Connections between pain and PTSD

The past couple of weeks have been crazy for me, and it’s taken somewhat of a toll. I’ve been busy with work, busy with other activities, busy, busy, and more busy. I also did some traveling for about a week to out-of-state relatives, for a big family get-together. In and of itself, it was a great time. But the change in my schedule, the long hours of driving — over 30 hours, all told, in the car — not being able to get enough sleep, and the change in food choices (how do they eat that stuff?) all threw me off, big-time.

I managed to keep it together and not completely blow-out/melt down during the trip, or immediately afterwards, which often happens when I travel to this particular branch of the family tree. But the past few weeks have been packed full of crazy-busy-ness that I now realize has been a pretty concerted effort to dull the pain of the trip.

I’m not talking about emotional pain… though it’s never easy to spend time as an outsider, when everyone else is connecting and having a wonderful time being together — I’m the oddest bird in the family, and between my difficulties in keeping up with what’s going on around me and my narrow and intense interests that aren’t run-of-the-mill, people often don’t know what to do with me.

What I’m talking about is physical pain.

Yes, physical pain — the kind that burns, that aches, that throbs, that stings. The kind that makes my clothing hurt me, that rakes my legs when my pants rub against them… the kind that makes me jump whenever someone touches me… the kind that sends a shock wave of smacking ache to the marrow of my bones when my spouse puts their hand on my forearm… the kind that keeps me from sleeping, because I can’t stand the feel of sheets on me, but I also can’t stand the feel of air-conditioning blowing across my skin… the kind htat gets worse when I am stressed or tired or upset or all of the above… the kind that I often don’t even know is there until someone makes contact with me, and I jump, and they feel like they’ve done something to hurt me. They have. They didn’t mean to, and they would never do it on purpose. But they hurt me.

It’s not just the emotional pain of family visits that gest me. It’s the physical pain, as well.

Here’s the deal — for as long as I can remember, I have had issues with a whole slew of sensory problems, the most disruptive of which was body-wide pain. I can remember, ever since I was a little kid, feeling like I was being hit, when people would just reach out to touch me in very innocent, social, appropriate ways. I would shrink back from them, and they would often take offense or get angry with me for “rejecting” them. It sorta kinda messes with your head, when the people who love you the most cause you intense pain when they try to show their affection for you. And it tends to muck up your relationship with them, when you can’t accept their (appropriate) affection, but they don’t understand why.

To tell the truth, I didn’t even understand why. It’s hard to explain, unless you’ve been there, but the experience of painful touch is such a visceral, physical thing, it sometimes doesn’t translate into words. It’s just there. You can’t describe it, you can’t even really pinpoint it. Sometimes you have no idea it’s there, until someone makes contact with you. Then, all you know is, it hurts, and you pull away to avoid it, so you can just get on with your life.

And you do things to avoid/mitigate it. You steer clear of expressive people. You avoid demonstrative friends. You always keep more than arms’ length away from other people, just in case they reach out to you. You spend time with people who either don’t like you or couldn’t care less about you, because the chances of them touching you is small to none — and it’s easier to be around those types of people, than the friendly ones who like to make contact.

These things are done on a subconscious, instinctive level, and sometimes they don’t even register with you when you’re doing them. Like pulling away from people when they come close. Like shrinking back from a hug someone is trying to give you. Like jerking away quickly when someone touches you accidentally.

And depending on how sudden or shocking the pain is, it can trigger a whole cascade of other sensations/symptoms/reactions that look a whole lot like PTSD.

Over at Helpguide.org, I found this list of symptoms

Re-experiencing the traumatic event

  • Intrusive, upsetting memories of the event — memories of past painful contact tend to show up suddenly
  • Flashbacks (acting or feeling like the event is happening again) — yes, it does feel like it’s happening all over again
  • Nightmares (either of the event or of other frightening things) — sometimes nightmares do follow an extremely painful episode, tho’ that’s rare
  • Feelings of intense distress when reminded of the trauma — yes, it is intensely distressing to be reminded of it, it just sends me in a downward spiral
  • Intense physical reactions to reminders of the event (e.g. pounding heart, rapid breathing, nausea, muscle tension, sweating) — my heart sometimes starts pounding, I tense up, and I feel sick to my stomach, when people touch me, sometimes

PTSD symptoms of avoidance and emotional numbing

  • Avoiding activities, places, thoughts, or feelings that remind you of the trauma — I tend to avoid physical human contact of any kind; women frighten me, because they tend to be so tactile, and it’s literally too painful at times, to interact with them
  • Inability to remember important aspects of the trauma — I tend to block out the particulars of painful experiences. All I know is, it’s hurt me before, like it’s doing now
  • Loss of interest in activities and life in general — Why should I get involved, if it’s just going to hurt like the dickens?
  • Feeling detached from others and emotionally numb — Oh, yes… ’nuff said.
  • Sense of a limited future (you don’t expect to live a normal life span, get married, have a career) — how precisely am I supposed to live fully, if the experience of basic human interactions promises me pain?

PTSD symptoms of increased arousal

  • Difficulty falling or staying asleep — could have something to do with my insomnia?
  • Irritability or outbursts of anger — yet one more contributing factor
  • Difficulty concentrating — it’s tough to concentrate, when you’re on high alert. Especially if you’re working with tactile people.
  • Hypervigilance (on constant “red alert”) — someone might be approaching…
  • Feeling jumpy and easily startled — but of course

Other common symptoms of post-traumatic stress disorder

  • Anger and irritability — not being able to establish comfortable human contact makes me nuts and pisses me off
  • Guilt, shame, or self-blame — why can’t I just be normal like everyone else and tolerate a hand on my shoulder?
  • Substance abuse — been there. Thank heavens that’s behind me.
  • Depression and hopelessness — my occasional visitors
  • Suicidal thoughts and feelings — once upon a time, occasional visitors. Now, very rarely.
  • Feeling alienated and alone — not just feeling… BEING alienated and alone
  • Feelings of mistrust and betrayal — it’s hard to not feel that way, when everyone around you might possibly cause you pain
  • Headaches, stomach problems, chest pain — the first two, yes. The third, not so much

So there we have it — PTSD arising from chronic body-wide pain. Painful touch. There’s even a word for it — Allodynia (meaning “other pain”) — a painful response to a usually non-painful (innocuous) stimulus. I haven’t been formally diagnosed. That would require that I talk about it to my doctor. And talking about it out loud to anyone has never really been an option for me, except for with my last therapist who is long gone by now. It’s just too painful. Emotionally and physically.

I’d rather keep my own counsel and just live my life. Pain-free. Alone, but pain-free.

Being alone not only keeps me out of arms’ reach (literally) from people who may hurt me, but it also keeps emotional upheaval at a minimum. It’s hard to get worked into a state, when you don’t have much contact with people who affect you emotionally. I can block out all the politics and social drama pretty well. But the emotional connections I have with people… well, they’re trickier. So, I steer clear of them, by and large. And I steer clear of emotionally charged subjects with people — like avoiding talking about my chronic pain issues with my doctor.

It’s wild, how emotional distress can heighten physical pain. Emotional pain sets off an alarm state with me, and that alarm state unleases a whole avalanche of stress hormones and hypersensitive biochemical agents into my system. And the buildup of all the stuff that gets “stuck” in my system does not help me. Not one bit.

Over at Healthjourneys.com, Belleruth Naparstek quotes from her book Invisible Heroes and describes it well:

Chronic Pain Conditions
This constant activation of the alarm state leads to an accumulation of metabolic waste products in the muscle fibers, and the release of kinins and other chemical pain generators in the tissue, resulting in myofascial pain and the appearance of those seemingly intractable chronic conditions such as fibromyalgia, chronic fatigue, irritable bowel syndrome, chronic headache, TMJ and more.

And because these conditions are generated in the brain stem and the motor reflex centers in the spinal column, and routed through a perturbed, automatic, arousal circuitry, peripheral forms of treatment provide only temporary relief.  Constantly activated by everyday sensory cues, normal muscle movement and spontaneous memories, symptoms grow and become more and more entrenched over time.  In other words, this is one nasty gift from the kindled feedback loop that, if not interrupted, will just keep on giving.

Our epidemiology research has already shown us an astounding percentage of people with baffling chronic pain conditions and “functional” diseases that have no obvious causes, who have been found to have prior histories of severe trauma.  Probably if we could tease out the subset of traumatized people who experienced substantial dissociation during their trauma, and a truncated freeze response in the midst of it, we might find closer to one hundred percent suffering from posttraumatic stress.  Unfortunately for them, they are often assumed to be malingering or engaged in attention-seeking behavior for neurotic reasons, instead of suffering from a very serious, self perpetuating condition with a potentially worsening trajectory.

Included in this group of maligned and misunderstood patients would be scores of people suffering from pelvic and low back pain, orofacial and myofascial pain, genito-urinary and abdominal pain; interstitial cystitis; and the previously mentioned headache, fibromyalgia (FM), chronic fatigue syndrome (CFS), and reflex sympathetic dystrophy (RSD); irritable bowel syndrome (IBS), inflammatory bowel disorder (IBD), multiple chemical sensitivity (MCS) and migraine.

And there it is — in part, anyway. The post over at Belleruth Naparstek’s blog asks Is There a Connection Between Fibromyalgia and Traumatic Stress? but it’s not just about Fibro, to me. It’s about the “and more” she mentions. It’s about the “whole lot more”.

So, what the hell can I do about this? I’m of the mind that the best reason to talk about anything difficult, is to figure out what to do about it to make it better. To reduce the quotient of human suffering in the world. That includes my suffering (I’m in the world, after all). What can I do about this pain business?

Well, first, I need to get back on my schedule. I need to get back to my sleeping routine, which I’ve been doing pretty well with. I need to get back to eating the right kinds of foods at the right times of day — and I’ve been doing that pretty well, too. I also need to exercise and do other things that will enable me to discharge some of the built-up stress from the trip. I tried explaining to my new therapist how disruptive that sort of travel is to me, but they didn’t seem to “get” the intensity of it, so I’m not getting much support there. Screw it. I’ll support myself. I’ve been having a lot of good long cries, in the privacy of my own company, over the past few days, and that seems to be helping me. I also need to get back to my regular work schedule and just get some stuff done. Being productive has a way of chilling me out nicely, so I’ll do that.

And drink plenty of water. Take some Advil before I go to sleep. Listen to the Healing Trauma CD from Belleruth Naparstek to deal with the PTSD. Have a good cry. And another. And another. And make sure I let loose in my own company, away from others who neither understand nor want to understand just how hard things are for me… and end up minimizing and negating and invalidating my feelings about what I really go through, and tell me I’m fine and I don’t have a problem and I shouldn’t worry about this stuff,  just because they either don’t have the emotional resources to hang with me, or they’d be too traumatized, themselves, if they knew what it’s really like to live in this body.

Most of all, I need to keep it simple. Count my blessings. Remember just much good there is, along with the bad. And remember, tomorrow is another day, and all things considered, I’m pretty lucky to be alive.

Moment by moment – on mindfulness and TBI

About a year ago, I had a conversation with a friend who was wondering aloud how I manage to get through life with the deficits I described to them. I had just finished telling them about my memory problems, my cognitive processing problems, my physical problems, the troubles I had when I was a kid… I didn’t hold back, but just let it all hang out. And when all was said and done, it was a lot to process, even for me (who’s been living with all that for as long as I can remember).

One of their first questions, when I’d finished, was how the hell I managed to get through life? How did I do it every day? How did I manage to make it through so many “regular” situations… not only adequately, but in fact better than many? For years, I’ve worked in high-stress, high-pressure environments that have one crisis after another. For decades, I’ve experienced job changes, moves from one part of the country to another, serious health problems that felled family members, deaths of close relatives, career insecurities, near-eviction… How did I manage to keep it all together, and actually look even more functional than others, who have not had brain injuries?

It sounded a little hokey when I said, it but the first words out of my mouth were, “Mindfulness. I just pay really, really close attention to each moment as it comes.”

At the time, I wasn’t sure that was really 100% accurate. And when I thought about it, over the coming weeks and months, I came up with a whole bunch of other ideas for how I get by:

  • mimicking others who seem to have it all together
  • being silent instead of speaking up and showing my limitations
  • hanging with good people who care about me and can help me
  • learning to ask for help in ways that don’t make me look stupid
  • learning to be stoic under any given situation, and then falling apart when I’m out of sight of others

The list goes on, of course, and the more I think about it, the more coping strategies I can come up with.

But once I got tired of thinking how else I manage to get by, I came back to my original thought, which was correct:

I get by in the world, head injuries and all, by paying really, really close attention to each moment, and living the very best that I can in that moment.

Throughout the course of each day, countless situations arise which enable me to learn more about myself and be true to that moment.

People approach me for help or input. I can choose to pay attention to them, really get what they’re saying to me, and respond to the best of my ability… Or I can pretend to listen to them, brush them off, and go back to what I was doing before.

People interact with me in stores and public places and at work. I can choose to be pleasant and polite to them, or I can be rude and impatient and make them sorry they ever met me.

Opportunities arise to make choices that will change the direction of my day. Will I dress up for work, or will I dress down? Will I take back roads to work, or will I take the freeway, or will I take the train? Will I slow down when the traffic light turns yellow, or will I speed up?

Every single choice I make through the course of each day has the potential to change my course in good ways or bad. And every action I take is both informed by my neurological profile and affects my personal relationship with my brain. It’s a two-way street. I have to both factor in the issues I have with my broken brain when I decide how to act… and deal with how my perception of myself alters, based on the outcomes of what I chose to do before.   If I neglect the former — e.g., don’t bother to remember that fatigue is a huge issue for me, and it’s impacting my ability to think and coordinate my movements — then the latter can suffer — e.g., I’ll get really down on myself for being dumb or dense or uncoordinated. Even though I know I’m somewhat impaired, I still get down on myself for doing/saying/choosing things that were better left alone. And that takes a toll… like water dripping on a rock and eventually eroding a virtual Grand Canyon through my self-esteem.

Mindfulness matters with me. Perhaps moreso with me than with other folks who are neurologically normal. Because if I want to live my life to the best of my ability, I don’t have a choice, but to force myself to be mindful. When I’m racing through my days, not paying attention to my limitations, not being mindful of where I am and what I’m doing, unfortunate things tend to happen. I rub people the wrong way. I say things I shouldn’t. I get pulled over by cops. I bump into hard/sharp objects and bruise myself. I get snarky with authority figures and alienate my supporters. I tend to end up in hot water, and then I feel just awful. I start to doubt myself. And when I doubt myself and my self-confidence takes a hit, I have a harder time just living my life later on.  Even the most basic activities can become a difficult chore, when my self-confidence has taken a hit… they’re hard enough, as it is, without the added burden of screwed-up self-confidence.

But when I slow down and focus on the present moment… When I’m totally involved — to the best of my ability — in what I’m doing, what someone is saying to me, what is happening around me… When I manage to block out everything else around me and focus wholly on what’s right there in front of me, magic happens. I become involved in my own life. I am able to see, feel, hear, and experience all-round the situation that has presented itself to me. When I can manage to stop the rest of the world from intruding, and I can slow down the action enough to devote my full attention to what’s going on in that moment, at that specific place in time, I can turn the full force of my abilities towards it, and be true to it.

Now, looking around at websites about mindfulness, I’m finding a lot of mystical stuff. Enlightenment stuff. Claims that mindfulness is the path to Buddha-hood. A cure for psychological ills. A cure for the soul. I don’t know about all that. I think that mindfulness is certainly a key part of becoming a fully conscious individual. But in my case, mindfulness isn’t something optional that I add to a personal spiritual practice for the sake of additional help. It’s a central and esential part of my day-to-day coping strategies, without which I’d be totally sunk. If enlightenment comes along with it, then great. But I’ll settle for basic functionality.

And that’s exactly what it offers me. Because when I’m not paying attention, when I’m not cognizant of the fact that I’m overly tired, when I’m ignoring the fact that I’m getting more and more agitated, bad things happen. I lose my cool. And when I lose my cool, I blow up. When I blow up, I say things I don’t want to be saying. I say things I don’t really mean. I break things. I throw things.  I flip. Trust me, it’s not pretty. And people close to me are occasionally afraid of me, which does not feel good. Ultimately, I start to close down, shut people out, stop communicating with them, start to get down on myself… and I slide down in that sinking spiral… sometimes into total and utter despair. The cost to myself and those around me is very high, when I’m not being mindful and paying attention to what’s going on with me.

But when I am paying attention and I’m aware of where I am and what’s going on with me, I can manage my limitations. I can see that I’m tired, and take a nap. I can see that I’m not following what someone is saying to me and either ask them to clarify or make a note (a real note on paper, ’cause I’ll forget mental notes). I can tell that my attention is wandering and bring myself back to the moment. I can see that I’m starting to lose my cool for no good reason and physically remove myself from the situation – walk away or even run, do something different, or just stop talking. I can prevent myself from going off the deep end and overreacting to what others are doing and saying. Just reminding myself that I’m  being “very TBI” at the moment chills me out. I can remind myself that my brain is misbehaving and I’m probably getting overwrought for no good reason. And I can stop the downward slide before it starts.

I cannot even begin to say how important this is. For myself, and for everyone around me. It means the difference between being a good partner and being a vexation (and sometimes a threat) to the ones I love. It means the difference between having a conversation and having a fight. It means the difference between finishing a thought and taking a definitive action, and getting mired in bogus details that keep me from going anywhere. It means the difference between being a TBI victim and a TBI survivor.

Mindfulness is not just an optional practice for me. It’s not something I can do now and then, when the spirit moves me or I’m in a meditation session. It’s something I absolutely positively must do all the time, in order to meet the most basic requirements in my life.

The beauty part is, because mindfulness is such a powerful practice outside of basic coping, it enables me to do the most basic things with tremendous focus and energy. Taking one small thing at a time, focusing fully on one moment at a time, allows me to use the full range of my abilities on that thing, in that moment.

And in so doing, my life becomes more than just a series of limitations to be dealt with. It becomes more than just a sequence of chores and tasks and obligations. It becomes more than work, work, and more work. My life — through mindfulness — becomes a form of worship. It becomes art.

Getting to Sleep… a meditation of sorts

I have a lot of trouble getting to sleep, some nights. A lot of nights, in fact. I have trouble relaxing, and once I am in bed, I have a hard time turning off my head and relaxing my body. Here is a kind of “meditation” I use to relax myself, stimulate my rest-and-recuperate parasympathetic nervous system, and eventually get to sleep. It incorporates pieces from guided imagery I listen to, techniques I’ve learned over the years, and elements of neuroscience.

Try it… you might like it.

First, lie down flat on your back in bed. Make sure your head and neck and spine are all aligned and well-supported by the bed beneath you. Shift your body a little bit, so that you release some tension and are better able to let your body rest fully on the bed beneath you.

Now, feel your body from head to toe. Feel how tense it is in places… Imagine that you are encased in a hard shell of tension…

Now, taking a deep breath, imagine that you are sending a deep breath down into your feet, into the very tips of your toes… As you inhale, imagine your skin is like a balloon, and your breath is expanding it around your toes and feet, inflating the “balloon” of your body…

Imagine the pressure of your expanding shell cracking the hard “case” of tension that’s surrounding you. When you have inhaled fully (and comfortably), hold your breath for just a split second and feel the little crackles of broken-up stress float free in the breath “in” your feet.

Now, exhale slowly and comfortably. As you do, imagine the little crackles of stress being carried out of your body on your breath. Exhale fully and comfortably, and when you are done, rest for just a split second before inhaling again.

Feel how relaxed your feet are, from your toes through the arches of your feet, up to the tops of your feet. Feel how relaxed your muscles are… how warm and soft and comfortable they are…

As you inhale the next time, send your breath down into your ankles, and “inflate” the “balloon” of your body around your ankles. Feel the warm breath warming your feet and ankles, and feel the rigid tension of your body breaking up into little pieces…

As you exhale again, slowly and easily, imagine the little free-floating pieces of tension being carried out of your body by your breath…

Feel how relaxed and comfortable your ankles are… Feel how warm and soft they are… almost as though they are falling into a sound, peaceful sleep…

Now, take another long, slow, deep breath, easily sending the breath down your legs to your shins, where they “inflate” the tough shell of tension around your lower legs. Feel the breath expanding the space around your calves, your shins… crackling the tension into tiny little pieces, so it can be carried out of your body…

As you exhale, feel the breath carrying the tension far, far away from you, leaving only warmth and relaxation behind it…

Keep moving up your body, “breathing into” the different hard places that are surrounded by a shell of tension, and letting the out-breath carry away those little broken-up pieces. Work your way up your body, from feet to legs to torso to arms, to shoulders, to head. Take your time and breathe deeply and comfortably. After each out-breath, let the parts of you that you breathed into relax fully and fall into sleep. Don’t worry about going to sleep yourself, just let your body relax and let all the tension fall away… It’s all good.

I have been doing this meditation a lot, lately, and on a good night, I can get to sleep before I’ve gotten past my thighs. The progressive relaxation helps me let go of the tension, and the deep breathing helps to stimulate my vagus nerve and the parasympathetic nervous system in general. Focusing on my breathing and my body keeps my mind from being driven to distraction when I’m trying to sleep. And just lying still and letting my body sink into the bed makes it possible for me to just… let… go… which is oh, so hard for me to do under waking conditions. Also, I have read that 15 minutes of conscious relaxation — not sitting around doing nothing, but actual relaxation, is like taking a 30-minute nap.  So, even if I/you don’t fall asleep right away, at least the body is getting some benefit from the experience.

I hope you find this helpful as you try to get to sleep.