Myofascial Syndrome

One of the reasons I write about myofascial syndrome so much is that it is such an orphan syndrome. It is the Rodney Dangerfield of the chronic pain syndromes. Not written about as exhaustively as fibromyalgia or arthritis, it is just as difficult to deal with. Perhaps more, because it is underrated by fellow pain sufferers as a garbage pail diagnosis. I went through three neurologists, one brain surgeon, and the Johns Hopkins neurology department before finding my neuro-ophthalmologist who diagnosed what I had. It doesn't seem to matter to fibro folks that President John F. Kennedy had myofascial syndrome. We just don't get no respect. So I write to explain what I go through hoping to help others who are searching for what the heck is making them hurt so much. Raising awareness as well as writing to heal myself.

DeFragging Muscles

When does anger end? Never unless it is consciously let go. I have stored rageful resentments, adult anger and kid-sized pouts for years in my body. I am now seeing muscles as a sort of a human computer in serious need of daily de-fragging. My somatic coach (AKA the un-crinkle guy) really helps to de-frag old issues of mine. Mind you, I knew I was doing something with the frustration because I have always and always said I stored issues too big for me in my left toe. And then I would wonder why I limped around. Hah!! My mom would laugh at me. She used to quote an Irish blessing about this to me:

May those who love us love us.

And those that don't love us, May God turn their hearts.

And if He doesn't turn their hearts, May he turn their ankles,

So we'll know them by their limping.


All I know is that mom is smiling above me....right now.


So Happy Mother's Day, Mom!!!!

And for more blessings see http://inspire.luquette.org/irish_blessings.htm

Phantom Feelings

Phantom Feelings happen whenever my un-crinkle somatic coach works on a group of muscles that feel dead to me. Prickly, prickly, prickly sensations start unfolding from muscles that froze however many years ago. I feel like a porcupine today - a day after our last session. It is almost as if the last group of muscles is still triggering responses to the work. And believe me it is work. I am beginning to be reacquainted with my physical self so I do know from where I speak when I mentioned earlier that we Americans refuse to recognize our physical/animal selves. Perhaps denying our animal-ness, it is easier to eat slaughtered meat. Perhaps it is just a part of modern life where we don't have to engage our physical selves to get to work. We use cars, bikes, trains, subways more often in urban areas. All I know is that I am beginning to unfreeze and that is an interesting indescribable feeling for me -- best categorized as relief.

Somatic Clues to Health

In my quest to un-crinkle myself, I am learning how to trust my physical self. As someone who lived exclusively above the neck, I have no idea how I stand, how I walk and how I store emotions inside. Here is a link that may help me catch myself before I do some habitual posture. Hope it helps ... http://www.wikihow.com/Use-Body-Language-Effectively

Cellular pain

I have chronic pain from myofascial. Recently though I have been getting help dealing with it from lots of people. The thing I am realizing is that bodies hold pain by habit. Habit. From the way I hold myself that causes pain to the way I deal with it by freezing up more. It comes down to darn near the cellular level. Habit.

Choices in Life

Choices, arrggh!! I hate making choices. What I finally realize though is that I ultimately am the choices I make in my life. I bump into this lesson daily as I face the morning and evening commutes and other issues that demand attention by rubbing me the wrong way. I have a theory that things that bug me are actually invisible cats who are rubbing themselves on my legs to get attention. The more I ignore them or the more I dwell on how they make me feel, the more insistent they become. I need to do what Thict Nhat Hanh advises in his book called "The Heart of the Buddha's Teaching" and say "hello, there you are again," to the irritations instead of becoming fearful of them and freezing up. So my path today is to be grateful at being reminded that I am here in this world and in the now. Ownership of life comes with a daily mortgage that must be paid by my paying close paying attention to it. To fail to plan is to plan to fail. And choices are a huge part of that.

Swallowing Frogs and Illness

This is a snippet from a JSTOR Abstract that fascinated me. All too often I find I "swallow" fear and anger to fit in to a job, a family, a life that is ultimately not my friend. And then I ignore how I feel and continue on with my day. Well, when I saw this paragraph, I knew other women did the same thing. And oddly enough, they have a wonderfully graphic way of describing the process.

"Northeast Brazilian women use the term "swallowing frogs" to describe the act of suppressing anger, hatred, or irritation and of putting up with unfair treatment silently. Most are all too familiar with both these situations, and their anguish finds its expression in folk ailments that embody distress such as evil-eye sickness (mal olhado), "nerves" (nervos), shock sickness (susto), open chest (peito aberto) and blood-boiling bruises. These interrelated syndromes reflect the difficulties of suppressing unsanctioned emotions and of convincing oneself to feel what is socially expected while maintaining proper emotional demeanor. The syndromes are related to a folk theory of strong negative emotions (anger, envy, anxiety, fear) causing both social and physical harm."

Contact JSTOR


Until then

Point of View

John Donne said no man is an island but I am such an isolationist. I lament never knowing people who die because I am afraid to get to know them. Fear...is such an invisible motivator for me. I want to fit in, I want to get to know people but I work against that clear water of ... well, fear. So the best I can do some days is just make a kind remark and then run back into my safe place. But is isolation a safe place or is safety an illusion? Meanwhile, enjoy the picture. It is a very famous Lake Erie Island. Looks beautiful, doesn't it? There was a Confederate Prison Camp there during the civil war. So where is safety? It is all in your point of view.

Focus with Chronic Myofascial Pain

I always thought I had pretty good mental focusing and stress. Not great, not bad, just good. CMP is making me re-evaluate my ability to focus on projects and deal with stress on the job. It is bringing me down on one end (physically) while elevating me on the other end (spiritually). A see-saw effect that is good and bad at the same time. See my prior comment a while back about teeter tottering with King Kong. Not easy....

Pain and Spirituality

When pain nailed me to the floor a few years ago, I turned to the spirit and prayer because the pain medicine didn't work. And I started thinking about my soul's path. As usual with me, my road is complicated. I had been feeling disconnected from the synagogue and in fact from Judaism in general for a long while. So after much thought I turned more and more to Buddhist studies -- specifically Zen. Zen concepts are integral in Eido/Kendo which I studied for so long. And I found a community of Shin Buddhists (very closely related to Zen on the Tree of Buddhist thought) near where I live. It is the first religious community that didn't feel threatening to me by the people who were already there. I am a sensitive (ha!) soul and part of the daily pain I go through physically with my myofascial is a hunching up of my shoulders to defend myself. I have hunched my whole life. But I don't hunch here and my "hunch" (you knew I would do that, didn't you?) is that I have finally found what I am told by several spiritual counselors is my soul's path. It fills that hole in my soul and offers me a way of giving back to the stream of life through compassion, serenity, community, food, and prayer. And the emptiness is lifting.

So How...Do Coping Skills Work

Coping skills. My neurologist told me yesterday to take my migraine meds at the first sign (usually a pain behind my eye) of a migraine. Today, I was at a staff appreciation happy hour and started to feel bad. I left and took a pill and I feel much better now. The trade-off, though, was the I missed collecting the prize at the final secretary drawing for the week. I gave up the firm's prize which would have stoked my firm image to the better prize of no pain. I think I won that bet. It all goes to what is more important -- taking care of myself or taking care of my image.

Channelling Anger and Desperation

When animals chew paws off to escape traps...it is called smart or weird depending on your point of view. I know now from personal experience, that the gnawing is alive and well for me. When I hurt, I claw at myself. I don't have tattoos. I don't need them. I have scars instead. So finding a way to contain the pain is essential if I want any skin left unclawed. And I don't work well with any of the migraine medications to prevent migraines. And the pain medications prescribed are pretty much no better or worse than OTC meds. I guess that's pretty lucky because at least I don't have to worry about getting hooked on a serious drug. What I have found is that Excedrin Migraine works very well for the body aches. And other things like naproxen work well too for pain prevention. With a backup plan like the only migraine med that works for me, I am in as good shape as I can be in. Now if I can only find some other way to channel the anger at the pain...

What Pain Drains is Hope

The only downside to seeing my doctor is that he always needs to check the amount of mobility and where my bunched up pain is lurking. He is so skilled that he hits each spot where it hurts and in myofascial syndrome that means it hurts on the same identical nerve on each side of the body. So if my right shoulder hurts at one spot, my left does too. At exactly the same place. Ouch. So now I need to take some otc pain medicine to help with the reaction to being checked out. If I don't my migraine will return and drain away the hope I have of feeling ... better, whole, well again.

And the Answer is "Desperation"

I just saw my doctor who is amazing, caring, perceptive and patience itself when dealing with me. I always come away from seeing him with renewed hope and a sense that I am not alone. Pain is such a lonely drain. I tried to describe what motivated me to up my medication without consultation. He waved my words aside by just saying "desperation." And he is right. When I hurt and hurt and hurt and see no end to the hurt, I get desperate. Trying not to make the pain worse by holding on to it is upper level pain management for me still. So I just do the simple things like change to ergonomic mouse ware (I need to find ears for this mouse) and small keyboards so I won't have to move my shoulders so much. Myofascial freezes me into an arms at my side position (think of that show "Six Feet Under") only I am the one in the box. It is no fun. So anything that helps me loosen up -- heating pads, talking to friends, seeing my doctor when I am desperate helps. Until then,

Letting Go

Death and Dying -- Elisabeth Kubler-Ross. I read this book years ago. I need to re-read it given some of my recent experiences and insights from them. What I remember most is that she discusses the stages of grief. There are five of them. Here is a link for those who never trust authors and want to get right to the facts. I know who you are because I am just like you too. Stages of Grief I just wish there was a better sort of manual for how one goes on about life after loss, whether through great change like leaving home, through the loss of a beloved partner, through separation, through divorce, through kids going to college. As I let go of who I was, I find I still need to be that person sometimes. There are often so many resonances of the old personna that intrude. After all, when a marriage breaks up there are usually kids, custody, and continuing conversations of how to deal with one kid or another. It is a confusing split view on reality. I haven't found the books that address this issue directly. So, for now, I guess the best I can do it just go on. And eventually I will find I haven't lost a life, I have gained a greater and fuller perspective.

Anger and Stuff

I had an epiphany tonight. I don't have to hold on to anger. Not in my muscles, not in my head and not in my soul. No wonder my shoulders hurt. I have been bunched up for years with anger that really needed to go to another place, another time, another world. A world, a time and a place I left long ago. Heck, I even get angry at the pain. So I know I am a clutter bug, I know I collect things, I know I am a hopeless fantasy/myth/medieval geek. But I also know it is toxic for me to hold onto emotions that have outlived their time and usefulness.

Ah, so this is what spring cleaning for the soul feels like.....

Ah, Permission Slips

Permission slips are a daily thing in a household with school age kids. But I never realized I needed to give myself permission to start a new role as a new 'me.' I mean the change in legal status still has me staggered. How do I suddenly give myself permission to become a new "me"? Whom do I ask for permisson to do that? I am sure it looks easy from the outside but I am just now realizing how hard it is from the inside. And it has taken me a very long time to realize that granting myself permission is not just about staying up late and watching tv. It is about deciding what I like, what I want to spend time doing, how I deal with anger, how I deal with frustration, how I deal with loneliness, how I deal with fear, how I deal with the anger I have at the pain that has taken over and constricted my life, and generally how I deal with life. Tonight I discovered the person who needed to do that -- me. So yeah, lots to think about. Think, not fester, not rage. Just think and check in on how I am handling the permission slip thing. Oh, yeah, and make sure I give the permission slip to the right person -- me.

Orphan Diseases

I never knew anything about orphan diseases until I got sick three years ago. Then I discovered real quick that some diseases are orphaned by doctors and drug companies because they don't pay. The people who have orphan diseases are chronic sufferers. I had to deal with a bunch of doctors to get diagnosed for what ultimately turned out was wrong with me. Sadly, it is chronic. There is no magic pill to take, no magic massage that will help, no sleep therapist who can help me get the rest I need. So it is really annoying for me to deal with most doctors at this point. And that is with healthcare. I shudder to think how I could deal with this if I didn't have insurance. So I watch Congress's hand wringing about healthcare with a very jaundiced eye. How can Congress deal with this mess other than kick the insurance companies in their collective behinds? The lobbyist groups won't let that be done. They won't let that be done because investors' lose money when a disease can't be cured, when a disease can't be advertised on TV so drug companies can sell more pills. And chronic pain can't be cured. There is no money in it. So why hurt the investors' bottom line spending money on someone who is always going to hurt? For a better definition of living with pain read this link... http://www.butyoudontlooksick.com/2006/02/the_spoon_theory.php

Cats adapt and so must I

Where am I today? Home sick. Head hurt too much to even try to drive in to work. I suspect it was a good thing because today was the fixit man's time to repair the damage done by the renters who lived here before me. A case of bored bull dogs meet windows and window frames. Between the migraine and monitoring the repairman, I am exhausted. And now he is gone and I get to put up the curtains again. I am trying to avoid thinking about that by telling myself the paint on the trim still needs to dry. Sigh. And on top of that? The ledge where the cats loved to soak up the sun is gone now. Bigger sigh..... Ah, well.... Cats adapt and so must I.

Cell Phone Alarms and Dancing Sheep

What on earth did I do without my cell phone? I used to think of it as an electronic leash. Now it is a lifeline to connect with folks who matter. And even handier are the alarms I can program in. Alarm clocks don't work for me. I have a hard time falling to sleep and a harder time waking up. Now, though, with the Nokia cellphones, I can program in intervals of beeping that interrupt me at my rest. Even better? I get to see sheep dancing about on the screen which puts a smile on my face. And smiles are few and far better for the sleep beleaguered. Thank you, Nokia software folks. Thank you.