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.

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Yet more thoughts on TBI and mental illness

This morning (6/9/9), I took a gander at the ways people have been finding their ways to this blog since I first started it over a year ago.

  • 38 people got here by looking for info about TBI/brains and anger/rage
  • 86 got here just searching on tbi
  • 156 got here by searching for info on interviewing
  • 39 people got here by searching for brain info
  • 225 people found their ways here by searching on tbi and mental illness

Apparently, it’s something people are concerned about.

And so am I.

I’m worried. Really, really worried. Because this society seems all too eager to label people “mentally ill” when they really have logistical problems — it’s not necessarily that they aren’t thinking properly, ’cause of some inner psychological conflict going on — it’s that they can’t think properly, ’cause their brains have been rattled or somehow impacted.

And our society seems all too eager to prescribe medicines for psychological conditions — meds which may actually exacerbate the issues at hand.

For instance, as I understand it, the irritability and temper flares that come with TBI are often due to a “constant inner restlessness” that takes up residence in your head after a brain injury. That constant restlessness can be directly related to something called “tonic arousal” which (as I understand it) has to do with how awake your brain is. After TBI, certain functions slow down — processing slows down, connections that were once intact are now broken, so it takes the brain longer to sort things out. And with that slowness comes a decrease in tonic arousal… which also can lead to attention difficulties… which can feed into all sorts of problems that can make you nuts and drive you to distraction.

TBI >>> less tonic arousal >>> increased irritability >>> more meltdowns, rage, blow-ups, etc.

Now, let’s say some doctor or psychiatrist gets hold of a TBI survivor and diagnoses them with some anxiety-related condition, or some other “psychological” dysfunction. Let’s say the attending caretaker prescribes one of those “downregulators” that slows down the processes that can feed into manic/anxiety type experiences. What do you get when you downregulate someone who’s already struggling to keep up? Decreased tonic arousal. Which can mean more irritability, more temper flares, more rage, more meltdowns… possibly increased violent acting out? Maybe?

Downregulating meds >>> even less tonic arousal >>> even more increased irritability >>> more and more and more meltdowns, rage, blow-ups, etc.

I’m not a doctor, but I don’t think you need to be one, to get this connection. Maybe not being a doctor helps you see it all the clearer, without the long-term effects of that sleep-deprived-traumatized-resident fog that lots of docs get hammered by when they first start practicing.

This really worries me — had I mentioned that?

And given how many people sustain TBIs each year, not to mention how many vets are returning from Iraq and Afghanistan with TBI’s and PTSD, etc., it really opens the door to a lot of crappy medicine and pain for the families and friends of the folks who have given their very brains in service to this country.

I think the only thing we can hope to do is educate people — not so much the doctors, because how many of them are listening? It’s about educating “the people” — the patients who look high and low for help (if they ever figure out that they need — and can get) help. Making sure people have access to truthful and accurate and independent information — and giving them easy and useful ways to wield that info as they defend themselves from the quacks of the world, not to mention Big Pharma.

Ultimately, it is up to each and every one of us to fend for ourselves, but a little help would be nice, now and then…

A TBI toolkit for your doctor

Heads Up: Brain Injury in Your Practice – A Tool Kit for Physicians is an information packet about TBI developed specifically for doctors. If you or a loved one has sustained a TBI, you may wish to considering passing it along to your PCP.

From the site:

An estimated 75%-90% of the 1.4 million traumatic brain injury-related deaths, hospitalizations, and emergency department visits that occur each year are concussions or mild traumatic brain injuries (MTBI).

Many individuals who sustain an MTBI are not hospitalized or receive no medical care at all. An unknown proportion of those who are not hospitalized may experience long-term problems such as persistent headache, pain, fatigue, vision or hearing problems, memory problems, confusion, sleep disturbances, or mood changes. Symptoms of MTBI or concussion may appear mild, but can lead to significant, life-long impairment affecting an individual’s ability to function physically, cognitively, and psychologically.

Physicians can play a key role in helping to prevent MTBI or concussion and improve a patient’s health outcomes through early diagnosis, management, and appropriate referral.

In response, CDC, in collaboration with an expert work group, has recently updated and revised the “Heads Up: Brain Injury in Your Practice” tool kit. This tool kit is available free-of-charge and contains practical, easy-to-use clinical information and tools, including:

  • a booklet with information on diagnosis and management of MTBI;

  • a patient assessment tool (Acute Concussion Evaluation or ACE);

  • a care plan to help guide a patient’s recovery;

  • fact sheets in English and Spanish on preventing concussion;

  • a palm card for the on-field management of sports-related concussion; and

  • a CD-ROM with downloadable kit materials and additional MTBI resources.

Oh, look – there’s hope after all…

Great info over at The Rogue Tomato about The Bravewell Collaborative and their recent Summit on Integrative Medicine.

I’m just now finding this, myself, so I don’t have a lot to say about it. But it looks quite promising — especially since the Summit involved some very established physicians from some very established institutions.

If they’re paying attention to this, then my day just started looking a little brighter.

Which just goes to show, it’s never a good idea for me to completely lose hope. I don’t know nearly enough to despair responsibly 😉