This video is designed for you to tap along with me.  You simply tap on the points as I do and repeat the phrases as I say them.  However, if I say a phrase that does not ring true to you, please be creative and change the phrase to meet your own feelings and beliefs or simply tap on that point without saying anything.  Then pick back up with us on the next point.

If you are not familiar with the tapping points, you can see a chart here.  For your reference afterwards, here is a pdf of the tapping script used in this video.

Also, I neglected to ask you to rate your pain on the lovely 0-10 scale before I began tapping.  So, please grab a pen and paper and write down your current pain level.  You will be rating it again after each round of tapping.

Happy Tapping!

As I stated here, EFT is a very effective tool for working with pain and emotions.  It is a form of acupressure based on the same energy meridians used in traditional chinese acupuncture to treat ailments for the last five thousand years.  The beauty of it is that you can do it yourself at any time and there are no needles involved. (I like that part!)

I am a curious sort and I wanted to know what meridian each tapping point was according to traditional acupuncture.  I thought you might be wondering the same.  The meridians also relate to emotions.  So, here they are. (refer to the chart (here) if you don’t remember the location of the points)

1. KC – Karate Chop Point – SI  3 (Small Intestine)
2. EB – Beginning of Eyebrow – BL 2 (Bladder)
3. SE – Side of the Eye – GB 1 (Gallbladder)
4. UE – Under the Eye – ST 1 (Stomach)
5. UN – Under the Nose – GV 26 (Governing Vessel)
6. Ch – Chin – CV 24 (Conception Vessel)
7. CB – Collar Bone – KD 27 (Kidney)
8. UA – Under the Arm – SP 21(Spleen)
9. TH – Top of the Head – GV 20 (Governing Vessel)

The Governing Vessel and Conception Vessel are the main rivers of the body’s Yin and Yang energies.

Emotions and Affirmations

Below are the emotions related to each of the meridians and the balancing emotion followed by a possible affirmation.  One possible EFT practice routine could be to tap each point and repeat its corresponding affirmation.

1. KC – Emotions: feeling divided, pulled in more than one direction. Balancing emotion: decisiveness. Affirmation: I know what I want (or will do)!

2. EB – Emotions: fear, anxiety, futility.  Balancing emotion: hope. Affirmation: I feel hopeful.

3. SE – Emotions: rage, judgment. Balancing emotions: tolerance, kindness. Affirmation: I practice kindness in all that I do.

4. UE – Emotions: obsessive worry. Balancing emotion: trust in the larger picture. Affirmation: I let go and trust in the Universe.

5. UN & 9. TH – Emotion: lack of courage to move forward. Balancing emotion: sense of strength. Affirmation: I can do this. Yes I can!

7. CB – Emotion: fearful isolation, shame. Balancing emotion: gentleness with self. Affirmation: I treat myself with gentleness, kindness and love.

8. UA – Emotions: over-compassionate, overwhelmed. Balancing emotions: fairness towards self and others. Affirmation: I breathe deeply and relax.

Source: Feinstein, David, Ph.D. and Donna Eden. “The Meridians and The Emotions: Why Energy Psychology Can Go Where Joseph Wolfe Never Dreamed”

We don’t need to know any of this in order to practice EFT.  I just figured that you might also be a Curious George and  want to know how the tapping points actually lined up with acupuncture points.

I am still working on tapping scripts for fibromyalgia.  In the meantime, I wanted to share with you a video from Brad Yates for “Vibrant Health.”  Please take a few minutes (it is about 8 1/2  minutes) to tap along.  You will be glad that you did!

Brad Yates on Vibrant Health

I want to begin by saying that once I was through the withdrawal period from the opiate pain medication that I was on, my pain levels came way down on their own.  However, I was left with some amount of pain that needs to be managed.  I thought I would take you through a typical day and the techniques that I use to control my pain.

When I wake in the morning I am always stiff and sore because of arthritis in my neck, back and hands.  Occasionally other joints join the party, but my neck, back and hands are pretty consistent.  I go to the kitchen for a cup of coffee and bring it back to bed where I sip it while leaning back on the heating pad.  I call this my “making peace with the day” time.  Sometimes I meditate or pray.  Other times I might check emails or read a few paragraphs in a book.

After breakfast, I take a hot bath.  I usually add epsom salts and soak a bit.  If I don’t have time to soak, I will sometimes apply magnesium oil** after my bath.  Then, with my muscles warmed from the bath, I lie on the floor and do gentle stretches.  Afterwards I spend about 15-20 minutes in mindfulness meditation.

That is the end of my morning routine.  I go about my day.  However, I now stop a couple of times in the day to perform EFT (Emotional Freedom Technique) tapping for pain relief.  I also have an Interferential Current Unit (like a TENS) that I use throughout the day.

As a last resort, when nothing else will work, I have decided to use medical marijuana to help control my pain.  This was not an easy decision for me.  I will be 49 years old in less than two months and I had never smoked anything in my life nor had I ever tried a street drug.  However, I felt I needed a backup plan for when my pain was not able to be controlled by any other means.  Luckily I live in a state that has legalized medical marijuana.  Because marijuana does not bind to the opiate receptor like pain pills do, I am also now able to take low-dose Naltrexone (LDN), which I do every night at bedtime.

In addition, I have also added California Poppy*** and find that it helps a bit with pain and with sleep as does the amino acid L-theanine.

I have set my phone to beep at me every hour and when it does, I do a quick check in.  If I need to stretch, do some EFT tapping, take in some slow deep breaths or just sit with my eyes closed for a few minutes, I do so.  I think the trick is finding a routine that works for you and fits with your lifestyle and then sticking with it.  And the really important part is always listening to your body and not letting the pain get too far out of control before you employ your pain reduction measures.

I lived for fifteen years taking opiate pain medication.  I always was concerned about whether my doctor would refill my prescription.  I dealt with the side effects like the ever present constipation.  And all the while, the medication that was supposed to be reducing my pain was creating more pain than it was relieving.  Gastroparesis was horrible and not something I would wish on anyone, but I am so thankful that it forced my hand.  I am happy to be off opiate pain medication and to have found alternative ways to manage my pain.  It feels good to be in control.

**magnesium oil can sting when first applied (especially if I have just shaved).  Also, it leaves a salty film on my skin, so I will usually let it absorb for 20 minutes and then shower or wipe off the residue.

***California Poppy is hard to find right now because Dr. Oz recommended it for pain and sleep on a recent show about fibromyalgia.

I have a new tool in my fibromyalgia and ME/CFS tool chest.  Well, actually, it is a tool I have had for about ten years, but it has lay fallow because I didn’t realize how powerful it was until just recently.  It is EFT or Emotional Freedom Technique.  Also called Tapping or Meridian Tapping.

EFT is a simple, yet powerful, self-administered therapy using your fingers to tap on acupuncture points while repeating key phrases that are designed to address whatever problem you are wanting to remedy.  I have been using it very successfully to treat my pain since I can no longer take opiate pain medications (read why not here).  In fact, it has amazingly alleviated more pain and freed up range of motion of my neck better than trigger point injections or opiate painkillers ever did.

A little history…

EFT was developed by Gary Craig in the early 1990’s.  It has a longer pedigree based in other forms of tapping, but I won’t bog you down in too much history.  I am sure you would rather get to how to actually perform the technique.  I just want to note that EFT is the most widely known form of Energy Psychology in the world.  Gary Craig retired a few years ago and his archive of hundred or articles and case histories was freely given to www.eftuniverse.com.

Try it on everything…

In 2009, brother and sister, Nicolas and Jessica Ortner, created a feature-length film where they brought ten real life cases together to spend four days with world famous teachers, speakers and motivators.  The group spent the four days with these Tapping practitioners to see if they could turn their lives around.  The results were fully documented in the film, “The Tapping Solution” and book, “Discover the Power of Meridian Tapping.”

The Ortner’s now run a website dedicated to Meridian Tapping at www.thetappingsolution.com.

Now for the how to…

Let me first say that I do NOT BELIEVE THAT OUR PAIN IS ALL IN OUR HEADS!  Please remember that as you read below.  Just like you, I am in pain from fibromyalgia, chronic fatigue syndrome and arthritis.  My pain is NOT in my head.  It is very real.  However, by working with my bodies energy meridians and some emotions, I have been able to relieve a lot of my pain.

I believe that we cannot have pain without emotions becoming involved.  I don’t believe we can do anything in life without involving our emotions; good or bad.  With pain, it is negative emotion that we feel.  This causes a disruption in our body’s energy.  By restoring balance to the body’s energy system, we can heal some of the negative emotion and therefore impact some of the physical pain.

The basic tapping technique requires you to focus on the negative emotion of the moment: anxiety, fear, unresolved problems, bad memories, etc. While concentrating on the issue at hand, you will tap 5-7 times on each of the body’s meridian points.  (Here is a diagram)

You will begin with the karate chop point and a set-up phrase.

Confused yet? Let me demonstrate…

EFT Habit of Pain

Here is a link to the “Habit of Pain” excerpted from Stacey Vornbrock’s book, “Injury Recovery, The Ultimate Injury and Trauma Recovery Program.”

This was a very brief introduction to the subject of EFT.  I intend to do future, more in depth posts with scripts targeted more for fibromyalgia, chronic fatigue syndrome and IBS.  If you have questions or specific requests, please post them below and I will either answer them or address them in upcoming posts.

A couple of years ago my fibromyalgia had become quite bad and so I made an appointment with a pain management specialist at OHSU. As I always do, I took my recent lab results with me to the appointment. Among these were findings that showed my hormones were totally out of whack.

I had recently found out that my DHEA was all but non-existent, my testosterone levels were extremely low, my estrogen and progesterone were both low as was my nighttime cortisol. The doctor said, matter of factly, “Oh yes, we see this all the time. Opioid pain medication disrupts the bodies hormonal system.”

Really? At this point I had been on opiate pain medication daily for over a decade. However, this all kind of washed over my head because I was thinking of getting off the opiates and trying low-dose Naltrexone (LDN), which I had just heard about from **this video featuring Dr. Sean Mackey from Stanford University.

And, I did. For a number of months, I was off opiate pain medication and treating my fibro with LDN and more natural methods…and then I slipped back into taking pain medication again. I am not totally sure why. Partly it was just easier than managing the pain by other methods. At the time, I forgot all about it unbalancing my hormones. Of course, if you read this post, you will know that I am now off the opiates again for good and that I am wishing I had never gone back on them. Ah, hindsight!

Here are the facts about opiate pain medication and hormones…

The hormonal effects of opioid usage affect both men and women and have been documented during oral consumption as well as transdermal, intravenous and intrathecal administration. Various studies have shown the opioid usage effects a variety of hormones including testosterone, estrogen, DHEA, cortisol and others.

Men can suffer from side effects including sexual dysfunction (i.e., erectile dysfunction, decreased libido, etc.), depression and decreased energy levels. While women experience depression, dysmenorrhea, sexual dysfunction and potentially, reduced bone mineral density.

In women, the reduction in estrogen may lead to osteoporosis and fractures in the older population.

One source indicated that long-term opioid use could cause sex hormone production to nearly stop with the entire hormonal system impacted, including the thyroid. The consequences can create a domino effect that can cause emotional imbalances, sleep disruption, metabolic changes and cardiovascular stress.

In addition, opioid drugs may affect the immune system. Preclinical research has shown that opioids alter the development, differentiation and function of immune cells.

I am now working with my naturopath to balance my thyroid, adrenals and sex hormones. I have no idea, and could not tell from my research, if the damage to the endocrine system is permanent or able to be repaired once the opioids are stopped. I guess time will tell. I do know that I am no longer willing to jeopardize major body systems by taking opioid pain medications on a regular basis. I will reserve their use for emergency short-term use only.

**This video is about 3 years old at this point. There is even more data out recently confirming that LDN is beneficial in treating fibromyalgia.

Resources:

Opioid Complications and Side Effects http://www.painphysicianjournal.com/2008/april/2008;11;S105-S120.pdf

Opioids for Chronic Nonterminal Pain http://www.medscape.com/viewarticle/549294

The Consequences of Long-Term Opioid Use for Chronic Pain http://www.healthcentral.com/chronic-pain/c/27148/138734/consequences

The Effects of Opioids and Opioid Analogs on Animal and Human Endocrine Systems http://edrv.endojournals.org/content/31/1/98.full.pdf

This is going to be an unpopular post with some of you, and believe me, I understand. Until just a few weeks ago, I would have been leading the march for the rights of fibromyalgia and ME/CFS patients to use opiate pain medication. I, myself, had been on them for fifteen years. However, today…I see things differently. So, what changed?

For the last fifteen years, or so, I had been taking Tylenol 3 on an as needed basis. I usually took one a day; sometimes two — rarely none. This was mainly for my fibromyalgia pain. More recently I have developed progressively worsening arthritis pain in my hands, back, neck and hips. I also have occipital neuralgia — a headache that wraps from the base of my skull, on the righthand side, up and over and ends behind my right eye. As this pain increased I was given Percocet for the really bad days.

As I continued to have more and more bad days, it was decided that a long-acting pain medication might be better and I was given Opana (oxymorphone) and the Tylenol 3 and Percocet were traded for straight codeine and oxycodone for breakthrough pain. I thought this was great! My pain was better controlled than ever and I wasn’t fighting doctors to get medication. It was all hassle free. I could just get on with my life virtually pain free. But wait…not so fast!

Soon I began to develop trouble digesting food. I see a naturopath on a weekly basis and I kept telling her that I just couldn’t seem to eat much food without a lot of GI symptoms. I was bloated, gassy, had indigestion and felt full too quickly. We kept working on altering my diet and my supplements to no avail. Meanwhile, blood tests were coming back that I was hypoglycemic right after I had eaten a high-protein meal. On top of that, my blood pressure seemed to be dropping lower and lower at each doctor’s visit. Something wasn’t right.

Finally the term gastroparesis was uttered and I was put on a more liquid diet using high-protein shakes. Still I was getting full too quickly, losing my appetite for all foods and my weight was beginning to drop. I didn’t have excess weight to lose! My naturopath finally scheduled me with a gastroenterologist.

At the appointment with the gastroenterologist, he concurred that most likely I had gastroparesis from the pain medication that I was taking. Gastroparesis is basically a “paralyzing” of the stomach so that it doesn’t empty food into the small intestines the way it should. Therefore you feel full because your stomach still contains food. This can also cause low blood sugar because food is not being absorbed by the intestines since it isn’t reaching them. The doctor wanted me to get an ultrasound of my abdomen and then scheduled me for an endoscopy procedure. He would put me to sleep and go into my stomach and intestines with a scope and take a look.

About this time, the group I co-lead (Portland FibroCFS) had our monthly meeting and Dr. Ginevra Liptan (“Figuring Out Fibromyalgia”) spoke about “Pain Management.” It was an eye opening talk and you can read about it in a post that my co-leader, Tami Stackelhouse, wrote here and here. The part of the talk that really captured my attention was how opiate pain medications used longterm work to increase our pain in the long run. What? No one had ever told me this!

The following Friday I had an appointment with the nurse practitioner who does my trigger point injections. While she was working, we were talking about my GI troubles, low blood sugar and low blood pressure. She felt strongly that I should be tested for adrenal insufficiency secondary to opiate pain medication use.

Okay, enough is enough! I stopped my Opana (oxymorphone) that night! I figured it was the worst offender. My pain level shot through the roof, so I took some oxycodone and my stomach seized up. I stopped oxycodone that night. My pain levels went higher. I waited a couple of days, but couldn’t take the pain, so I took my codeine. My stomach seized up. I was done with the codeine. (By the way, I don’t advise stopping medications without speaking to your doctor first. I was impulsive.)

I wasn’t sure how I was going to do it, but I knew I was off opiate pain medication. The consequences of taking it were just too dire. While my pain levels were enormous, my stomach began to recover. Thank goodness I had not done permanent damage to it.

My doctor explained that the increased pain (and also insomnia that I developed at this time) were withdrawal symptoms from the medication. I had to just ride it out. I did so with hot baths, meditation, stretches, more hot baths, reading a book…anything I could do to take my mind off the pain. And, it did begin to subside!

Because I was no longer on opiate pain medication, I could begin taking low-dose Naltrexone. I also had opened up some options for sleep medication combinations, my doctor advised. It has now been about three weeks since I stopped the oxymorphone. My pain has greatly diminished and is mostly manageable naturally. I do have times that I wish for a pain pill, but I now understand the cost and it isn’t worth it to me. This is my personal decision.

I felt this story needed to be told because others may not realize the hidden risks of longterm use of opiate pain medication. I was speaking to my health coach, Tami Stackelhouse (yes, she is also my co-leader and she is fabulous) about how we are always looking for a quick fix in the form of a medication instead of doing the hard work to correct whatever is imbalanced in our bodies. This whole situation has caused me to do some deep thinking about where I am headed with medications and my body and health.

As I approach the one-year anniversary of contracting the fateful virus that ignited myalgic encephalomyelitis (commonly called chronic fatigue syndrome), emotions have been rolling through me and over me. I have not written much about ME/CFS over the last year. I think I always felt that it was a temporary guest and that soon I would wake up and my life would have returned to “normal.” I guess I must now admit that isn’t happening. So, this will begin a series of blog posts about what it is like living with this illness that has totally changed the landscape of my life in so many ways.

It is hard to believe that a year ago this time I was feeling pretty good. I had a decent amount of energy, was on few medications and was treating my illness (mainly the osteoarthritis was active; the fibromyalgia and lupus were fairly well controlled) with naturopathy. Each morning I would be up by 3 – 4 AM (my favorite time of day) to work on my novels and meditate. After breakfast, we (my husband, two dogs and myself) would hike our very steep 13-acre property where hubby has carved out trails just for that purpose. I would then spend my days working on my novels some more, running my support group or playing on the internet before I went into the kitchen for a couple of hours to prepare dinner. Cooking being my stress reliever and joy.

That all changed on February 21st when I caught a random virus from someone we were visiting at the time. Hubby caught the same virus. He got over it. I didn’t. It ignited a firestorm of symptoms in me that just continued to worsen. It began as any virus with flu-like aches, chills and fever. And then it continued. My list of symptoms now include swollen lymph glands, constant sore throat, earaches, chronic daily headache, vertigo, multiple chemical sensitivities, sensitivity to light, sound and smells, crushing fatigue/exhaustion and post-exertional malaise, constant fevers, body aches, chills, digestive troubles, cognitive difficulties and brain fog. I feel like I am forgetting some symptoms, but you get the picture.

I will discuss more about all of this and what the last year has been like in future posts. For now, I wanted to address the emotional troubles I am having with the one-year anniversary approaching of when I contracted this illness.

I have been ill for most of my life and so have had one-year anniversaries of illnesses before. I don’t remember ever thinking anything about them. And I wasn’t thinking about this one. At least I didn’t think I was. I just was becoming more and more depressed. This is not an emotion that I let go unexplored after having spent too many years of my life in depression. I never want to revisit that time, so I was not/am not letting this depression stick around. Therefore I took a long hard look at what could be the problem. I had been sick for a year, so surely it couldn’t be that, could it? But there wasn’t anything else that was upsetting me.

It took some internal exploration before I realized that the depression was driven by fear. The fear was coming from the fact that my condition just continued to worsen and worsen. I wasn’t concerned so much about that per se. Sure, it is upsetting. I did recently have to begin using a wheelchair when faced with walking long distances. Also, I just obtained a handicapped placard for my car to use if I really need it. I no longer can drive due to the vertigo and exhaustion, but sometimes my hubby might need to park close in and walk with me instead of dropping me at the door and going to park as is our usual practice. But that wasn’t the source of my fear.

No, the fear is coming from the fact that I run the local support group for fibromyalgia and chronic fatigue syndrome and I am afraid that I might become too ill to even continue to do that. I am afraid that as I continue to worsen, worsen and worsen that I won’t even have the brain power let alone the physical ability to run the group and that would break my heart. I have spent my life in careers that I “fell” into and that didn’t mean that much to me. They were a paycheck. I didn’t hate them and I enjoyed the people I worked with, but there was no passion for what I did. Then two years ago I took over running the group from the founder who was moving out of state. And, after 40+ years of living, I had found my passion. Now two years later that passion is being threatened by a random virus I caught on a trip. Thus my fear that is spiraling into depression.

I am working with my doctors and health coach to better plan my days so that I can get more rest and therefore not spend so much time in such pure exhaustion that I can’t function (called a “crash” in ME/CFS terms). This is helping me find ways to keep running my group on my limited energy stores. The fear/depression cycle is draining my energy. Just understanding what is going on emotionally helps a lot. If I can relax that fear a bit and allow the depression to ease, I will have access to more energy. My wonderful hubby has offered to help all he can with running the group and I have an amazing co-leader that has my back. Finding the positives helps!

So, this is an anniversary that I probably won’t be celebrating by eating cake and blowing little bugle horns. However, it is one I maybe also don’t have to mourn quite so much as I was. I can maybe work on letting it be just another day. Another day in which I have found my passion. That is something to celebrate!

This world is just not user friendly for those of us with ME/CFS. I am sure the same can be said for many different illnesses or handicaps, but I can only speak about the one I live with.

I went for my first physical therapy appointment last Friday to rehab my messed-up neck and cervical spine. I walked into the office and was immediately hit by the receptionist’s perfume, followed by the bright fluorescent lights and then the music playing. Already reeling and dizzy, I was handed several pages of forms to complete that to me were much too complex. I wished they had mailed them so that I could have done them at home where it was quiet, not so brightly lit and just less sensory stimuli in general. However, like a good little girl, I went to work trying to “do my best.”

Finally I was down to one final form that I just couldn’t grok. I told the receptionist it would have to wait until I had spoken to the physical therapist.

The physical therapist soon came to get me and he was also wearing cologne. He took me to an exam room with another bright fluorescent light. Luckily this one he was able to extinguish and turn on something dimmer. He then took me through a battery of tests for range of motion, reflexes, etc. Once finished, he explained my condition to me and what we could do about it.

He performed some therapeutic maneuvers that were painful and had me do three gentle stretching-type exercises. He stated that he needed to see me twice a week for four weeks and didn’t seem to understand when I said this wouldn’t work. As I was leaving, his assistant chased me down with the form I hadn’t completed and had me finish filling it out.

Dizzy and exhausted, I clung to my husband as he led me to the car for the roller-coaster ride home.

At home I had a phone appointment that ended up lasting an hour and a half. When this was over I was done for the next 48 hours. Yep, the old push and crash that I have almost made an art form! Because I forced my way through for a few hours on Friday, I spent the entire weekend unable to function. Not a good trade-off.

Because the world is not going to change to accommodate those of us with ME/CFS, it is up to us to anticipate these obstacles so that we can prevent as many of them as possible.

From now on…

• I will ask all new medical offices to mail me any forms so that I can complete them before my first appointment.
• While it might be embarrassing, I will wear my sunglasses inside any office that has bright fluorescent lights.
• I intend to purchase earplugs that I can use for times that loud music is playing or any other noise is disturbing me.
• I have written an explanatory sheet about ME/CFS that I intend to give to my PT and will take with me to new appointments or meetings if I think I might need to educate whomever I am seeing.
• I will remember that it is my body and my decision, so if I need to set a limit of one appointment a week, then that is what I will do.
• I know better than to be on the phone for more than 30-45 minutes at a time and so “shame on me” for not speaking up and saying that I needed to continue the call on another day when I was more rested.

I don’t know that I can do anything about the perfume and cologne; however, if I can mitigate all the other factors, then maybe I can better tolerate that assault on my senses.

No, the world is not user-friendly for those of us with ME/CFS, but we must remember that we have the power to plan ahead and do things that make our own lives easier!

Does the “Pain Scale” confuse and even scare you a bit as it does me?  When I am asked by a doctor what my pain number is I freeze up.  I feel like I am in grade school taking a test and am in fear of failing.  I stammer out a number and then think, “Was that too high?  Too low?  Did I say the right thing?”  It is crazy-making!

Recently I have been tracking my pain hourly on my “Healing Companion Journal,” which really has me thinking about what the numbers on the scale mean.  I actually feel like I am doing something wrong marking the higher numbers (anything above a 4), like the pain police are going to call me out as inflating my answer even if I am in a lot of pain.  So, I set about trying to make some real sense out of the scale.

What I found was that it really is all over the map depending on the author of the scale.  I think you have to choose one that feels most comfortable to you and then stick with it.  That way your numbers will have relevancy to each other from day to day.

Here are some of the scales I encountered in my search…

This one with its sad faces could be good for children, but I found it of little help with my daily fibromyalgia and osteoarthritis pain.

At first I thought this “What Is Your Weather?” scale was going to be a good one, but once I really read through it, I realized that I would be a “Snowed-In 10” almost every day.

This one was better, but still not quite there, plus I realized that I didn’t know the true definition of the word “moderate.”  I consulted the dictionary.  Moderate:  “kept or keeping within reasonable or proper limits; not extreme, excessive, or intense: a moderate price.” I had mistakenly been calling my much higher pain moderate because I hadn’t researched the definition.

I found another one that I was unable to link to.  However, it was the one that in conjunction with these above finally provided the answer for me.  The pain scale that I am now using is:

0-1 No or very little pain

2-3 Mild pain

3-4 Discomforting

5-6 Distressing

7-8 Severe

8-9 Intense or very severe

10 Worst pain imaginable

I eliminated the word “moderate” and used “discomforting” instead.  It is defined as: “something that disturbs or deprives of ease.”  To me this signifies when tasks or life is becoming uneasy due to my pain level.

Distressing is actually where I am much of the time with my osteoarthritis.  Distressing is defined as: “great pain, anxiety, or sorrow; acute physical or mental suffering; affliction; trouble.”

I now feel like I have a pain scale that I can work with the genuinely reflects my true level of pain or discomfort.  Maybe next time the doctor asks me what my pain number is, I will be able to state it with confidence.  Or maybe I will just show them my “Healing Companion Journal” so they can see for themselves!

Update: A friend pointed out another pain scale that is really excellent.  You can find it here.  Be sure and scroll down to get the full explanation for the numbers.  Once I spend more time with it, I might have to expand my scale a bit with some more explanation.  So stay tuned!

Last night I read a question in an email by Jennifer Louden that really struck me. “In what way have I been living in the shadows in 2011?” Basically, what have I been hiding or afraid to expose about myself?

My first thought was, “Nothing.” Yeah, right. So, I thought harder. And what I quickly had to admit was that I have been hiding a pretty significant fact…how sick I really am. Yep, I talk a lot about having fibromyalgia and chronic fatigue syndrome, but when it comes right down to it, when I am around people or even on the phone, I act like I am doing much better than I truly am. Then I pay like hell when I am behind closed doors with just my hubby and my dogs.

I think some amount of “bucking up” when you are around people is normal and we all do it. However, I know that I probably go the extra mile. Why? I don’t think I feel safe letting others see how ill I really am. I am afraid they wouldn’t like me if they saw the “real” me. If they knew the truth.

Illness has been with me my entire life. I have some symptoms of my current illnesses going all the way back to grade school. I also have memories going back that far of being called a hypochondriac. I grokked by junior high school that my life was easier if I just hid my symptoms. And that is what I did. Unless it was serious enough to scare me into saying something to my parents, I just kept it to myself.

The second half of the question was this, ”How might my life change if I came out into the light in 2012?  What strengths could I discover and share if I gave up hiding my weaknesses?

I can think of a number of ways that my life would improve if I stopped pretending to feel better than I do.

• It would help me stop the push/crash pattern I have been living with.

• It would allow me to admit when I am tired and ask for help instead of soldiering through.

• I think when we hide any one part of ourselves, we also hide other parts without intending too. I could be more authentically me if I stopped hiding how ill I am.

• It might allow others around me to admit how they are really feeling and that they too need to stop and rest.

Mostly I have been thinking that I am doing a real disservice to everyone who has chronic pain and illness and especially fibromyalgia and chronic fatigue syndrome by saying I have these illnesses but then acting like I am more highly functioning than I really am.

Last year, when I developed chronic fatigue syndrome in addition to the fibromyalgia I had had for years, I did admit to the support group I lead that I couldn’t do all that I had been doing. They were incredibly understanding and encouraging. But my lifelong “programming” kicked in and I promptly went back to doing and overdoing during the group meetings just as I always had.

I need to be more congruent with what I say and do or I am not being fair to myself or to anyone else who has these illnesses. Therefore, in 2012 I am going to do my best to be more honest about how I am really feeling and not try to cover the extent of my pain and fatigue when I am face to face with someone or talking on the telephone. This won’t be easy, I know. I do think the benefits of making the change will be well worth it.