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living with pain

Re: living with pain

Posted by USKnightHawk on Jun 3, 2014 7:57 pm

I became a paraplegic in 1986. I remember a Dr telling me to stay away from pain meds (long-term) when I inquired. He said the patients he sees, that take them, have become empty shells in many ways. I took it serious and avoided it until 2004 when I had a serious surgery. I was placed on strong meds and remained on them through every day for 6 years. It took more and more to mask the pain until I decided to quit. It was no picnic when I did but worth it. The body will take time to recover from those meds. Everything from bowels to pain tolerance had to be relearned. It's been a long road but I stgrongly believe pain meds are great for short-term relief only. We need to live with what we have and that includes pain. Channel it into weights, marathons, family, anything but pills.

Re: living with pain

Posted by Dan Gottlieb on Jun 4, 2014 3:22 pm

hi Rick,

As you may know, there's lots of research out about the efficacy of things like meditation, yoga  and acupuncture for pain. Like you, I have found that changing my relationship with the pain has changed  my experience of pain.. As soon as I realized that it wasn't  Dan who was suffering,  it was my body  that was suffering.. When that happened, I felt compassion  for this body that has endured so much  and worked so hard to give me the quality of life that I have.
So when I feel pain, I feel kindness.. Earlier when I felt pain I felt fear  or anger or like a victim. Big difference.

But I don't want to throw the baby out with the bathwater. I agree that pain medications are a godsend  for acute pain. But used wisely, they are also helpful for chronic pain..

Thanks for your wisdom Rick


Re: living with pain

Posted by Dan Gottlieb on Jul 16, 2014 12:27 pm

I had  a series of Skype sessions with someone in the Pacific Northwest who had quite severe  pain.. As we all know, the pain is  exhausting and runs the risk  of taking over  our lives. We had been meeting for a while and have developed  a caring relationship.

she was talking about her pain  and where it was in her body and how it affected her life and I could see that she was  no longer in our conversation  that she was lost  in her internal monologue.of course her pain was very real, but at the moment she was lost in her thinking.

I interrupted her after several minutes and asked her  what it was like  to be  Skype with me that for a moment.. She reoriented herself, took a deep breath and said she enjoyed our sessions together and that it was always good when we connected.. I asked her to go further  and she talked about being with someone  who felt like  a kindred spirit, who really cared about her and had some tools to help her. As she was describing this, the look on her face changed  and her shoulders dropped and her breathing was much  deeper and slower..

When I pointed this out, she agreed and said that she has lots of distractions that are helpful.. It's funny how she described this as a distraction implying that the pain was the truth of her life and everything else was a distraction.. That's what we all do with our pain,  whether it is physical  or emotional pain.  We believe anything that takes us away from our pain  is just a distraction.. The truth of her life, and the only thing we know to be true,, is that for most of that time we were together she felt  good--at peace.. And all of that while she was in pain.

Pain is pain. But how we experience that pain is  in part about the storyline. If the focus of our attention  is just on the pain, that's all we will see. But at any given moment there are thousands of things happening..  Depending on what we are attending to is how we will describe  our lives..

So, how is your life this moment?

Re: living with pain

Posted by BklynMaria on Jul 23, 2014 2:01 pm

Hi. I learned to live with daily  pain since January 2003.  If I take prescription meds. Too many side affects you
including constipation.I  have to use enema since I cannot go to bathroom on my own,  I take Tylenol or Motrin occasionally  which helps sometimes.  I have pain from top of my back down to my feet. I had spinal cancer and radiation made me a paraplegic T9. 

Re: living with pain

Posted by Dan Gottlieb on Jul 23, 2014 3:41 pm

Welcome to this discussion, I think you will find a group of caring people who really understand.

You've told us that you have pain had some of the things you do about it. But certainly you are much more than pain. I'd like to know about your life, people in your life, love you me have or wish for, how is your relationship with your significant people? And more important, how do you feel about yourself?

Pain is pain and all of it is terrible. But how we experience pain is the difference between quality of life were not. And how those questions get answered can give us some insights into how you experience that pain.

I've talked about the difference between pain and suffering. You are experiencing both. Let's see if we can separate those 2 things out.

I would love to help if I can. Your turn…

Re: living with pain

Posted by Cari on Jul 30, 2014 3:34 pm

My youngest son (now 22) has been a quadriplegic for almost 2 yrs now, hes always in pain in his neck, and his shoulder blades. Thankfully his primary care dr gives him pain meds for it, because Ive taken him to 3 pain drs and they wont help him. One dr actually called him an addict, I was never so mad in all of my life, he didnt even examine my son, I think he "assumed" because hes young that he uses it to party.. First of all he cant get the pills himself as he cant use his hands. Im wondering, does the pain ever go away? In general I mean, I realize the spinal cord takes a very long time to heal (hes a c/5-c/6 incomplete) he just had surgery last Dec to stablize his neck below where it was fused from his accident, we hoped that would resolve some of the pain, but it has not.

Re: living with pain

Posted by Dan Gottlieb on Aug 13, 2014 3:24 pm

hi Carl,

This must be so very difficult  for you.. Not only do you have his son with the disability, but he suffers with pain on top of it. I don't think there is a greater pain than watching a loved one suffer. So in a way, you are both in pain. I could address the physicality of the pain..  For example what  type of pain determines  the prognosis and the treatment. I think everyone would agree that although  drugs are sometimes necessary to help us get through, they are not  the first choice as there are  lots of other interventions  including dorsal column  stimulation like tens units etc. Mindfulness meditation and acupuncture can also be helpful in dealing with pain.. and there are  lots of medication  that are not mood altering or opioid-based..but there are people who know far more  about this than I do.

But please do not ignore your pain.. Too often caregivers and loved ones ignore their own emotions and find themselves feeling even worse  over time. You and your son both need understanding,,  compassion and  kindness.. Both of you!

Please take care

Re: living with pain

Posted by Dan Gottlieb on Nov 26, 2014 4:14 pm

New research has emerged indicating that itching and pain are located in the same area of the brain.
 Well, it turns out emotional pain and even social pain (when we feel lonely, disenfranchised or alienated) also find their home in that same area of the brain.
As a matter fact, I read an article several years ago that indicated that sustained loneliness can be as harmful to the body as smoking!
But we probably know that already. Almost all of us have experienced trauma, whether we are disabled or our loved one is. And you have probably experienced feeling alone and different from everyone else.
We know pain whether it is neuropathic, emotional or social. We know pain. I am working with a man now who has progressive MS. He is depressed, anxious and angry to a point where he is wondering if he wants to live any more.
Of course there are medications for neuropathic pain, for anxiety and for depression thank goodness. But none of these medications cure's anything. At best, they diminish the suffering. Of course antidepressants, if we get the right one and have the right reaction, can be an enormous help. But even so, to deal with any kind of pain, often more is needed than pharmaceuticals.
And before my patient can make a decision about whether or not he wants to live, his pain must be managed better. We all know that pain can cloud our judgment and cause us to make desperate and very poor decisions.

I hope you agree with my assumption that we are all good people. We may have done some stupid things over the course of our lifetimes, we may have hurt people we love one occasion, but who we are at the core is basically good. Trying to do the right thing.

I was retraumatized on the turnpike a couple of weeks ago. My original accident 35 years ago took place on a turnpike when a tractor-trailer lost its wheel which crushed my car and broke my neck. On this particular day I was a passenger in my van when I heard an explosion to my right. And about 3 lanes over, I saw a tractor-trailer with smoke coming from one of its tires. I was safe, but my whole body/mind reacted as though it was the original accident coming again. My body began to shake, but I began to cry and cry hard. I was crying for this kind man who suffered so over the course of his lifetime. I cried out of kindness and grief. I cried out of compassion and even love for this good person.

Sorry, no fairytale ending here about me being okay after I finished crying. I was shaken for the next 24 hours. But I spent the bulk of those 24 hours feeling kindness and compassion. And those 2 emotions, live in very different parts of the brain than pain does. And it is the experience of kindness and compassion that helps regulate the brain from flight or flight to a sense of openheartedness.

No cure, but I would rather spend more time feeling kindness than telling myself stories about what all of this means and what the future might hold.

My mother always told me "be nice Danny". But the real message that can change someone's life is "be nice to Danny".

Be nice to that person you see in the mirror. Who knows, that could also change the trajectory of your life.

Re: living with pain

Posted by Dan Gottlieb on Apr 15, 2015 3:45 pm

My pain is much worse these days. Sometimes it's so bad in my right arm that I cannot drive my wheelchair (my joystick is on the right side).

My daughters, my nurses and especially my girlfriend all want to know why is this happening now. It's understandable that question comes up. After all what we really want is to find the cause, then find the cure so we can find the ultimate goal of diminishing my suffering. No question that I'm on board with that!

But to be honest, I no longer wonder "why". After all of these years of quadriplegia, my only question is: "how can I live with this truth of my life?". I have asked why too many times. Why are my spasms so bad, why is this pain, why these autonomic problems, why why why. Every time we ask that unanswerable question, it adds stress to our lives. (Disclaimer here: if we are having new problems or acute ones, that question is critical as we must intervene so we can do something about it).

Instead of why, how about if we ask a different question: "what now?". How do I live this life without negotiation and without railing at the gods for our suffering and without blaming spouses, doctors or ourselves. (Although I tried to blame my daughters for my neuropathic pain, but they wouldn't let me get away with it!).

How do I live the life I have? It's not the life I would like ideally and it is not even the life I had yesterday. Frankly, that part doesn't matter. Will I clench against my life the same way most of us clench around our pain? Or will I open my heart, my eyes and my arms to this precious life, flawed as it is. And will I do the same for myself, flawed as I am?

There is much we can do about neuropathic pain, including some medications that offer marginal help, acupuncture, massage, meditation and yoga. And none of us should give up.

But remember, wars don't end when there is a victory. Wars end when we stop fighting.

And perhaps, when we stop fighting we might ask different questions like:

what have I ever done to deserve this beauty around me, this love I have in my life, this ability to breathe in precious oxygen and exhale that carbon dioxide to nurture the nature that surrounds us?
What have I ever done to deserve what I have, including the ability to read and write these words.

May we enjoy this spring season day by day
Attached Files

Re: living with pain

Posted by Dan Gottlieb on Aug 26, 2015 11:44 am

my pain has been getting worse. Sometimes the pain in my arms is so intense that I cannot move them. Now that's problematic for a quadriplegic!

But that's not what I want to talk about today. I don't want to talk about my pain. That gets boring after a while. I want to talk about what my pain does to people who have to bear witness.
A psychiatrist from the 50s once said that the most difficult part of the love was tolerating your own helplessness in the face of the loved ones suffering..
When we are in screaming pain, it's hard to think about others even look in their eyes and watch their facial expressions. But my God, they suffer. My companion/girlfriend had to endure this the other night when I was near tears. The next day I was doing my life and poor Joan was still quite shaken.

if you are a caregiver, please honor your own suffering. You and Joan and all of the caregivers out there need respite when your loved one is in pain. Maybe there's nothing you can do at the moment, but I would love you to find some compassion and tender loving care for yourselves. This is a very hard pieces business so please try to find some space for yourself where you can feel safe and free of responsibility.

Re: living with pain

Posted by Dan Gottlieb on Dec 30, 2015 10:44 am

There is plenty of evidence that many if not most people with chronic pain also experienced depression. Of course, that could be published in the Journal of "obvious findings" because chronic pain is depressing.

But here is the problem. Depression actually makes pain worse and pain makes depression worse. So here we are in a vicious and downward cycle. So what can be done? Well in this Western world of big Pharma, the first line of defense is usually drugs. And some antidepressants also work on pain. And there are some pain medications that are pretty effective without sedation. That latter part is important because sedation can actually make depression worse!

So what else can be done?

Our bodies and brains are hardwired to deal with acute pain. So when we feel pain everything gets mobilized and we do whatever is necessary to cure the pain or cure whatever is causing the pain. The problem is that with chronic pain, the body still tends to respond as though it's an emergency. Unfortunately, it's not. It's something we have to learn to live with.

First and foremost we have to learn stress management techniques. Deep breathing exercises, yoga, meditation or other forms of deep contemplation. All of this helps our brain learned that pain is what's happening at this moment, but it's not all that is happening at this moment. The brain learns that while we may be experiencing pain, we are also breathing or listening to ambient sounds in the room or feeling other sensations in our bodies. Eventually the brain learns that chronic pain is part of our lives but not how we define our lives.

It also helps to engage in activities that release natural endorphins and dopamine's, like exercise or experiencing joy or gratitude every day.

Helping others also helps us deal with chronic pain as the attention of our lives go outward rather than inward.

There are many ways of coping with chronic pain. Please share yours?
Dr. Dan

Re: living with pain

Posted by Dan Gottlieb on Jan 6, 2016 4:47 pm

I has been seeing a young man who had a degenerative neuromuscular disease and lived with chronic pain.
When I saw him, the first time, he said he felt so relieved to be with someone who understood. And to be with someone who lived with significant disabilities and was happy nonetheless. We didn't have much time to talk about pain, we just connected on a very deep level.

But when we met again, he told me about his pain and how all the medications he was on made him physically weak and terribly forgetful.

Knowing he felt safe and cared for in that room, I invited him to simply rest in his wheelchair while I held his hand and felt great compassion. Even love.

He went on to tell me parts of his life that he felt ashamed about. And still my position had changed-compassion.

When we were done, I asked how his pain was by the end of the session. He said it was negligible. But as soon as I asked him to focus on his pain, it all came back.

The lesson, compassion minimizes paid as does love. And it doesn't matter whether we are offering compassion or receiving it, compassion is healing. We know that compassion and love are emotions that cause healing hormones to course through our brains. Hormones like oxytocin and dopamine.

And pain produces cortisol as our instinct is to brace up against it. Letting go, finding safety, feeling compassion for that body that suffers, all are helpful. No magic cures, but our life experience, our ability to love and be loved is much bigger than the experience of pain.

It's worth a try!

Re: living with pain

Posted by Dan Gottlieb on Feb 24, 2016 3:33 pm

lately my pain has been getting worse. Much worse. Unfortunately, when it is bad my instinct is to brace against it. So I tightened my muscles or I don't move my arms which is where the pain is. And of course that makes it worse. So I have been taking Neurontin lately at a much higher dose than previously. I don't think it works at all, but I take it anyway because if all I have is placebo then that's what I'll take!

So I'll go back to my doctor to explore other drugs. I'm not optimistic about that route. And I'll go back and try acupuncture and acupressure. Others have recommended medical marijuana which I probably won't try. I'm afraid if I do, it will bring back memories of the 60s when I took nonmedical marijuana!

And when I can take a breath or two, I can look carefully at the pain and watch how the sensations change moment by moment from burning to feeling like sandpaper etc. And then I can feel great sadness and compassion for this body that has been beaten up and in return it does everything it can to keep me up and functioning. When I can take a breath and focus on what my body is going rather than just the pain, somehow it diminishes.

Kindness and compassion is helpful for pain. Difficult to get there, but worth the work. Kindness and compassion for these bodies of ours.

Re: living with pain

Posted by Dan Gottlieb on Apr 13, 2016 3:57 pm

There are all kinds of pain. We all know about the physical pain. But what about the pain of a broken heart or grief? And then what about the pain of feeling isolated in the world?

All kinds of pain, but they all light up in a similar area of the brain. As far as the brain is concerned, pain is pain and the nuances don't matter.

So what does this mean for us? Well we know that emotional and social pain diminish when we experience understanding and compassion.

But physical pain? It turns out that they also diminish physical pain. Because not only do our bodies hurt, but we are experiencing something that we cannot describe to other people. So that makes us feel isolated. We need understanding and compassion in order to make our pain just about pain and not about the stories we tell ourselves in our heads.

So where does this understanding and compassion come from? Well if we are very lucky- unusually lucky, it comes from other people. But to be more predictable, it must come from within.

Only you can experience your pain. So when you do, be mindful of this poor body and this good person who suffers at this moment. Just imagine holding yourself in the same way you would hold a child who was suffering. With tenderness and compassion. Try to picture doing that for yourself. The pain doesn't change-it still hurts like hell. But if you can experience kindness towards yourself when all of this is going on, it significantly alters the experience of pain.

Try it. After all, there are no negative side effects!

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