It was 1 of those “good news, bad news’ sessions.

The good news?

After reviewing 30 years of my medical history, he discovered that there was “nothing wrong with me physically”.

YES, you heard that correctly!

YES, I have been diagnosed with Fibromyalgia Syndrome and Chronic Fatigue (CFIDS). So, how is possible that with so much muscle pain, so much exhaustion, there could be nothing wrong with my body?

It’s simple really.

Very recent research into the mechanism by which Fibromyalgia operates suggest that it is due to a dysfunction of the Central Nervous System (CNS). That means the problem is in the brain, not the body.

Therefore, as I understand it, the myriad of symptoms experienced by Fibromites are the result of CNS problems.

Here’s how that news has freed me up.

If there’s nothing wrong with my muscles — well, other than the fact that 14 months in bed have atrophied them to some degree — then there’s really nothing preventing me from doing stuff. Stuff like walking, hiking, running (except I don’t DO jogging), making love (except I don’t have a lover).

So, for the past 2 weeks, I’ve hiked my butt out of bed first thing in the morning. And, gone for a walk.

When I first started I could walk  for 1/2 an hour and travel 6 blocks. Now, I walk for an hour and travel 30 or more blocks. YIPPEE!

I’m pumped!

Morning walks have been an integral part of my Spiritual / Creative Practice. For it’s on these walks that I have the alone time I need to ponder, mull, and compost ideas. And, to dialogue with God Within Me.

Starting my day this way is critical because it gets me calm, centered, and focused on what’s important. And, because it connects me to Spirit.

I’ve noticed important improvements in my life. For example, on the weekend I drove to the foothills west of Calgary and hiked in the wind.  Why is that a big deal? Because normally — whatever normal is — wind provokes massive pain. And, it didn’t! YIPPEE!

What’s the bad news?

Tune in to the next post to see why the bad news is really good news.

One of the biggest is the sheer unpredictability of it. For example, 2 days ago I was able to hop in the car and drive to and from the Town of Canmore, to have lunch with my daughter. Being able to drive 2 1/2 hours round-trip doesn’t sound like much. But, for me it’s a major accomplishment. Normally, when I travel to the mountains I have to space my driving out over 2 days: driving to my destination 1 day and returning a day or 2 later.

What was even more astonishing was that fact that it was incredibly windy. Normally wind gusts provoke pain but not that day.

Yesterday was a whole different story.

The winds started blowing around noon and my ‘friend’ pain paid a visit. Pain is a ‘friend’ in the same way that a woman’s monthlies are a friend.

Over the course of the afternoon the pain ramped up until I could barely walk. The problem was that I was on the other side of the city, about 40 kilometers and a 1/2 hour drive from home base. Gritting my teeth, literally and figuratively, I drove home and collapsed into bed.

Why  bed? Well, quite simply when the pain becomes off the scale the only ‘treatment’ is sleep. Luckily I can sleep even when in excruciating pain. Many Fibromites can’t.

I slept for some 11 hours and crawled out of bed at 6:30 today. Emphasis on crawled.

Because I am in the high phase of my SAD I can operate in spite of the pain. It’s called COPING.

When severe pain strikes I am forced to go to Plan B … or even Plan Z.

I had planned to do some copywriting today. But, that requires too much creativity, too much inspiration. And, my inspiration gets blocked by the pain.

So, I have to find other things with which to distract myself.

Why distract?

Because 1 of the ways to deal with pain is to distract oneself. 1 way I do that is by writing … but not creative writing. Somehow, I am able to blog but I can’t seem to do creative writing. But, then when I am depressed I can teach workshops but I can’t market them. I guess creation just requires too damn much energy.

Other ways I distract myself include Facebooking, Twittering, reading blogs, watching videos, IMing, and  talking on the phone.

Another strategy I’m going to implement is 1 I used 28 years ago when I was clinically depressed. You can probably imagine how little get up and go 1 has when depressed. So, what I came up with was a check list of things I could do when depressed. Naturally, I created the list when I wasn’t depressed. I kept it in the top drawer of my desk at work. And, whenever I was really, really depressed I haul it out. I’d look at the list and see what ‘task’ on the list I thought I could manage to do.

So, I’m adopting the same idea now. I’m going to create a List of things I can do when I’m in pain.

Then on days like today I don’t have to THINK about what I can do, I just look at the list and pick something.

FIRST thing on my list will be, of course, TAKE A NAP!

Copyright 2010 Lyle T. Lachmuth  All Rights Reserved

I am thinking that I may need to drop my dosage of Effexor.
But, first I am going to cut out doing my light therapy.

Man my brain is racing but my body is tired. Used to be that
I could go for days on only 3 hours of sleep. Now the old body lets me know
right away just how unhappy it is.

That racy brain, tired body feeling is crazy making. It must
be like the mixed moods of Bipolar Affective Disorder: manic and depressed at
the same time! Who hoo!

It was nice to walk back from the service station with the
temperature at 0 Celsius (32 F). But, man some of the sidewalks are icy.
Homeowners who don’t shovel their sidewalks should be spanked at the very
least. I had to cross the street to find an ice free sidewalk and nearly got
run over by some yahoo speeding. People in this city are in too much of a
hurry.

The challenge today will be to figure out how to stay
focused; and to actually get something done.

I’m trying the timer method: 30 minutes to write and post
this, for example. And, ignoring the email arrived signals Gmail sends. Turning
the radio off to reduce stimulation. Closing my eyes and taking a deep breath
to regain focus. Stretching my neck and upper arms every few minutes when I
notice them, which is usually when my eyes are closed.

Wow. This only took 13 minutes to write. Now to post it and
then on to private reflections.

Bone grinding pain every day sucks no question. But, it's harder for me constantly shifting from pain to no pain and back to pain again.

Take today for instance. (PLEASE take it!)

My pain went away yesterday about 11 in the morning. And, I had a good afternoon. Even got some small changes made to my website.

Then I woke up this morning feeling like I'd been run over by a semi. Achy all over and tired as sin.

And, it's that shifting from no pain to pain that I find immensely discouraging; particularly since these days it seems to be happening every other day. I don't know if the pain feels worse because I'd gotten my hopes up a teeny tiny bit or because it really is worse.

Then of course my rational scientific brain. or at least the part of my brain that still is, kicks in and tries to figure out THE REASON. Why pain today and not yesterday? What did I do wrong? What didn't I do that I 'should' have?

It's probably the damn weather: it's Chinooking again. Massive pressure shifts and a 20 degree F temperature shift from yesterday. And, if it IS that what the heck can I do about it? Move? Hardly. So, it's ride it out — AGAIN!

What's the worst thing about Fibromyalgia?

Can you say P A I N?

Here's a way for you to get a glimmer of the pain experienced by Fibromites. With your dominant hand reach over to your opposite arm. Grasp your arm about a hand's width above your wrist's flex point. Now squeeze as hard as you can. Come on you can squeeze harder. Hurts doesn't it.

The pain you are experiencing is probably about a tenth the severity experienced by me on a bad day. Trust me, every time I have pain it IS a bad day … the pain is rarely less than top scale severe.

Now imagine having pain of that degree from the tips of your tops to the top of your butt. And, from the tips of your fingers to the tops of your shoulders. 

Got that picture in mind. Okay, now imagine having that all over pain, every waking hour of every day for weeks on end.

Not pretty is it?

In fact it sucks. It sucks because the pain keeps you from sleeping. And, sleep is what you need to repair your body and mind. It sucks, because the pain exhausts you. So, that one those rare days or hours when you have no pain, you also have little energy: mental or physical.

Here's another way to understand the degree of pain.

A few months ago I wound up in the Emergency department of the hospital because of pain in my lower right quandrant and an elevated white cell count. The doctor in the walk in clinic thought I might have appendicitis. Many hours later a CT scan showed that my problem was a kidney stone. Now I was told by a woman in emergency, who was also suffering from a kidney stone, that having a kidney stone was comparable to labour (neither one of us were able to give birth to our stones because they were too big). As severe as the pain from the kidney stone was, it was so much less than the pain from my Fibro. It was like a mild sunburn compared to a third degree burn.

A friend of mine who suffered from Fibro committed suicide because she couldn't stand the pain. I don't blame her one bit.

Chronic pain is a bitch!

It sucked!!

Rain. Cold. Damp. Wind. Almost guaranteed to bring on pain. And, they did.

It was a shitty, cold, damp day yesterday.

And, I was in pain all freaking day.

Here’s what I going to do to ‘ensure’ this pain doesn’t continue.

One, I’m adding a new item to my daily Walking practice.

Each day, just before I finish my walk I will ask myself, "What will I do for myself today?"

The second thing I’m doing is this: Every Monday I will go through my calendar and block off AT LEAST 3 ME TIMES!

For example, I marked off 3 2-hour periods of time this week that are reserved JUST FOR ME!

I don’t know yet what I will do.

BUT, I do know what I won’t be doing.

I won’t be spending the time on anything or anyone else!

It’s MY TIME!

I like that phrasing.

People – well meaning, caring – people are always suggesting
– sometimes pushing ‘cures’ at me!

Look folks! I know you think you have the answer.

And, maybe you do.

But, god damn it! This is my freaking life.

And, I will resist your good intentions.

It’s not that I don’t want help.

It’s that I have lived with this mofo condition for 11
bloody years now.

And, fixing the freaking thing is MY responsibility.

And, I will do it at MY pace!

And, My way!

So, when you suggest that I should:

· Start taking massive doses of Vitamin Z,

· Get Rolfed,

· Or Whatever….

I will Thank You. Take note.

And, give it shot when I’m bloody well ready to.

Not before.

And, maybe never!

Got it?

and ways to heal that pain.

The basics: We are wired to FEEL pain. Why? To protect us.

We touch the hot stove. We HURT! We pull away. Phew! No, more burny.

But, what the heck do you do when there is no apparent cause for the pain?

This is the case for folks like me who suffer from Fibromyalgia Syndrome (FMS) and other dis-eases.

So, what’s a person to do.

When I was diagnosed I was told, "Well, there’s not much I can do for you!" That by an Internal Medicine Specialist.

That’s when an 11 year — and counting — journey of research and experimentation began.

Here’s 3 strategies I practice daily:

1. Walking
2. Stretching
3. Relaxation

More on it’s way.

I’ve been struggling with severe, incapaciating pain for the last 2 months.

Some things I conciously did, like neurotherapy for my fibromyalgia, worked — that is, they helped reduce or eliminate the pain.

But what’s been really crazy making  is that one day or even for several days I could be pain free and then BLAM! For no apparent reason I’d have several days of killing pain.

And, I wouldn’t know what made the difference.

Must be that need for control.

Anyway, recently I made the following comment in an email to my coach, "It seems like the days on which I have no goal or purpose are the worst."

I got thinking about that.

And, when I was in real pain at bed time I decided to set  a purpose for myself for the following day. Not a big, humunguos purpose. Just a commitment that I would spent a couple of hours writing about what I might do to build my coaching practice.

And, the next day I woke up pain free.

Now, this is ONLY 1 day we’re talking about so far. But, I’m hopeful… gotta be!

What if this is one of the  keys to pain freedom?

Then purpose really would be a healing thing.

I’ll keep you posted.

It’s got me thinking about the relationship between pain and pleasure.

I’ve noticed that when I feel the building rush and tingle of sensual pleasure… and push it down, suppress it… then I immediately feel the crush of myalgic pain.

I wonder how much this has to do with being abused as a child.

Was pleasured followed by pain? Were they somehow inextricably linked?

Or, is the repression of fundamentalism that paints any hedonistic feelings as BAD?

I don’t know.

All I do know is that when I breath and let the pleasure flow… the pain goes or doesn’t even come.

Tags: Pain Relief