Chapter 5 Managing Pain

1.      What is pain? 

Sylvia:  When I was in hospital this last time, it was because I could not get past the pain.  I became debilitated with it to the point that I could not even function and take care of myself in my own home.  At the time I was hospitalized I was depressed because the amount of pain had worn me down.

Pain is an enigma, a paradox, a puzzle unsolved.  Scientists have been able to locate the source of pain in our brain, and establish a way to measure an individual’s pain by the amount of Substance P we are producing in our spinal cord to try and alleviate pain.  It is possible to say the most people with Fibromyalgia have three times as much Substance P as a normal person.  But we have no way of comparing one person’s pain to another’s.  The term pain threshold is batted about to anyone suffering it, a doctor can only guess if your pain is extreme or minimal, depending on if your pain threshold is high or low.  It is common for us to compare our suffering to what we imagine is someone else’s.  But how can we know that our hours and hours of what we consider excruciating pain are actually less painful than our friend’s pain during a single migraine attack?  Is my pain threshold lower than hers, so that less pain affects me much more?  Is the amount of pain she experiences actually less than mine by some standard measure science hasn’t found?  Does the location of pain make a difference?  Surely the existing condition of the person in pain has to be factored in?  We can only come from our personal experience of pain, and that causes a lot of complications in the lives of those around us.

Maxine:  My family knows that I keep most of my pain to myself.  The best way for me to deal with it is through denial that it exists.  If they ask me about it they are asking me to focus on it.  As most of them deal with pain the same way, this works for us.

The need to move past pain and get on with life is common among the people I interviewed. Many of their family members and friends witnessed how bravely they face the day without complaint, even though they are in pain.  But this leaves a lot of room for miscommunication.

2.      How do you talk about your pain?

Veteran sufferers don’t talk about their pain.  Depending on the person, this can be for a number of reasons, or a combination of several.  A great many expressed concern that they would be given pity or be perceived as whiners.  Some don’t talk in the hopes of protecting their loved ones from emotional pain.  Some are deep into the martyr role.  And some think there is little point.  “Talking about it doesn’t make it go away,” she’ll say.  This commendable choice to put the best face on things often has a backlash.  In refusing to acknowledge we are in pain we cause those we are trying to protect frustration and a feeling of being left out of our lives.

Realizing, then, that reticence is a roadblock to understanding on the part of your support team, it is in everyone’s best interest for you to develop a communication system for pain.  Those around you love you but they’re not mind readers.  You have probably been giving them mixed signals for a long time.  One day you snap at them if they ask how you feel, the next you complain that they’re insensitive and not taking your “horrific pain” into account when they ask you to do something with them.  Or they might ask and you bravely respond “I’m okay” when they can clearly see you’re not.  Does any of this sound like you?  I know I’ve played all these games and taken my poor spouse, children, parent and siblings through a roller coaster of uncertainty.  I think I am typical of a chronic pain sufferer.  But while we’re acting like a weathervane in a hurricane we are modeling poorly for the people in our lives, and teaching them the same dishonest responses for their future handling of pain.  Let’s all grow up and model commonsense roles to each other.

“There is not a day I don’t have pain. If I didn’t have pain that wouldn’t be normal.”  Carrie

 a)     Tell them when you are in pain

 It is important for you to know that caring and support are available when you are in pain.  It becomes your responsibility to keep those who have expressed concern and a desire to help informed at the level that allows both of you peace of mind.  However, I am not telling you to do a ten-minute monologue on “what hurts today”.  I am telling you to keep them informed.

Phillipa:  It is only in the last years that I’ve been able to communicate to them, “ this is what to look for.  This is what you need to know.”

Maxine:  I talk about how I feel with close friends and family who ask because they want to know.  I measure this carefully.  If they are already loaded with their own problems or just asking to be polite, I usually segue to another subject without telling them I’m bad.

“Everybody in our family tends to cope like a duck.

You can’t see that under water we’re treading like hell.”  Jeanette

 b)     Tell them when you’re not in pain

You can alleviate some pressure on those who care if you volunteer information when you are having a good day or are pain free. Usually its such a surprise to me I don’t catch on at first.  But when I realize what’s different – that there is no pain right now, I share my jubilation with everyone.  It immediately brightens their day, too.

This helps everyone who matters feel better because it lessens their worry.  Sometimes a pain free day results in your ability to do a little extra physically.  This is a great day to plan a surprise treat for the family.  Maybe you can say “Let’s all go out to dinner while I’m feeling up to it,” or “Let’s have our friends over for coffee, and dessert, I felt good enough to make pies.”  Your joy in being pain free can spark new joy in them.

c)      Give them a status report

So ideally then, you want to let everyone on your team know how you are that day. The simplest method is to make an announcement first thing in the morning.  Members on your team will then automatically pass this information on to others who care or need to know.  An announcement should be brief and to the point.  Eliminate emotion-grabbing descriptions of your pain and stick to the facts.  If you tell your husband and children “The pain is horrific, I feel like dogs are chewing off my leg”, you are going to leave them feeling like you’re just “ripped their guts out”.  Rather give them a status report and a comparison. “My pain is severe, but slightly less than yesterday” will allow them to factor in how you behaved yesterday, what you needed done for you.  It encourages them.  If you want to model good pain management you can add a positive comment like “but I know I can handle it today” or “we did a good job yesterday so it’s slightly better today.  Yea team!”

You also have to deal with many other people in your life who may not even know you are ill.  Consider the grocery clerk who keeps you standing in line while she chats endlessly to her customers.   As your experience increases, many of you will prioritize protecting your health over worrying about some one else’s feelings.  No, I’m not telling you to be rude, there is always a diplomatic way to state your case.  However, I am telling you that you must learn to take care of your needs rather than stay quiet out of the misguided desire not to embarrass someone.  Remember the clerk and the people in line don’t know there is something wrong with you.  You’re suffering an invisible disease.  So state your needs – tell them to their face “pardon me, I am in considerable pain and wonder if you could have your chat later.”  This brings them to an awareness of the situation around them.  Most people will respond quickly to a nicely spoken need in another.  Telling them to their face includes requesting a chair in a waiting room, a seat on the bus.  It means explaining to great aunt Tillie that you must sit down while she tells you in detail about her gall bladder surgery.  It means explaining to your grandson that you can’t pick him up and swing him like you used to.  It’s simple.  It means being honest with others.

d)     Use a set of signals

You may feel that making an announcement every morning is drawing the spotlight onto your self and making a bigger deal of your pain than necessary.  Some families, especially where children are involved, come up with a set of signals.  This can become a game in which everyone takes part.  You may have a whiteboard with a scale from one to ten and throughout the day you register your pain level on it.  Most probably it will be lower in the morning when the family members leave the house.  But science has proven that pain levels go up in the late afternoon, as chemical changes occur in our body.  Therefore, when the kids come in the door after school you are probably feeling much worse.  It is important for them to be able to make this distinction.  You might have a series of signs for the back door – ranging from “happy woman with fresh baked cookies inside”, to “witch demanding silence has taken over the house, enter at your own risk”.   Make your Pain Register a family project and let your imaginations go wild.

A set of secret signals should also be developed between you and your partner and children and other adults who are actively involved in your life.  You will want signals for social occasions.  Waving a white flag or tissue might convey to your husband “get me out of here before I scream”.  Shifting a book from one side of your bed to another might be your signal that the visitor has stayed too long and a child or adult should invite them into another part of the house.  You might signal “I don’t wish to discuss my health”, “no, please refuse the invitation I don’t feel well enough”.  Again, a signal is not a method by which you dump the hard jobs on other people.  You are perfectly capable of stating “thank you for inviting me, but I don’t feel well enough to attend.”  The signals are for times when the person with you needs to know your response so they won’t inadvertently catch you in a situation that causes you more pain.

e)     Don’t play the martyr

Several women I know have made this role their life’s work and honed it to perfection.  The martyr is about being dishonest – with yourself and with others.  More seriously, it is about manipulation – my particular hot spot.  It almost always adds to the dis-ease of the situation and your physical condition.  Why?  Because in order to play the martyr effectively you have to work yourself into the self-pitying, hard done by, willing to sacrifice it all role that means you are sending many negative messages from brain to body.  Martyrs play word games “that’s okay honey you go ahead and watch TV, I’ll get the dishes done, even if it does take me all night.”  A preferable response is something my mother-in-law always says.  “It doesn’t take long when there is two of us.”  So share the chore with someone, then you can both enjoy what comes next.  Above all, sink your pride, stubbornness or whatever else is getting the way of asking for help when you truly need it.

2.      How can my support team help me deal with my pain?

a)     Help them recognize the signs of pain

Phillipa:  There is a part of me that feels that my husband and daughters should be able to tell when I’m in pain.  When I start shrinking into myself and getting more and more non communicative it is because I’m getting sicker.  Maybe over time they have come to be able to see that and understand it, but it has only been the last few years.

Those closest to you often know you well enough to recognize the physical changes that indicate you’re in pain or pick up on the signals you send out when you are in pain.  Dealing with chronic pain tends to happen in stages, and those around have to follow through the stages or they get lost in the process and never clearly understand what to look for.  The first stage is easy to tell.  You are in pain without doubt.  you express this freely.  You might be experiencing this much pain for the first time so you are frightened and anxious.  As you experience long term pain you begin to adjust to it. There is less fear and anxiety, so you are less tense and more competent at coping, so you exhibit fewer physical signs.   Those around you will learn to read less noticeable signals to know you are in pain.  Finally, you become so used to the pain that those small signs also become less noticeable.  You may be using distraction and other methods to cope, so you are not focused on the pain any longer.  The veterans dealing with pain have a new set of signals.  It might be that they become quieter (instead of moaning) or pull back (instead of participating).  Most often those in severe chronic pain say little about it and put on a cheerful mien.  But the physical signs are there.  Your skin will seem stretched more tightly on your face, be more transparent and take on a grayish pallor.  You hold yourself more carefully, you move more slowly and a lot less.  If the players on your support team are astute and have lived through the process with you, they will recognize these signals as well.

b)     Draw a line in the sand

The line sets your physical limits.  Beyond this line you do not go. It is for your benefit as much as anyone’s.  If you’re typical of someone with chronic dis-ease, you tend to push yourself past your point of no return.  Now you have to learn where your limit is and make wise choices around it.

Rose:  Sometimes you are hurting, your whole body aches and you just want to curl up and stay there all day; but you get upset with yourself because you haven’t accomplished something that day.  This causes depression or mental harm to you.  But if you put pressure on yourself to get up and perform you over do it physically and harm you body.

Far too often we let others decide what is best for us instead of listening to our inner voice. We can do a lot of damage before we wise up.  Once we do start making good choices, we must ask our support team to respect them rather than undermine them.

Lily:  People think they’re doing a good thing when they encourage you not to quit.  Often it has harmful effects instead.  They need to realize you’re an adult and making the best choice for you.  I skipped a curling team for years.  At a certain point I knew I could no longer do a good job of it and I said I was stepping down.  But so many in the community refused to accept that answer.  They coaxed me into doing it again.  Of course I was right.  My body wasn’t capable of delivering the rock with the speed and accuracy of before.  By allowing them to influence my decision I had to face my limitations.  If I had just quit, as I planned, I would have been left with the hope that I could still do it on my good days.

I had always been an over-achiever, Type A personality and blamed my need to constantly achieve on the influence of my Type A sisters and parents.  Even my husband expected me to produce the best, the most the fastest.  I forced myself to do this for many years, hating every minute of it, but unable to see that it was me, not my sisters, not my parents or husband making the choice. Around the time I turned 45 I started listening to my body’s demand for quiet time and solitude. A wise friend helped me to see that they are a NEED, like air to breathe, rather than a WANT, the indulgence of a lazy person.  While I forced myself to constantly “Go” and “Do” I did irreparable harm to my body.  But that mistake taught me an important lesson.  Now I “stay” and “be”, existing in the moment and listening to the needs of my body, mind and spirit.

It takes a strong person to understand and set limits for herself/himself.  If you’re suffering dis-ease you have a head start.  You are already in the process of being “refined to gold” and have discovered strength in yourself you couldn’t imagine having before your diagnosis.  Use your strength to protect yourself.  Set limits around how much you can do for your community, family and at work.  Negotiate time for yourself to rest and exercise.  Make wise choices around when, where and how to socialize.  Learn to say no to people you respect at work and people you love at home.  It is hard, but it is imperative if you want to safeguard your health and return to wholeness.

Carrie:  I ask my friends to phone ahead and tell them I am not into drop-in visits.

Sylvia:  I protect myself now.  For instance I used to go to my husband’s Christmas party at work because I knew it made him feel good.  But there were so many smokers it really affected my lungs and I’d be in pain for days after, so now I say “No”.  If we’re supposed to go on a holiday and I know it’s not going to work for me I will stay home at the last minute and my husband and son will go without me. I no longer feel I am letting them down, because if I push myself to go, I know the damage I do to me is just as upsetting to them as not having my company will be.

c)      Ask them to distract you

People who suffer chronic pain learn over time many ways to cope with it.  One of the easiest and earliest learned techniques is distraction.  Ask others to talk to you to take your mind off your pain.  You may want to hide in television, videos, music, games or food.  Others can help by providing you with CD’s, tapes, and videos, playing games with you or sharing a TV show and your couch. Any thing that takes your mind off of pain for even a millisecond becomes as valuable as a magician’s newest trick.

Humor is probably cited as the best distraction of all.  There is no situation I can think of that isn’t improved by adding humor to it.  In a speech she presented, Susan Hall, whose business card describes her as a professional volunteer, ends with this:  “I choose to laugh and be grateful for everything I have … including my disease.  It’s my life and I’ll laugh if I want to.”  I think she describes what the majority of you feel.  Anyone who cares for you becomes your accomplice in the search for giggles, guffaws, belly roars and back slapping, stomach hugging, rolling around of the ground hysterical appreciation of “funny”.   Ask them to drive you to the library for a fresh supply, or bring in the paper so you can read the comics.  They will be delighted to help you bring more laughter into your life.

Carrie:  About five years ago I had MS regression and lost the ability to walk for a time.  My husband was carrying me down the hall to the bathtub.  I got a fit of the giggles and it spread to him.  Soon we were laughing so hard he was weak.  He couldn’t stand up and leaned against the wall, holding me and laughing.  He sort of slowly slid down the wall, laughing all the time and saying, “I’m sorry, I’m sorry”.  We didn’t even know what we were laughing about.  There he sat on the floor with me in his lap and we were both shaking with hilarity.  Laughter is a release valve for what we are going through.

d)     Ask them to touch you

Touch is what I call the saving grace.  When you are lost in the pain, weakened to the point of certainty that this time it is going to win, a touch reminds you you’re not alone.  When tears ride the surface of each breath touch calms you.  When thoughts of death tiptoe forth from the shadowed corners of your mind to tempt you, touch brings you the clarity of light.  Touch is a savior to those in pain.

“This pain will never kill me it will just leave me to suffer.”  Sylvia

One of my favorite things someone could do for me when I was in hospital or convalescing at home was to rub my feet.  In honesty, I’ll take a foot rub over sex most days.  One of the best laughs I ever had when I was ill, was when my little six-year-old daughter asked what she could do to make me feel better.  I was home after a five month stint in the hospital, and faced weeks more in my bed.  So I thought I’d give it a chance, and said, “Honey, I’d love it if you’d rub my feet.”  She thought this pretty peculiar – not being interested in anything but tickles herself, but earnestly she found the lotion and squeezed it into her tiny hand, while her teeth almost bisected her tongue.  Then she climbed onto the bed and lay on her stomach looking at the bottom of my feet.  She was small and almost disappeared behind my ‘pointing to the ceiling’ toes, and the pillows that elevated my legs.  Suddenly, a slippery little finger poked out from between two of my toes, coming toward me fast.  It looked so ludicrous, felt so wet and out of place that it started me laughing.  My daughter forgot about the foot rub in her eagerness to launch herself on Mommy and join in the fun.  We laughed ourselves into limp fishlike forms, then laughed some more.  What therapy!

But I truly learned the value of touch and foot rubs when a neighbor of mine visited me in hospital.  I could tell my depleted shriveled body and all the tubes where causing her empathetic pain.  She wanted so badly to do something to help me.  She asked, hesitatingly, “would it bother you if I rubbed your feet?”  You know the answer to that!  My spindly legs found the energy to get themselves on top of the blankets fast.   We visited, catching up on the neighborhood news, while all the time her gifted hands worked magic on my feet and turned me into a pliant blob.  I was so appreciative, expressing my thanks then and after, that it gave her the idea for a ministry.  Shortly after she told me that she had arranged with one of the hospitals in our city to go in two afternoons a week and give foot rubs to the patients that wanted them.  I know firsthand the pleasure her touch brought them.

When resources permit, I visit Lynne Thompson, a trained Reflexologist.  This is great therapy for me.  Not only do I have my feet rubbed by an expert, but other parts of my body are being healed at the same time.  I have noticeable reduction in my symptoms when I am able to afford reflexology on a regular basis such as 45 minutes every three days.

Here again if you want your team to help you handle pain it is important that they know your likes and dislikes.  You’ll hardly distract an academic by having a bubble-blowing contest or a child by reading a doctoral thesis.

4.      How do I manage my pain?

Carrie:  I guess I feel that I handle it well enough that it doesn’t totally debilitate me.  As long as I’m functioning, I don’t think I can ask for more.  At times it is almost beyond my control – but no.  I can get past it.  When I was in the hospital this last time it was because I could not get past it, and since them I have learned coping mechanisms.  I had become debilitated by pain to the point that I could not function and take care of myself in my own home.  I was depressed because of the amount of pain wearing me down.

a)     Clinical Therapy

I had been referred to a pain specialist at the MGH Pain Clinic.  She prescribed medication, which completely eliminated the burning, neuropathic pain I was experiencing.  This was a tremendous relief and I would urge any patients suffering from pain to consult a pain specialist as I did.  The medication prescribed for pain also had a positive effect on the quality of my sleep and improved my mood as well.[1]

I too, was referred to a Clinical Psychologist recently for treatment of intensive prolonged pain.  Of course with the over-burdened health system it was months before they could take me.  When they phoned to arrange an appointment I said I had managed my pain on my own and was now much better.  I didn’t feel I should take up a specialist’s time when someone else was in intense pain at the moment and needed their help.  I was told that is not the way the system worked.  If I didn’t take the appointment it wouldn’t go to someone in immediate pain, but to the next person on the waiting list.  I was advised to work with the specialist now and use the technique when my pain resumed.

I then had ten sessions with intern, Natalie Frenz, in the Clinical Psychology Department of Health Sciences Centre in Winnipeg.  She did me enormous good.  I revisited some techniques I had let slip as I returned to good health, and she taught me some new attitudes and perceptions around dealing with my pain.  I was expected to do homework that helped me to measure my pain over a period of weeks, review my coping techniques and form new habits that would help me.  I was taught the Gate method for controlling pain, worked on relaxation exercises and received many helpful tips around dealing with my pain.  I use them most effectively now.  I strongly recommend that you ask your doctor for a referral to a Clinical Pain Therapist.  Or, if you are watching a loved one in pain, who is not dealing with his pain productively, urge him to seek help from a specialist.  It changed my life for the better.

b)     The Gate Method of Pain Control 

In 1965 Ronald Melzack , a McGill University psychology professor, and Patrick Wall, a British physiologist published their influential “gate-control” theory of pain.  They believed that instead of a single pain centre, many parts of the brain were involved in processing our pain signals.  Melzack further theorized that we have a centre in the brain that is influenced by sensory input and inheritance.  This neuromatrix generates the feeling of pain that we think is coming from the body.  Melzack emphasized that this does not mean suffering is imaginary.  “In a lifetime of research, I can count on the fingers of one hand the number of people I’ve met who faked it [pain] for one reason or another,” he concluded.

“I measure my pain by the amount it prevents me from functioning.” Phillipa

The Gate Control Model I learned to use effectively was designed by John Wiley and sons and was taught to me at the Clinical Psychology Department Health Sciences Centre in Winnipeg.  Pain travels from peripheral fibers throughout our body, to pain fibers, to the Gating mechanism at the base of the skull, to transmission cells and then to the brain.  When we have our Gate open the pain feels worse.  There are physical, emotional and mental triggers that open the Gate.

  • Physical triggers include:  the extent of the injury, the degenerative change, the extent of residual scarring, the amount of muscle tension.
  • Emotional triggers can be: anxiety, worry, tension, anger or depression.
  • Mental triggers depend upon:  your degree of focus on the pain,  your level of boredom, your beliefs and attitudes about pain, or your lack of control over pain.

When we have the Gate closed we feel better.  We can close our Gate by:

  • Physical: drugs/counterstimulation/surgery/reduced muscular tension and arousal
  • Emotional:  relaxation and calmness/reduced anger/reduced depression
  • Mental:  distraction/external focus of attention/attitude of active coping

How can you apply the Gate exercise to alleviating your pain?  It works like this.  Imagine your pain fibers are registering a pain of +6 on a scale of 1-10 (10 being the most pain).  Physically you tighten your body adding +1 to your pain.  Then you mentally focus on the pain which adds +2 to your pain level.  You are now at a pain level of +9.

If instead you recognized your pain level of +6 and do something physical to alleviate it like use a heating pad or take a pain killer, you possibly reduce it by -1.  Then if you distract yourself (mental) or work at being calm (emotional) you might reduce it by -2.   Now you are experiencing pain in the region of +3 instead of +9.  What a difference!  And you make the choice which level of pain you have.

Sylvia told me that one of the best things she had done to reduce her pain was to find a multi position bed she could afford by phoning hospitals and finding one that was replacing some beds and willing to sell her a used one for a few dollars.  Sylvia came up with this creative solution by listening to her body and identifying what was causing her more pain – the bed she slept in.

c)      Deep Breathing

I do Smart Women[2] workshops on The Whole You – Body, Mind and Spirit  or Taking Care of You – Job #1 across Canada.  Of all the tools I hand on I most like to share the technique for deep-breathing. This coping device is totally under your control.  You can do it anytime, anywhere and experience immediate relief (to differing degrees according to your condition).

In order to breathe correctly, sit or stand tall.  Roll your shoulders back and down.  Feel your chest open up.  With head straight, chin level, think of yourself as an elegant water vessel, tall, slim and wider at the top than the bottom.  Great, you’re looking good.  Now think of filling that stately vessel with water.  It flows first into the bottom of the vessel and then rises to the narrow neck.  When you deep breathe correctly, the air becomes the water, your body the vessel, your lower diaphragm the bottom and your throat the neck.

Deep Breathing should be done to a count that stays regular.  Try breathing in to the count of four, hold for two, and breathe out to the count of four.  As you breathe in think of bringing pure air into your body, and breathing out the bad air (the impurities).  These days of high pollution levels you need a good imagination for this part.  Focusing on your count, deep-breathe for 5-10 minutes 2-3 times a day.  At first you might have to stop after just a few minutes because you feel dizzy.  You may be hyperventilating.  Keep a record of the amount of time you do your deep breathing daily and see if you can increase that time over a few weeks.

As well as reducing pain by acting as both a distraction (the focus on counting) and a relaxation device, deep breathing has many other benefits.  By oxygenating your body you increase your energy level and speed up your reflexes.  By feeding oxygen to your brain you raise your level of concentration and creativity.  And by feeding your spirit you lighten your outlook on life.  When all three parts are in play, you experience a higher level of well-being that augments your ability to cope with pain.

d)     Relaxation Exercises

The first thing that pain triggers in your body is a tightening response of the muscles in the area of the pain.  This has the effect of increasing the pain and drawing a greater amount of your attention to it.  As the amount of pain, and your focus on it increases you may become upset, angry, frustrated and anxious.  These emotions then correspondingly elevate the level of tension in certain muscles.  You are now caught in a viscous cycle.  Muscle tension increases pain and pain increases muscle tension.  The use of relaxation exercises is the best technique you can apply to this cycle.

It is necessary for you to develop the skill to relax at will.  This is no different or harder than learning to bake bread or change the oil on a car. It does, however, require regular and consistent usage over a series of weeks or months to add it to your repertoire of coping techniques.  Practice on a once a day basis allows you to become aware of the specific needs of your body – to identify the pain and localize the muscles reacting to it. The quickest relaxation exercise, once you are skilled, is to focus on relaxing that muscle group at the same time as you deep breathe.

Maxine:  Last night I was lying in bed and my stoma was killing me. I t felt like someone was pouring lemon juice on an  open cut.  When distracting myself through prayer and then visualization didn’t help, I started my deep breathing.  I should have done that first.  I focused directly on the pain and the source of the pain, and all the tension that was building in my body parts.  Every time I exhaled there was a span of time when the pain receded.  When I increased that span I gained a longer space of pain free time.  My muscles began to relax as I focused on my breathing, instead of my emotional response.

A more highly developed relaxation exercise is combining your deep breathing with a pattern of clenching or unclenching your muscle groups.  This is best done lying on your back in a comfortable position, with legs slightly apart and feet falling loosely outward.  Your hands angle away from your body, palms up. [You are lying in the Corpse Position for Hatha Yoga.]  Stretching out in a comfortable recliner will also work if you are no longer able to make it to the floor, or try lying on your back in a bed.  Push your chin down to your chest. This stimulates the Thyroid and Pituitary gland and helps you to produce Seraphim that eases the pain and Endorphins that give you a sense of well-being.  With your eyes closed roll your eyeballs forward as if you were looking at your chest.  Studies show that this causes a change in the pattern of your brain waves that results in increased relaxation.  Now begin your deep breathing and starting at your feet and working upward deliberately tense then relax each muscle group in your body.  Time your breathing to the squeeze and loosen pattern of the exercise.  Use the same count for each muscle group.  If one area holds more tension than another does, simply repeat more times without changing the length of time you tense those particular muscles.

Sylvia:  When my pain is getting worse I can feel myself getting tighter and tighter.  My body feels like an elastic band stretched to the limit and about to break.  I focus on relaxing my muscles instead of the pain, just making them softer.  I figured out a while back that this makes me hurt less.

There are many variations of relaxation exercises.  Each person creates his/her own pattern and style.  I have done it in a lounger with a Pain Specialist leading me through the exercise.  There are tapes available that will offer you this same experience.  You can learn Relaxation exercises by taking a Yoga class or working with a Clinical Pain Therapist.

This can often be a ‘quick fix’ solution to your pain, if you catch it in the early stages.  But regardless of the level of your pain, if you use a Relaxation exercise you will feel better.  Choosing when to use it is up to you.  I find it particularly helpful if I am having an anxiety attack in the middle of the night and my entire body is tense.  Some people like to start their day with a relaxation exercise using it as a preventative technique, and some call it up on demand, knowing they have developed the skill to the point where they can trigger the relaxation response in a matter of minutes.

Jocelyn:  When my pain becomes bad at work, I know I can’t leave.  I pay attention and when I feel it becoming insistent I try to get a few minutes alone.  Usually I can do a mini relaxation exercise right in my desk chair, focusing on just the area that is hurting.

e)     Visualization

Visualization is the ability to build a picture in your mind.  This exercise takes so much focus that it is a form of distraction from pain.  Used together with deep breathing it can produce a calming effect.  I have found it the best tool for dealing with short-term pain combined with anxiety.  For example: Use this method when you are anxiously waiting to see a specialist, undergoing an uncomfortable test or treatment, caught in a situation of standing too long in a grocery line or waiting too long in a doctor’s office.  All of these things have in common the need for patience and the need for distraction.

Think of something sensory that you love.  The first example of visualization I ever read about was used effectively by a woman who had been terribly damaged in a car accident.  In moments of anxious waiting or pain she would envision a rose slowly opening its petals.  She would imagine everything from the blushing color, the prick of the thorn, the scent, the feel of the silken petals against her cheek and the tiny dewdrop winking up at her.  While she opened the rose petal by petal in her mind she was unable to think about her pain or her fear.

My favorite is imagining a golden light shimmering around my body.  The light protects my body from further harm or pain.  Inside the gold outline, I imagine white light spreading through my body as I focus on the area of pain and relax it.  The brighter the light, the more relaxed my body becomes and the less I feel the pain.  I am actually drawing on the energy force that is in all living things.  If you have a good imagination and hone this skill, you not only defeat pain and anxiety, you actually head out on virtual adventures.  Those hours alone begin to pass more quickly.

f)     Meditation

Meditation encompasses the whole you – body, mind and spirit.  It combines deep breathing, relaxation exercise, distraction and visualization to give us a beautiful and restful experience.  This may be a technique you choose to share with other members of your family, creating a haven in which to find peace in the present and produce harmony for later.

  • Focused Meditation

Focus on some object, a candle flame, wind chime, flower – whatever draws your attention.  It is the first stage in hypnosis, using the same principle of focusing on an object while being persuaded to relax.  Although a specialist usually does Hypnosis, you can develop the ability to hypnotize yourself.  By focusing so fixedly on an object that you shut out all other sensory stimulation, and by repeating a message to yourself, such as “Peace, Peace,” you can cut yourself off from the pain.  Yoga practisioners use a Mantra or repeated sound often a deep humming noise that focuses the breath and centers the person meditating.

  • Centered Meditation

This is an advanced stage of focused meditation.  It requires a great deal of practice and concentration.  Instead of filling your mind with an image like the candle flame and focusing totally on it and the mantra you repeat, you attempt to empty your mind completely.  This method of relaxation is considered highly therapeutic in the Far East, and according to some Hindu cults, it is the highest form of meditation.  It is now being practiced throughout North America.  By completely emptying your mind of all thought, all focus, you leave it open to being filled by the ultimate truths (from God, a universal energy, or whatever source you believe in).  You can see that you would gain the ability to empty all messages of pain – to remove yourself from the pain.  This technique is well worth the years of practice it takes to master it.  And face it, most chronically dis-eased have the time to invest.

  • Guided Meditation

Guided meditation is a take-off on Visualization.  Here though, someone else is building the picture in your mind.  Often it is done in a group, or one on one with a therapist.  There are excellent meditation tapes and CD’s on the market that you can listen to at home or in your office during a scheduled rest period.  This type of meditation is best done over a longer period of 20 to 30 minutes.  By visualizing yourself in a beautiful setting and doing the things that bring strength, comfort, stimulation and hope into your life you feed yourself positive messages.  These become like psychosomatic candy, a treat, that increases the well-being of your body, lightens your spirit and stimulates your mind.  It is one of my favorite forms of coping with pain.  I am including one of my short meditations for your use.  If you like it then I suggest you read it into a tape recorder or have someone, whose voice you respond to, tape it for you.  Enjoy!

Guided Meditation

Make yourself comfortable. Lie on your back and support your legs with a cushion or towel under your knees to prevent back strain, or curl into the fetal position on your side if you have a back injury.  If you are on your back your chin should be slightly elevated, your eyes closed and focused down toward your chest.  Your feet are falling loosely to the sides, your hands should be at 30 degree angles with your body, palms up, fingers relaxed. Take a deep cleansing breath.  To the count of 4 breath in through your nose good air, pause, to the count of 4 breath out through your nose bad air.  You are a clay vessel you must fill with water.  The water comes in and fills the bottom of the vessel first, then the middle and finally the neck.  It empties from the top down.  Breathe in the good – fill yourself, breath out the bad air – empty yourself.  Consciously relax your body and continue to breathe to your count.

Imagine yourself in a small cabin in the midst of a luxurious forest.  You step to the door and breathe in.  The air smells fresh, clean like it has just been washed.  The rising sun strokes a finger of gold across your cheek and you lean into its welcome.  Anticipation bubbles inside of you, for today you are going to climb the mountain to visit a dear friend.  You know who that friend is.  Imagine your friend in your mind – mentor, counselor, most wise and most loving – full of compassion.  [PAUSE] 

Because you are eager to come into this presence you rush back into your cabin and toss a bright red apple on top of the things in your backpack, then carefully you place a parchment scroll where it will not be bent.  You shrug into the pack and step out onto the path with great energy. 

The morning sings to you and your spirit responds, rising high like the drifting butterflies that dance ahead of you on the path, soaring like the birds that dart from tree to tree.  The forest is alive with the chatter of a squirrel, the call of a magpie.  A rabbit waits at the curve of the path, then darts ahead of you as if leading the way.  You climb steadily in the shade of pine, aspen, fir and poplar, birch and willow all sighing together in a light breeze.  At noon you come to a clearing in the woods.  A pool has formed in it, fed by a gurgling brook.  The water sparkles and swirls in a complex dance as it finds its way over moss-gowned stones.  As you draw closer it changes a beach of pebbles into sparkling gems.  You shrug off your pack and rest upon a smooth boulder at the water’s edge.  You peel off your shoes and socks and rest your feet in its coolness, smiling as tiny bubbles rise to tickle your soles.  You crunch your apple, letting the juices run down your face in perfect freedom and licking them away with relish.  The sweet tartness stays on your tongue as you lie back and blissfully soak up the sun.  You dose and breathe deeply in time with your heartbeat.[PAUSE] 

But soon a passionate duet between two larks awakes you and you pull on socks, shoes and backpack as you listen.  You turn your face upward to where you know another cabin perches on the side of the great mountain and you begin to climb with new energy.  The trees thin, and more rock appears.  You hear the crunch of crushed stone beneath your boots, you smell the dust hanging in the air.  You are climbing steadily now, and you feel your heart racing and hear your rapid breathing and don’t know if it is because of the exercise or your growing excitement to see your friend.  Your fingers rasp across rough stone as you lever yourself higher, noticing the tiny seedlings thrusting upward from the unforgiving rock.  They are as fragile as your dreams, but you have seen other seedlings grow to mighty trees.  You believe anything is possible if you have the strength to endure and the conviction that what you want is worth enduring – like this climb, which has become more difficult.  Your whole body begins to ache and quiver with strain, but your smile is more generous, your heart is lighter because you are almost there. 

You pull yourself over a ledge and see the small cabin.  Your friend is watching for you in the open doorway.  No longer aware of your tired body, you race toward the first warm embrace, feeling safety, security, comfort, strength and unconditional love.  You step inside the cabin together and sit at a polished table covered with a cloth that looks like the sun was woven through a field of violets.  There is a picture of lemonade beaded with condensation.  Your tastebuds leap with anticipation.  There are thick wedges of shortbread that melt in your mouth and small scones loaded with cream and oozing strawberry jam.   Each mouthful is a pleasure you enjoy in total peace as your friend’s smile radiates from across the table. 

When you are replete you reach into your backpack and lift out the scroll.  You place it in front of your friend feeling a deep certainty in the words you have written there.  You want to share this conviction, this new step in your life with your friend.  You hold your breath as the friend pulls off the leather thong binding it and unrolls it.  The parchment is bright white, the black letters stand out in sharp relief.  They are the words that express your [goals for the months ahead].  You see them written in your mind and say them silently as your friend reads.  [PAUSE] You watch your friend’s face and see the deep pleasure, the perfect understanding, and total acceptance of what you plan to do.  You know you are strong enough to do it alone, that you don’t need approval of the goals you have set, but it brings you great peace to have them validated by this presence whom you respect, love and honor. 

The sun has moved into the west window of the cabin forming a brilliant nimbus around your friend’s head.  You sit a moment longer soaking in the love and the approval of your dear companion; then you rise to begin your journey home.  You know the trip down the mountain will go much faster, and you are excited because in climbing it you have taken the first step toward reaching your new goal.  But there are many other actions to take now, and they are crowding into your mind, stimulating your imagination and fueling your energy.  You know your dear friend will be there whenever you need affirmation, comfort and strength.  You know your dear friend is inside of you, a part of the love you give yourself and others.  You know with great clarity that you can make this happen if you commit to it and continue to take action. 

And now it is time to rise and take action.  In your own time, open your eyes and lie quietly reacquainting yourself with your surroundings.  Slowly turn onto your side and curl your legs, pushing up onto your elbow and then to a sitting position.  Do it in your own time.  Then take a few deep breaths to oxygenate your body before moving to a standing position. (end)

g)     Distraction

If you are blessed, you have people in your lives who help to distract us.  Being able to count on them for laughter, an interesting conversation or even a heated debate is a comfort to you.  However, much of the time you are chronically ill you will be alone and must learn to distract yourself.

Distraction is so much a part of our cultural message that we do it for ourselves automatically.  We distract ourselves through sensory stimuli.  An anxious person may gorge on good tasting food, an angry person might thump a drum or dance up a storm.  Many people distract themselves with audio and visual stimuli.

Sylvia:  I have terrible pain in my back and chest.  I use a heating pad to distract myself from it. I put it on so hot that I have permanent marks on my back.  I go through three hot pads a year.

While Sylvia uses intense heat to distract herself from the pain, the opposite happened to me.  I allowed an interesting conversation to distract me from the pain of a hot coffee mug I was resting on my thigh.  I too have a permanent mark.  I do not recommend this form of distraction to anyone.  Frankly, it hurts.  There are much kinder, gentler ways to distract yourself.  Turn into a video junkie (on a temporary basis), or focus on a book, prayer or game.

Carrie:  I will tune into something like a ticking clock and that will help [distract me from my pain].

Booster Box

Buy a birdfeeder and hang it outside the window you look through the greatest part of the day.  You can use binoculars to get close-ups of bird spats and to check their coloring.  The entertainment provided by the birds is a nice pain distraction.  Sylvia

h)     Positive Self Talk 

The psychobiological loop is a feedback loop between the mind and the body where thoughts and feelings create a specific pattern of muscle use, which in turn reinforces the thoughts and feelings and thus a particular set of related physical, mental and emotional reactions is perpetuated.  In other words, being aware of the mind/body connection can greatly increase your chances of wellbeing.[3]

This is a tool that is all about attitude and making choices.

“I don’t want to sound like Pollyanna, but that is exactly what it is.”  Carrie

 We can choose how we are going to feel about having pain and what we are going to do about it.  Positive self talk works on the mental part of the Gate Method helping us close the gate against pain.  I talk to my pain.  I say things like,  “I’m comfortable with you, I’m at ease with you, I feel you leaving.  I am not going to feel the pain.”  You too can feed yourself effective positive messages.

i)       Physiotherapy

This is most often done as a consequence of a doctor’s referral.  Physiotherapists are trained specialists who understand the skeletal and musculature design of the body, and how one affects the other.  They use massage, heat and cold, exercise, and many new forms of technology, such as TENS (transcutaneous electrical nerve stimulation) machines, to alleviate pain by blocking or diverting it where it originates at the nerve.  Physiotherapy is done over time, often months or years.  It is not a quick fix.  It is an effective way to alleviate pain caused by inflammation.  Because the cost of Physiotherapy is covered by the Health Care System it is often difficult to access.  If the demand is too great for the number of physiotherapists available, you may have to wait too long between appointments and lose the benefit of regular treatment.  It is possible to pay for private treatment but the costs are high, and few of us can sustain them over time.

j)       Massage Therapy

This form of massage and treatment is accessed through private clinics.  It provides a great deal of pain relief.  Again, trained professionals who understand the workings of your body do it.  If you are going to a massage therapist make sure they are fully aware of your health problems.  They should ask you to fill out a health profile on your first appointment and keep it as confidential as any other medical professional.

k)     Exercise

There are two types of responses when the chronically ill decide how they will use exercise to handle their pain.  Psychological terms for these types are “Avoider” and “Overactive”.

A common thing that happens when people diagnosed with a chronic disease begin to suffer pain is that they pull back to protect themselves from pain – Avoid it.  They may stop all forms of exercise and take to their bed.  They believe this avoidance pattern will keep the pain from escalating.

Sometimes this is an early treatment recommendation from your physician who advises you to “wait and see” if, when an injury is healed, the pain will disappear.  But in chronic disease the patient is not healed completely and the pain may not go away.  Damage occurs when avoidance goes on long term.  It will result in poorer fitness caused by lack of circulation, stiffening joints and weaker muscles.  It may also lead to depression and frustration caused because you are now unable to do the things you love.

The Overactive heads off in the opposite direction.  They are determined that the pain and the disease will not beat them, and push themselves unrelentingly through physical activities.  They become even more active than they were in the past, increasing their exercise load until they are stopped by excessive amounts of pain.  It then takes them a longer period to recuperate and begin activities again.  They do much better when they introduce balance to their exercise regime.   If you’re an Overachiever you may not be aware that you are doing too much – you are using exercise as an avoidance technique.  It takes an observer to recognize what is happening – someone like a mom.

Lynne:  The most frightening time for me was when my daughter was exercising.   I would visit her and I would go with her to her classes.  I’m in good shape, and I couldn’t keep up with what she was doing.  And she was so thin, so obsessed with exercise.  I worried because she didn’t have an extra ounce of fat on her body, and fat cells allow you something to draw on if you’re not eating enough.

It is important at the onset of a chronic condition to become informed as to the amount of pain you can expect, and the best way to treat it.  Diseases that inflame the soft tissue or joints can produce high levels of constant pain.  It is necessary for you to find a balance between too much exercise that further inflames the tissue and too little that allows the tissue to tighten and hurt worse.  Daily exercise to keep that balance is highly recommended by the medical profession.

One of the safest exercises is swimming.  This helps to reduce overworking your joints because the water carries much of your weight.  If you are able to find a warm pool year round the heat also is therapeutic.  Being cushioned by warm water, as you work your joints and muscles to keep them flexible, is a soothing way to alleviate some pain.

Walking is another easy to access, easy to control exercise.  You choose when, where and how long.  This feeling of control gives you an extra sense of safety and encourages you to exercise more frequently.  Most studies on exercise say that walking 20 minutes three times a week will add to our state of well being.  If we walk 40 minutes three times a week, fast enough to break a sweat, we will lose weight, as well.

Often the cause of pain is outside your control.  You may be doing everything right and suddenly pain, like an annoying relative, comes for a visit and refuses to leave.  Anyone suffering from inflammation of tissue or joints will tell you they are affected by changes in the barometric pressure.  Most tell you too much heat or cold will also affect them.

Carrie:  We took our old van on a holiday.  The weather was really hot and we didn’t have air-conditioning.  I can’t function in the heat.  We had to turn back and cut the holiday short.

l)       Drugs

“Medications are generally very effective in short-term use of acute pain, but unfortunately they have been found to lose their effectiveness and become of questionable value in the management of chronic persistent pain.  Paradoxically, as the effectiveness to reduce the pain decreases, the side effects increase, as do the physiological psychological dependencies of the user.  When the effectiveness of the medication decreases and the side effects become annoying or uncomfortable, it is time for the physician and patient to re-evaluate the situation and perhaps find alternative methods to manage chronic pain.”[4]

  • What 

Drugs for the treatment of pain are generally divided into three categories:

1)   Peripherally acting analgesics (Aspirin)

2)   Centrally acting analgesics (narcotics)

3)   Adjuvant analgesics (barbiturates, anti-depressants, tranquilizers, anxiolytics, and muscle relaxants)

Sylvia:  Most people have never known me not on narcotics.  I go off of some every few weeks because I want them to continue to be productive.  I know I am going to have a bad week when I go off narcotics, so I plan it. I pick a week when I know I haven’t anything major on that I don’t want to miss.

  • When

It is important to know your body well enough that you can recognize the signals.  Pain has its uses.  It can’t just be designated an evil thing when it is actually our early warning signal that something is wrong in our body.  Pain becomes intolerable when we avoid those early warning signals.

Carrie:  I know when I need to take something so it doesn’t get away on me.  I will sometimes get up and try to walk to help alleviate the pain, but with my legs are so weak I can only walk so long and then I’m beat if the pain hasn’t gone.  Then I know it is time to resort to medication.

Holding back on your medication out of fear causes new problems.  Pain control is more powerful if medication is taken on a regular basis rather than  “Just when I can’t stand it a moment longer”.  By holding back you use the drug only when the pain is at the highest level and actually increase your pain by raising your emotional response to it.  You experience anxiety and panic, and an increased focus on the pain opening The GATE wider.  By taking it on a regular basis, particularly for chronic pain sufferers, usage is determined by the clock rather than your level of pain.  When you have an even dosage of narcotic or analgesic in your system throughout the day, it lessons the chance of the pain getting out of control.  There is a theory that when pain relief clearly comes from ingestion of the pill that we are physically and psychologically more dependent on the drug.

I’m extremely drug sensitive.  There are very few chemical drugs I can tolerate. I tried to ration their use so that I would not build up a resistance to them and have nothing left to help me.  I refused to take anything until the pain was so excruciating for so long that I could no longer hold out. Then I would down an extra strength Tylenol  (all I could tolerate) and expect it to kill the pain.  Of course it couldn’t do a job that big.  Now I have learned to toss that pill in shortly after the pain begins.  I catch it early and stop it before it grows intolerable.

  • How much

Far too many people have become dependent on narcotics during years of dealing with the pain of chronic disease. It is a frightening fact, and one that many of us are so aware of that we actually let our fear of dependency keep us from using something that will make our lives more tolerable.

Many, many times I was given too high a dosage of medication.  I would tell them I was extremely drug sensitive and ask them to start me on a quarter of what a normal person took.  They wouldn’t believe me and give me a normal dosage.  I was overdosed on Demerol, morphine, codeine, antibiotics, steroids, antidepressants and hormone therapy.  Each time there were dreadful side-effects and I paid the piper for their refusal to believe I knew my own body best.

Sylvia:  I have a friend who uses Gravol for a sleeping pill.  I take Gravol with every pill I take.  I can take two narcotics and literally go shopping.  I get a shot of Demerol at the hospital and go to the mall.

Are you get caught in a never-ending cycle of symptom, drug, side-effects, narcotics to deal with the pain of symptoms and side-effects, more side-effects from the narcotics and on and on?

Sylvia:  I go off of a narcotic when the dose is no longer helping me.  If it’s not doing anything for me why swallow it?  If the pain gets too bad before I can get back on it, I try something else like maybe Morphine.  But it makes me sick and I vomit and vomit. But it’s better than the pain and using up the ability to deal with the pain later.

Sylvia found if she threw away any unused pills the doctor is not currently prescribing she could not be tempted to take them along with her current medication when she was in a lot of pain and desperate enough to make poor choices.  This might be an effective way to add safety to your medication schedule. 

  • side-effects

Although narcotics might alleviate some of your pain, they can cause a whole new set of problems.  It is important to understand the side effects of the drugs you are on (ask your pharmacist for a list of side effects for each drug your doctors prescribe).

Many Doctors don’t tell you the symptoms of a drug because they think you might psychologically manifest them.  I would rather be informed of what the possible side effects and consequences could be so that I can recognize what is happening if I get a side effect.

Being left uninformed causes extra worry and confusion and can sometimes be dangerous if you don’t pick up on a side effect early.  But, a list of side effects is no help, unless you really pay attention to your body and register what the drugs do to you.  Each of us reacts differently to a drug and a combination of drugs.

Sylvia:  I am hospitalized four to five times a year from a few months to a couple of weeks.  An awful lot of these stays are drug related, from trying to get established on drugs or having reactions and having to be treated for them.  I often don’t know if drugs for the Lupus, or drugs for the pain cause them.  I remember last year on my birthday I told my doctor I had this spastic thing in my leg.  He gave me something for it.  I went home on a day pass and I just kept getting worse.  I said, “I hate to go back after one hour out, but I’m in trouble.”  I remember as I walked out the door I saw my pills and remembered I hadn’t been taking them.  But by that time the condition had moved to my head and I couldn’t swallow the pills my throat was so tight.  My husband called ahead and had a doctor ready and by the time I got into the hospital they were calling Code Blue and getting a team together.  The doctor consulted with a neurosurgeon in another city to see what they could do. They tell me I had a reaction to the anti-nausea drug my doctor prescribed. 

I remember one time I was suffering so much pain and feeling hyper and jagged and having major anxiety attacks.  My doctor told me it is the way I manifest depression and she put me on an antidepressant.   I turned into a zombie.  I couldn’t think, barely moved and was in such a trance like state life had no meaning.  I remember my husband and I flew our plane to Calgary for a visit.  I barely knew when we took off or touched down.  When I got to my sisters house I said “I can’t stand not being part of the world.”  I went off the drug immediately which was the wrong thing to do.  I had been instructed to phase myself off of it. You and those around you must be aware that when you are on drugs you are often not your “normal” self.

Sylvia:  If I’m on enough of the narcotics, I honestly don’t feel like I can make a decision or function.  I will be lying on the bed thinking “How did I manage to organize that event last month.  Something will go round and round in my head for days and then it will occur to me that I have a husband I can talk to about it.  I have a mother, Lupus friends but I don’t think to go looking for help.  It’s difficult for me to focus, thoughts are scattered.  Half a thought jumps into my mind and before it’s finished another is there. Then again, when I’m on  Salumedral, Cortisone or high dosages of steroids I’m wired, trembling, visibly jittery, hyper.  I can go for days without any sleep and not feel fatigue.  It’s a false sense of well being because I can clean all my cupboards, wash floors, do all the things that while I was confined to my chair I couldn’t do.  It’s very high energy. 

  • fear of addiction

When I was in the hospital for my thirteenth surgery, my surgeon asked me to visit with another of his patients.  She was always ten surgeries ahead of me.  She was using one of the newly designed machines for administering her own drugs.  When she left the hospital she took pain cocktails all day long.  I was really frightened that if I took anything for pain I would end up as drug dependant as she was.  I refused almost all pain medicine and suffered a lot more than I had to at the time. 

I imagine you can add to these horror stories on of your own.  While drugs played an important role in alleviating your pain, allowing you to live a fuller life, they may also be a source of great frustration and fear to you.  If you are overly concerned about getting addicted to the drugs you might make poor choices.

Sylvia:  I am so afraid of the side effects of taking one more pill that I will quit cold turkey and then end up in ER.

  • keeping track

Knowing you will be on many drugs concurrently means that you have to come up with a system for keeping track of them.  Pill sorters allow you to see if you have taken the medication that day, but do not help you to remember to take it at the right time.  At first you start out with the times you need to take your pills, but as you get more familiar with how they work for you, you begin focusing not on the time you took the pain killer, but on how long it will last.

Sylvia:  I record when I take my pills each day.  I know one medication takes 45 minutes to kick in and the 24 hour drugs take about 2 hours to begin working.  So I think I took the pills at 3:00 p.m., but I’m not going to get relief until 3:45 p.m. from one and 5:00 p.m. from the other.  With all those numbers in my head I start to think “When did I actually take it?”  “When do I take it next?”  So I have a book by my chair and I jot down the time, the drug and the amount.

Matthew:  Nowadays I adjust my sugar levels through insulin and not diet.  I check my blood sugar levels 4-5 times a day.  Now the equipment is so fast, you have pen cartridges instead of needles. You inject yourself in a second even through your clothes.

m)   Holistic or Alternative methods 

A high percentage of people suffering chronic illness look in the direction of alternative medicine for help.  They have many reasons for doing this, but primarily they are concerned about the harmful effects long-term drug use will have on their bodies.

Some of the alternative method for pain control those interviewed shared with me were Massage Therapy, Raki, Reflexology, Cranial Sacrel work, Acupuncture and Herbal supplements.  To get into the holistic methods would take the word count of another book.  I have chosen not to include them.  However, I feel many have positive benefits and are therapeutically effective.  I recommend that you explore these options in conjunction with finding effective ways to deal with your pain through your medical doctor.

n)     Changing your diet

Dr. Neal Barnard maintains there are certain foods that trigger pain, inflammation, stiffness, diabetes.  Barnard traces the origin of some of our foods like milk, corn, wheat, meat, eggs and caffeine and explains that while as a species we have the ability to adapt to new substances, many individuals do not.  They cause reactions in our bodies that exhibit the previously mentioned symptoms.  Barnard explains that if these foods killed us before we reproduced, only those persons that didn’t react would pass their resistance on to their children.  But we seldom die before we procreate, the long lasting affects of food allergies hit us when we are older, with diseases like Heart disease, Diabetes and arthritis.[5]

If we are good at listening to our body’s messages, we don’t need to read Barnard.  But few patients of chronic disease are in the habit of listening to their bodies.  A typical Type A is too busy doing to be aware of silent signals.  Even if you are Type B or C, our society has not encouraged you to take the time to be still and pay attention to what your body is saying.  Earlier I pointed out that our body tells us if we need extra vitamin C to fight a cold – we suddenly have a thirst for orange juice or a desire for citrus fruit.

A baby, likewise, tells you from day one what it’s body needs or rejects.  But how many adults laugh at the disgusted wrinkle, and ignore the little hands trying to push away the spoon.  You generally get a message when the baby spits her beets all over you, or when you child is projectile vomiting after a glass of milk.  But you clean up the mess without being aware of the underlying problem – your child is sensitive to these foods, at this time.  Your pain is often telling you that you too are allergic to something you are ingesting.

Barnard is convinced that by eliminating some or all of these foods we can considerably improve our health and reduce the amount of pain we experience.  I highly recommend this book as a conservative method for getting your disease and pain under control, before you try more invasive, extreme measures.

Here are a few dietary changes you can experiment with immediately.  According to Dr. Bernard, researchers have a high rate of success in eliminating pain with these changes.

  • If you suffer inflammation, hot joints or arthritis eliminate dairy products and citrus fruits
    • If you suffer angina, blocked arteries, high cholesterol, heart disease eliminate all meat, dairy, fish and eggs – in other words eat a Vegan diet
    • If you want to give your immune system maximum help in restoring dead cells and fighting disease add a high quantity of green veggies, particularly artichokes, asparagus, spinach, broccoli, collards and Swiss char.
    • If you want to give your body the best chance at being pain free and healthy eat a Vegan diet.  That means eliminating everything but grains, fruits and vegetables.  Factor in your specific triggers.

The people of India use Fennel to eliminate pain caused by gas in the intestines.  Dr. Elizabeth Thakkar, Calgary, recommends fennel tea for people suffering Crohns, Colitis and IBS (Irritable Bowel Syndrome).  She says drinking Fennel tea, or eating the seeds following a meal helps to reduce pain.

In more recent years, studies have indicated a considerable improvement in health with the use of gluten free diets. If you are suffering Crohns, Colitis or IBD, your doctor may have recommended this diet, and probably you have experienced relief from many of your symptoms. Doctors are also recommending it for other invisible diseases, where exhaustion is a major symptom, and they are getting good results. I recommend you discuss gluten free eating with your physician.

Any coping technique for pain is going to affect our whole being. There are many avenues down which to seek relief.  I have found many of the above methods a great help in allowing me to get more out of life.  By conquering a new means of pain management we cause another ripple to form.  It moves inward soothing our body, mind and spirit.  And secondary ripples flow outward relieving the worry of those who love us, inducing understanding and respect in those we work with and lightening the load on our caregivers.

Controlling pain is about putting mental and physical faculties to work simultaneously.  You’ve looked at the physical impact of chronic disease on you and both the physical and mental coping techniques for pain.  It is now necessary to explore the way the disease impacts on you mentally, so that you can continue to be proactive in dealing with pain and other issues of the disease.


1.  Make a list of when, where and how much pain you experience over a week.

a)      List the triggers of the pain (activity, food, physical problem etc.).

b)      Using the Gate method of pain control list beside each source of pain the mental and physical changes that will help close the gate.

2.  Make a list of the people that distract you.

a)      Beside each name write how this person distracts you.

b)      Arrange for them to spend time with you each week doing that activity.

3.  Introduce new coping techniques for pain to your routine one per week and select those that have the best results.

4.  Keep a log of your medication dosages and times taken.  This will help you keep track day by day, and offers a way of tracking cause and effect or side effects of the drug.

5.  Read Foods That Fight Pain and other books on this topic.

a)      Eliminate trigger foods for your particular disease and note the results.

b)      Add foods that bolster your immunity and improve your condition.





[1] Kathy S. Rabin; presented at the National Institutes of Health CFS “State of the Science” Consultation; February 2000. Published by CFIDS Association of America

[2] Smart Women (revised and updated), Barbara L. Thrasher and Maxine A. Smid; Macmillan Canada; Toronto; 2000.

[3] The Mind/Body Connection Mend The Body, Tune Up The Mind, 1999; taken from

[4] “The Role of Drugs”, Dr. Lesley Graff, Clinical Psychology Department, Health Sciences Hospital, Winnipeg, MB

[5] Foods that fight pain.  Neal Barnard, M.D.; Harmony Books, New York; 1998


  1. Marie
    Jan 29, 2015

    Wow. Very descriptive. Put me through a roller coaster of emotions.

    • Madelon
      Jan 29, 2015

      Thanks, Marie, for reading and giving me your feedback. It is always most welcome.

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