'll work on it and be more direct.  

Tell us where to touch, what type of touch feels best.  You all have to educate us here on the mainland, because we want to make your stay on the island bearable, nay, enjoyable, and we're willing to change our bumbling ways!
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RE: living with pain

Posted by Dan Gottlieb on Oct 11, 2011 12:34 pm

I would love to have people ask me where I would like to be touched. And I imagine most of us would love to hear that request also. Now that I think about it, most humans would also like to hear that same question! Thanks so much zuzu
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RE: living with pain

Posted by Dan Gottlieb on Oct 11, 2011 12:40 pm

hi Ronald,

the problem with the terrible pain your experience is that most pain demands attention. Pain is one thing, suffering is another. So when all of your focus is on your pain, you suffer. I think pain management is about doing two things simultaneously: on the one hand we all must do everything we can to diminish the pain. At the same time, when pain happens, we must learn to simply let it happen without fighting it.

I know, easier said that done. So you can begin by approaching your pain like a scientist. When it happens, pay attention to your body and explore where the pain is located, if it has a temperature or a texture in your mind. Try to notice its center point and how far it spreads around the periphery. Pay very close attention and you will notice how the pain shifts and may increase or diminish, its center point might change. And if you can be aware of how much your body is suffering and perhaps feel some compassion for your poor body, you might notice a shift in your experience of pain – even if the pain doesn't change.

I hope this helps
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