CRPS origins

[Rabbit22]

A few days into the Pain Recovery Program and I feel it time to write an abridged record of my interpretation of where it all came from. (A few small doubts linger as to structural or neural pathway pain.)

My INITIAL INJURY was knee replacement surgery, my CRPS gradual in appearance. I have a HISTORY OF ANXIETY, especially health anxiety, ranging all the way back to childhood. At the time of my surgery my wife was battling cancer....PAIN ARISING AT A STRESSFUL TIME. I have had IBS for decades and now CRPS.....thus MULTIPLE SYMPTOMS of TMS type conditions. My pain is variable, left leg, right knee, left ankle, right toes, etc.

Multiple specialists have ruled out any orthopedic or similar structural problems.

My own interpretation is that my Brain and CNS received a shock during surgery...nothing out of the ordinary, but "only" the uneventful surgery itself (although I did wake during surgery). This set in motion my long journey into Fear, Anxiety, and Pain.

A few stubborn doubts remain, I'm trying to stomp on them....
This is an extremely abridged version, as I mention above, but I think enough to get the gist.
I am interested in your thoughts.....thank you in advance

Rabbit22

 

[JanAtheCPA]

You've probably had TMS off and on your entire life. Even for those of us with relatively normal childhoods and relatively normal adult lives, it's not at all unusual for a TMS crisis to be triggered by some traumatic event in our older years, such as your surgery on top of your wife's cancer.

However, for many of us, myself included, the only trigger is encroaching age itself.

My lifelong highly manageable anxiety and random TMS symptoms came together in a cascade of multiple symptoms that threatened to make me housebound the year I turned 60, in 2011. Fear of disability and isolation, lack of meaning, and of course the big one: Mortality. Thanks to Dr Sarno, Claire Weekes and this forum, I was able to turn it around and get my life back, better than ever. I developed skills I'll be using the rest of my life to manage TMS symptoms, which I see now as a signal that I'm repressing some new source of emotional distress or conflict. As soon as I realize what it is and assure my primitive TMS brain that it is not life-threatening, the symptoms are no longer needed - which is exactly how the stress-pain response was designed to work when it evolved eons ago.

 

[Rabbit22]

Thank you JanAtheCPA,
For me, the WHY questions (why this symptom now, why is my body behaving this way, etc.) Is less important than the WHAT questions (what are you going to do, what can I do to improve or limit this pain).

A symptom may be the result of ongoing injury to the body, to the brain generating pain in order to draw attention to danger (which may or may not, in reality, exist), to microscopic injury to the brain and/or CNS, to an initial shock to the CNS that triggered a cascade of symptoms, to behavioral factors that inadvertently perpetuate pain. Or, likely as not, some combination of the above.

This may be an unpopular idea for this forum...rejection of ongoing injury almost being a prerequisite for success. But I am willing to concede that perhaps structural changes are involved in my own stubborn symptoms...maybe not as a primary cause, my money is on an initial shock followed by behavioral reinforcement of symptoms ( isolation, limiting activity) and above all anxiety and FEAR that I will always have this pain and this level of disability.

I'm interested in other CRPS persons, as well as others with TMS type symptoms, take on this. Thank you in advance for your time and attention as I sort through the beginning part of Alan's program.

 

[berlinale]

Hey Rabbit. I think it is a misinterpretation that rejection of ongoing injury is considered as a prerequisite for success here. The prerequisite is that you rule out any ongoing, structural injury and, once you have done it, fully accept the TMS diagnosis. I think this is a major difference.

 

[berlinale]

You've probably had TMS off and on your entire life. Even for those of us with relatively normal childhoods and relatively normal adult lives, it's not at all unusual for a TMS crisis to be triggered by some traumatic event in our older years, such as your surgery on top of your wife's cancer.

However, for many of us, myself included, the only trigger is encroaching age itself.

My lifelong highly manageable anxiety and random TMS symptoms came together in a cascade of multiple symptoms that threatened to make me housebound the year I turned 60, in 2011. Fear of disability and isolation, lack of meaning, and of course the big one: Mortality. Thanks to Dr Sarno, Claire Weekes and this forum, I was able to turn it around and get my life back, better than ever. I developed skills I'll be using the rest of my life to manage TMS symptoms, which I see now as a signal that I'm repressing some new source of emotional distress or conflict. As soon as I realize what it is and assure my primitive TMS brain that it is not life-threatening, the symptoms are no longer needed - which is exactly how the stress-pain response was designed to work when it evolved eons ago.

Hi Jan. I have a question concerning the mortality topic as I am convinced fear of mortality is also a factor for me. What did you actually do about it in order to get better? Was it enough to become aware of that fear or did you actual had to eliminate that fear? Are you now not afraid of mortality anymore and what did you do to achieve that mindset?

 

[JanAtheCPA]

Hi Jan. I have a question concerning the mortality topic as I am convinced fear of mortality is also a factor for me. What did you actually do about it in order to get better? Was it enough to become aware of that fear or did you actual had to eliminate that fear? Are you now not afraid of mortality anymore and what did you do to achieve that mindset?

Great question, @berlinale, which goes right to the heart of the repression theory.

No, I have not lost my fear of death. It's still there, but it is out in the open, as it were. I am conscious of it, I acknowledge it instead of shoving it down and finding distractions to avoid facing it. I accept the painful truth about reality. I also accept that it is part of what has formed my personality and behaviors. I forgive myself for being afraid of my own death.

Over time, my stress response to random triggers about mortality start changing, shifting more quickly into awareness and mindfulness of "whoa, reading/hearing that just triggered my mortality fear, I better take a moment to process that". Thus, the TMS symptoms ultimately don't get a chance to come into play, because they're not needed.

There are four core issues you can do this with:
Mortality
Freedom
Meaning
Isolation/Abandonment

Mortality and Abandonment go hand in hand when facing the loss of a loved one, by the way.

 

[JanAtheCPA]

Thus, the TMS symptoms ultimately don't get a chance to come into play, because they're not needed

Mind you, the triggers are pretty constant these days. Freedom and Meaning are the issues at play when we're surrounded by dysfunction and disorder.

Actually, I feel like there should be a fifth issue added to that list (which is from the practice of Existential Psychotherapy. The fifth issue would be Uncertainty. We're surrounded by it, and I think it's a massively significant trigger.

 

[berlinale]

Great question, @berlinale, which goes right to the heart of the repression theory.

No, I have not lost my fear of death. It's still there, but it is out in the open, as it were. I am conscious of it, I acknowledge it instead of shoving it down and finding distractions to avoid facing it. I accept the painful truth about reality. I also accept that it is part of what has formed my personality and behaviors. I forgive myself for being afraid of my own death.

Over time, my stress response to random triggers about mortality start changing, shifting more quickly into awareness and mindfulness of "whoa, reading/hearing that just triggered my mortality fear, I better take a moment to process that". Thus, the TMS symptoms ultimately don't get a chance to come into play, because they're not needed.

There are four core issues you can do this with:
Mortality
Freedom
Meaning
Isolation/Abandonment

Mortality and Abandonment go hand in hand when facing the loss of a loved one, by the way.

Thanks a lot, this is really helpful. I think I will try to journal about mortality fear tomorrow.

 

[Ollin]

This may be an unpopular idea for this forum...rejection of ongoing injury almost being a prerequisite for success. But I am willing to concede that perhaps structural changes are involved in my own stubborn symptoms...maybe not as a primary cause, my money is on an initial shock followed by behavioral reinforcement of symptoms ( isolation, limiting activity) and above all anxiety and FEAR that I will always have this pain and this level of disability.

For me this initial sensitizing event (as it turned out a perceived injury, but only after many months of investigations by which time the pain developed its own life) was traumatic enough to keep me stuck in doubt, catastrophizing, fear of movement, not to mention feeling like a failure and bleak vision of my future. But I managed to shift these beliefs with honest inquiry into correlation of symptoms with "diagnoses", correlation of onset and worsening with life events, and most importantly - moving toward self-empowerment. Some therapy and self-help. Acknowledging and validating my feelings (which were dismissed since my childhood), learning about my own needs, attachment style etc. helped me understand the whole complex picture of why I am vulnerable to TMS and how I used to distract myself from the thoughts of being weird, broken, unlovable.

I think EFT was my go-to self-help technique, as it uncovers unexpressed emotions in a self-compassionate way, but also there is much work on healing chronic pain (if interested check Nick Ortner's "Tapping Solution for Pain Relief or Julie Schiffmann's youtube channel, some of these deal directly with processing the response to traumatic journey in the early stages of chronic pain and clearing all the nocebo effects we experienced). Other than that - safety in the conviction that it is "only" TMS let me enjoy physical activities and with that the fear of disability went away too.