pain support groups - Back in Control https://backincontrol.com/tag/pain-support-groups/ The DOC (Direct your Own Care) Project Sat, 11 Jun 2022 13:57:11 +0000 en-US hourly 1 “My Way Out” (of “The Abyss”) – One Patient’s Story https://backincontrol.com/my-way-out/ Sat, 11 Jun 2022 11:34:52 +0000 https://backincontrol.com/?p=21533

This is one of many stories of hope that I hear frequently. Her story is a classic illustration of how the body can heal itself if we can get out of the way. There are several principles to consider regarding the healing journey. One is that she took control. The … Read More

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This is one of many stories of hope that I hear frequently. Her story is a classic illustration of how the body can heal itself if we can get out of the way. There are several principles to consider regarding the healing journey. One is that she took control. The DOC Journey course, app, and my book, Back in Control: A Surgeon’s Roadmap Out of Chronic Pain are simply frameworks that allow you to organize your thinking about how to apply science-based concepts to your situation. It is not a “self-help” process. It is about connecting to you (all of you), which includes your capacity to heal. She initially struggled, which is common. Taking responsibility for every aspect of our life is not what most of us were taught.

I am somewhat beside myself regarding several aspects of her story.

  • Mainstream medicine is overlooking the basic physiology that we all learned in high school. When you feel threatened, your body goes into flight or fight and you experience physical symptoms. When this state is sustained, your body will break down, and you’ll develop serious illnesses. (1)
  • The medical profession took away her hope. It has been documented in the neuroimmunology literature that hope/optimism directly lowers inflammatory markers. Taking it away does the opposite.(2)
  • You may consider her story unusual or a “miracle.’ What is a miracle is life and the body’s capacity to heal. What if broken bones couldn’t mend as strong as they were before? What about cuts and deep wounds? What if your body couldn’t fight off infection? What kills patients in cancer treatment is often infection because strong drugs that kill cancer cells often compromise the immune system.
  • Every day, I take a moment to consider how my heart can beat 60-80 times a minute with the only rest being between beats. It doesn’t make any rational sense.
  • But what I find especially upsetting is the story of her early family life, of which variations occur on over 35% of American families.(3) How can this continue to be? We know better and it all keeps happening. The effects of an abusive childhood have been documented to last the rest of your life.

Here is her story of hope and what keeps me moving forward.

I am an unwanted child who was abused by her family. I do not remember ever being healthy. At 13, I started getting migraines.

5 years ago, at age 52, I broke my ankle and had horrible pain after surgery. Even though the most prominent pain doctor in our country diagnosed me with CRPS (chronic regional pain syndrome), physical therapists and the physiatrist didn’t believe it. I tried my luck at another great centre for PT, but it was the same. After each session I could not live for days because the pain was so bad even though I was on opiates.

I reluctantly decided I would re-learn to walk by myself. I had to go excruciatingly slowly, but in a few months I was able to walk with almost no pain. I got off opiates without a problem. Getting in touch with anger that I repressed all my life was extremely beneficial. Even though both my surgeon and the pain doctor were mad at me for giving up on PT, they each wrote that the PT was “a bit too harsh” after they saw me walk again.

Everything was going quite well until I got herpes zoster. When I recovered I was very keen to go walking. I pushed myself to walk for the next few years, but each step I took was painful. In the midst of it, I convinced the surgeon to remove the hardware, which did not help. In the last few months I finally gave up on walking longer distances even though I love to walk.

 

 

 

I have been writing JournalSpeak/expressive writing for 2+ years. It has been a great way to get the anger and other repressed feelings out. In the first 4 months, I got rid of my lifelong insomnia, and my chronic depression was way less. I was able to slowly lower the dose of antidepressants. I am able get rid of my migraines with writing the anger out, and I also need to validate my feelings. While writing down my feelingsI discovered I was scapegoated and gaslit by my family. I see others and myself in a completely new way, and do not feel so helpless anymore.

I was incredibly lucky to discover Dr. Hanscom on the Trauma Superconference. No matter how much anger I got out in writing, I could not get any relief from ankle/hip/back pain. I was eager to try his advice: no listening to the news, no criticising, no talking about pain, and using another virtual desktop on my computer without pain being discussed. He also gave me “permission” to focus on happier things like planning for things I would love to do and am able to do instead of trying to make sense of the past.

I realize that I have pushed myself too hard all my life. I can walk the same distance, but if I push myself, every single step is painful. If I say to myself, “I am going out and will walk as much as I can,” I can walk the same 1.5 km with little to no pain at all. If the pain returns, my nervous system is calm enough now that I can believe myself when I say, “I am safe. My ankles/hip/back are OK” – and the pain goes away!

The fact that the pain doctor said in an interview only a couple of years ago that nothing much can be done for chronic pain, incredibly saddens me. Two of Dr. Sarno’s books(4) were translated to our language years ago. A psychologist that works with people with chronic pain has a 3+ years waiting  list for her groups. She recently said in a lecture for rheumatoid patients that they need to talk about their pain. Even though one patient insisted that people ignore or do not believe her, the psychologist insisted they continue to talk about pain. I know firsthand this does not work. A couple of years ago I joined an online support group for chronic pain, and just reading about pain made my pain so much worse that I had to leave.

I am so incredibly grateful to Dr. Hanscom for saving my life. All the advice and information he shares, allows us to help ourselves even if we live on another continent.

This is not about me

I would like to emphasize that the healing journey is based on deeply-documented interventions. The DOC (Direct Your Own Care) Journey is simply a framework that presents them in organized and accessible manner. There are a growing number of practitioners that understand the human need to feel heard, validated, and safe. Each of them has their own style of educating their patients, implementing effective treatments, and helping patients access their own capacity to heal. Some of the main principles are that chronic disease is complicated, multiple aspects of it must be simultaneously addressed, and the patient must take responsibility for his or her own care.

One interesting aspect to her story is that belonging to a pain support group carries a poor prognosis in that most them are focused on discussing the pain, medical care, and how badly they have been treated.(5) Although they may be correct, these discussions place your brain on the problems and not moving into the two-part solution – letting go and moving forward.

Some other effective interventions include:

  • PRT – Pain Reprocessing Therapy(6)
  • EAET – Emotional Awareness and Expression Training(7)
  • ISTDP – Intermediate Short-Term Dynamic Psychotherapy(8)
  • ACT – Acceptance and Commitment Therapy(9)
  • Mindfulness-base Stress reduction(10)

She found way out on her OWN 

Again, each of these must be framed in an overall treatment approach. As much (most) of it is self-directed, not a lot of resources are required. When needed, they can be plugged into the bigger picture. I liken it to doing a jigsaw puzzle that is not that difficult. They key is persistence.

 

 

Note, that although the framework provided by Back in Control helped her move forward in a powerful way, she had already done a lot of work. I have never seen or corresponded with her. She truly pulled herself out of the hole and entered into a new life! For many who heal, this is the way it often happens.

References

  1. Holmes TH, Rahe RH. The Social Readjustment Rating Scale.J Psychosom Res (1967); 11:213–8. doi:1016/0022-3999(67)90010-4
  2. Dantzer R, et al. Resilience and Immunity. Brain Behav Immun (2018);74:28-42. Doi.10.1016.j.bbi2018.08.010
  3. Felitti VJ, Anda Rf, Nordenberg D, et al. The relationship of adult health status to childhood abuse and household dysfunction. American Journal of Preventive Medicine (1998); 14:245-258.
  4. Sarno J. The Mind Body Prescription. Warner Books, New York, NY, 1998.
  5. Friedberg F, et al. Do Support groups help people with chronic fatigue syndrome and fibromyalgia? A comparison of active and inactive members. J Rheumatol ((2005); 32:2416-20.
  6. Asher YK, et al. Effect of pain reprocessing therapy vs. placebo and usual care for patients with chronic back pain. JAMA Psychiatry (2021).doi:10.1001/jamapsychiatry.2021.2669
  7. LumleyMA, Cohen JL, Stout RL, Neely LC, Sander LM, Burger AJ. An emotional exposure-based treatment of traumatic stress for people with chronic pain: preliminary results for fibromyalgia syndrome. Psychotherapy (Chic) 2008;45:165–72.
  8. Abbass Allan, et al. Intensive short-term dynamic psychotherapy to reduce rates of emergency department return visits for patients with medically unexplained symptoms: preliminary evidence from a pre-post intervention study. CJEM (2009); 11:529-34.
  9. McCracken LM and Vowles KE. Acceptance and commitment therapy and mindfulness for chronic pain: Model, process, and progress. Am Psychol (2014); 69:178–87.14. Hann KEJ,
  10. Cherkin DC, et al. Effect of mindfulness-based stress reduction vs. cognitive behavioural therapy or usual care on back pain and functional limitations in adults with chronic low back pain. JAMA (2016); 315:1240-1249. doi:10.1001/jama.2016.2323

The post “My Way Out” (of “The Abyss”) – One Patient’s Story first appeared on Back in Control.

The post “My Way Out” (of “The Abyss”) – One Patient’s Story appeared first on Back in Control.

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