"It's Not Your Knee, It's Your Spine"

A Red Herring

Last weeks emergency visit to my Orthopedist was a visit full of questions, discussions, studying information not previously seen, and an ending diagnosis that was not what I hoped to hear, although I will reveal that I knew this was the root cause of this acute and severe nerve pain running down the anterior thigh.  

The best part of this:  I have a competent doctor, my questions are answered, and I know which direction I am heading.  It's always so freeing to know what exactly is the root of my pain.  We're not there yet, but I must say that I am quite impressed with this Orthopedic Surgeon.  

Another Red Herring in my life with this destroyed spine.  (*Red herring: noun, An English-language idiom that commonly refers to a type of logical fallacy in which a clue is intentionally or unintentionally misleading or distracting from the actual issue.)

First time an RH happened was 1996, year of my first Thoracic spinal surgery.  Something else was focused on, leading the physicians away from the cause and leaving me still suffering from the pain of the original issue while the Red Herring was taken care of.  

16 years later, this one is an interesting combination of an actual injury that could cause this type of pain, making it even more challenging to get to the root of the matter.  

I like docs who have recently been in training of sorts, whether it be a resident, etc., or a physician that has his entire career in front of him, excited, driven, actively determined to find what is wrong with his patients.  This doctor is one, very clear, and above all, he uses really great descriptive words when explaining something to me.  The kind of medical terms that aren't normally used in most physician/patient interactions.  I love it.  I learn so much, it's like a class mixed in with a visit.  I am looking up words after each visit!    

As he reviewed the standing Xrays that he ordered, I got out a copy of the most recent CT scan of my Thoracic spine, wanting to make sure that he had as much information as possible.  Although we were studying the knee, having that spine report was invaluable to the total patient view, a Holistic view.  

Then it was time to manipulate the knee joint.  After finding a spot that was extremely tender to palpation (that would later receive a Depomedrol injection) he asked me to lie down, supine with my legs straight out on the exam table.  I moved from sitting on the side of the table, and swung my legs around to lie down.  Oh.  Hold on!  Not happening.  I could not lower my torso and my leg at the same time.  I was stuck in a little 'v' shape, unable to move any more.

Severe, sudden pain shooting from my uppermost thigh down to the knee hit, the reason I was there a week early, not able to deal with it for another 7 days.  With my history of living with pain, this indicates an acute issue that demands immediate attention, for I am not one to run to the doc when it hurts.  This is that acute pain, nerve pain.  Stinging, it slams into your brain.  I can't help but think of James Franco in !27 Hours when he cuts the nerve in his arm.  It's the worst part of everything that had to be severed.  Nerve pain--The kind of pain that screams at you, shouts- and shouts loud, and you know you are not moving.  It burns, hits like an electrical jolt.  As I struggled just to get into position, I saw the doc watching it all, not helping me, just watching, and a look came over his face.  One of AHA!  The final question seemed to cap it all off for him, "Do you get numb in your leg below the knee, as in your feet?"  I answered "Yes, when I am driving", and that was that.

That's when I knew what I was going to hear, which direction this road will take me.  The good doc had a couple more positions he wanted me in that I just couldn't pull off, so the knee exam was cut a bit short.  He left to look again at the MRI of my knee, and also went in for a quick chat with his partner, a spine surgeon.  He asked me to walk out in the hallway so his partner could observe my strange, bent-over gait.  I can't stand up straight, it exacerbates the nerve pain to the inability to walk.

The diagnosis?  Suspect Sciatica with acute nerve compression, most likely in the upper Lumbar spine. Next stop is an L-spine MRI.  Last one I had was '02, it is basically a read of my Thoracic spine study, herniations, bulky osteophyte complexes, blah blah.  I am looking forward to seeing the changes over 11 years.

I am putting up my standing Xrays in the next post, which is already written and was ready to go, but that was before Ms. Screaming Nerve decided to speak up, helping us to get to the bottom of this, but really disrupting my writing groove, man.  ;)  

Gentle Hugs.......

Staying Positive in a Life With Pain

At times of silence, it is there that I find my peace.

In a daily struggle with pain, feeling beat down is very common, and can affect us all negatively.  Taking the time to be still, to assess the way you are actually living your life, will also pay off in the sensation and level of pain experienced.  Take a look at your choices of how your life in pain is expressed.  And remember, Chronic Pain is along for the ride--each day.  These days add up (oh so quickly) and this is your life.

Attitude is about 90% of the ability to enjoy life.  If your life has a constant companion called pain, being positive is the only way to make it through.

Interesting, Chronic Pain.  As a Hospice nurse, I have seen many who were experiencing pain.  These amazing people knew that they were spending their last months here.  I know there are people out there who are battling many diseases, such as cancer, brutal even in it's name, and can be likewise in it's pain.

I have always written honestly, and lately I have been contemplating those in worse situations than mine.  (This is obvious to all of us who deal with any illness)  I have never said here that I am to be pitied or am I asking for sorrow from others.  Actually, it is the complete opposite.  Yet my heart breaks for others.  All the time.  This empathy also keeps things in focus.

In staying positive in attitude, I can gather enough strength through my own battle with pain, to write and pass to others how much I care and hope that they, too, can access this attitude and see the beauty that lies in wait.  Focusing on anything but the pain, acts as another deterrent, a tool to use when you have lost yourself.  Lost yourself IN yourself!  Focus outwards.

Negativity only brings with it negative thoughts.  Just as we have seen how getting proper medical care for Chronic Pain can leave you feeling down, depressed, as if no one cares.  It is so easy, so very simple, to follow that train of thought and down you go, along with the thoughts.  Thinking about yourself.  I am not being a Pollyanna here, knowing firsthand how chronic pain can affect nearly every aspect of life.

Having been at the bottom of depression, I refused to return.  Only I can take charge of how I choose to deal with the situation handed to me.  A twisted, mangled spine?  Me?  But I can walk!  I can still enjoy my life!  But I 'Look So Good'!  It is rare for me to tell anyone that just because they can't see it, I hurt.  ALL the time.  That is reserved for the people that know me well, and make it comfortable for me to speak openly about what is going on with my spine, how I am doing with the lowered medications, how my pain levels are, and I feel the caring and true interest from them.

Why yak on about how I hurt?  No one really wants to hear complaining.  I believe in honesty (and wish it was that easy and simple for others) but I choose not to include that part of me quite as openly as I am with most other subjects.  I support the fact that hiding the subject of Chronic Pain is not the way to go about life, I am speaking of how I have chosen to deal with the subject in my interactions with most people.  It's kind of like, "Don't call me, I'll call you", in that I don't bring it up, but I will be 100% honest if asked.

It is here that I remember how much I am blessed to be here.  I am alive. I wasn't ejected out the doors when the van rolled over.  I am walking.  I am very content in life.  Whatever road took me here, part of it was my journey in pain.  Many years I have had this companion.  Always a partner, always along for the ride.

Nature's beauty, the daily newness of this world, wonderful people that weave into my path, pull my thoughts outward, and I decide that my pain is not going to keep me down.  I refused that a long time ago.  Brush away the negative thoughts and try to see that you alone, carry the ability deep within you, to choose how you are going to view the world and how you fit into it, pain or not.

I am writing in pain right now.  Most of the words you read on my site were written in pain.  Yet that does not have to immediately be followed by anger, self-pity, negativity, or giving up.  I have dealt with pain for years.  Every damn day.  Oh, I went through all the negative steps.  I went down.  Way down.

Never to return again to that way of thinking--with great determination and passion for my own life and well-being, I pulled myself up and out of that world.  Be aware of who surrounds you, for negativity is not what you want in life at this juncture.  Want to feel happier?  Hang with those who make you laugh, or better yet, laugh at your jokes!  Realize that those who we love are watching us, our children especially, and as they still learn through this excellent passive learning method, isn't it better for everyone if you took the reins and blazed the path for happier times?

You will feel as if the world opened up.  Just for you.  The sunsets have always been a special time, and now is no different, watching each one with wonder.  Hard to believe there was a time in which I really didn't give a crap one way or the other if the sun was even going to rise.

So. Cal Sunset
Photo credit: Shauna Harrelson

A sunrise to a Chronic Pain patient may feel like just another day of misery.  It does not have to be so!  Regardless of the etiology of the pain, there is no rule that those in pain need to look, act, or sound like they are hurting.  Possibly mean and grouchy; angry at all the wrong people.  When letting go of the concept that the invisible pain needs to be outwardly shown, attempting to prove something I suppose (since there is usually no apparent Medical Equipment) everything changes.

I have been told how strong I am, how much passion I have in sharing my life in pain, helping others cope with their lives in pain, and this is rounded off with medical professionals sharing with me that some of the most resilient people they know are those living with Chronic Pain.  We must learn how to deal on a daily basis with pain, serious pain, for life.  Quite a daunting challenge- no?  And on top of this coping, we are better off to do it all in a positive manner.  Now that all sounds a bit overwhelming, and this takes time.  I had to go through the darkness to come into the light.  I had to be angry before I could be happy.  I had to feel sorry for myself before I could come to a place of peace.

Finding the peace is the journey.  And every journey has it's unexpected moments.  Have a good time getting there, for life is what happens while we're busy making other plans.  (John Lennon)

Gentle Hugs....

Related articles

• A living hell: life with chronic pain

The Next Chapter--More Surgery?

Nearly 5 months since my decision to decrease opiate pain medications, I am now feeling every single herniation, osteophyte, impinged nerve, spinal cord compression, etc., in my spine.  All 12 levels of my Thoracic spine are herniated, with multiple bulky disc/osteophyte complexes, ligament calcification/hypertrophy, nerve impingement, costo/vertebral issues, spinal stenosis, and more.  The Thoracic Spine is the root of 95% of my pain.

Stenosis of the Spine | Illustration of Spinal Stenosis | Spine Doctor in Vail, Colorado (Photo credit: neckandback)

I am proud of myself for sticking with my plan, decreasing medications, to a now 75% reduction.  I have also been doing this on my own.  My physicians are aware, of course, but no 'support' to speak of, except for the consistent encouragement from those who care about me. (Including online support)  I am happy I did it, the process (and it certainly is a process) is not fun to experience.  Not something many would enjoy. **If you are also decreasing your medications for chronic pain, or considering it, I have only positive feelings about that decision.  It is a personal, yet an important medical step, in that what will follow, must be planned or at the least, discussed with your treating physicians.  Keep on the road you have started out on.  It is brave and courageous  for many in pain have been told that without the meds, living will be a challenge.  (Living in the sense of any quality of life.)  I beg to differ.  Quality of life is subjective, just like pain.

Treating the cause is more important to me now than ever going back to straight medication management.  There is more out there for you than a life taking pills and not really feeling that good anyway!  Personal knowledge of others in chronic pain are many, the stories are so varied, some have either sunk into the 'poor me' category, or/and have gone the pill route big time, with non-compliance in taking too many, to selling them on the side.  Hang in there if your choice is to decrease or stop altogether.  I received wonderful emails from others in pain who are also either decreasing (and feeling better) or have stopped medication.  Another reason why writing here has great benefit in support from others that are experiencing the same thing.  Thank you to all who shared your story with me and gave me such encouragement!  So that chapter is now over, and I move on to the next.

What is next to be written?  What is to come and what process am I to go through next?

The level of damage in my spine is such that my options are to FIX the anatomy, or to COVER the pain from that damage.  I have been doing the latter.  It obviously was not the long-term answer for me.

For now that I have decreased to this point in my meds, the pain has returned, with a vengeance.  This pain and the sensation is totally different than anything I've felt before.  This is a 'Mechanical' pain.

What is happening, is now that I have lowered meds to a bare minimum, I feel vertebrae moving, I hear them 'popping' which I believe is a slipping, I am able to really sense what the cause of many things are.  My instability feeling-common in spinal stenosis, FBSS and other issues, has gotten worse. (My neck is also popping/grinding).

I fell in January onto my spine, onto concrete, I am sure I broke ribs, and cracked vertebrae, or further injured my spine.  My pain doc immediately ordered an Xray to rule out fracture of either.  Two weeks later I hurt my knee (which I recently was informed has multiple injuries--totally different than originally told to me) so the direct fall on my back went to the back burner.  I must remember this is very serious, and I need to start paying more attention to the root of my pain.  What I did to it when I hit the concrete must be addressed.

For the past 9 years, I have felt as if I need a rod down my Thoracic spine, to feel stable again.  I began searching online for Thoracic surgery, and I found not only a surgery exactly like mine in 2001 (Costotransversectomy with fusion is not a common surgery) but also discovered Minimally Invasive Spinal Surgery.  At the University of San Diego, a team of dedicated spine surgeons strive to improve the disadvantages of open spinal surgery, taking full advantage of all the new equipment that helps the surgeons view the patient from many angles, still ending with simple band-aids over the entry points, even though there may be screws, rods, and other hardware inside.

The cutting of the muscles necessary to obtain the proper views in spine surgery, so as to isolate nerves, spinal cord, etc., results in a long recovery, post-op pain, and continuing pain.  The muscles that 'run along'  the spine, commonly called the Paraspinal muscles, are actually a group of muscles that do not run in a parallel line at all.  I am speaking of the superficial muscles of the back.

In the method being used now, small incisions are made to insert the camera, and others to insert the instruments needed.  I would need multiple levels worked on, and in the non-invasive method, this may be something I could recover from without the extreme post-op pain and long recovery and rehabilitation, simply due to muscles being cut.

It says a lot for me to even be talking about another surgery.  And this is not 'just' one or two things being fixed.  The choices I have had for many years have been few, regarding the available methods to treat my pain.  I have said since the Costo in '01 that I would not have another surgery, and I concentrated on proper and thorough pain management. Eleven years later, I am ready to try something else.

Thanks for the support and telling me your own stories.


Gentle Hugs....

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This song inspires me by the energy it holds, it puts me in a great mood, and I have adored Freddy & Queen since they were played over here in the US.  Kind of an ironic tie I have to them, 'Bohemian Rhapsody' was playing on the radio the night of the rollover accident.  Because I was blindfolded, my hearing was heightened, and that song is forever engraved in my mind as the soundtrack to that slow-motion night.



*Only Freddie can play the piano just by standing near it.  ;)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And this one....an acoustic 12 string played beautifully by Brian May and a tenor such as Freddie?  Amazing.

Sharing the Sadness

Writing today was interrupted in reading of the sudden and untimely passing of Jennifer Jaff Esq., who fought for those with a Chronic Illness.

She founded Advocacy For Patients with Chronic Illness, was the executive director, and was a lawyer that worked tirelessly fighting for the civil rights of those who have Chronic Illnesses, and all the while she endured her own chronic illness, Crohn's disease.

Jennifer was a bright spot in the sometimes dark and cruel world that faces individuals with Chronic Illness.  Hidden, apparent, or the kind that sits silent- waiting to rear it's ugly head at any time; Chronic Illness is an awesome foe to deal with on a daily basis.  She faced discrimination on airplanes, due to her chronic illness,  and wrote about these experiences, captivating her readers with her descriptiveness and honesty.  She let us feel that we were not alone in this journey.

Thanks friend, I never met you, but you touched my heart.

Have a swift journey.


Gentle Hugs....

Related articles

• Finding Inspiration After the Loss of an Advocate

The Winds of Change

In the past few months, I have been experiencing a series of events that have led up to a change in my life of pain.

Virtually unable to explain how this has made me feel, I can say that I am happier, more positive, and much more in control of my life than I have in a long, long time.

Taking back control had to be the key in this equation.  I was locked in, a puppet, a reactor, and I am tired of that.  Waiting for others to pull my strings, as I sit limp, wanting things to happen, but not in control of any part of the situation.

I assessed myself, and saw what it was that had to be done to continue in a healthy, positive, safe manner in my pain management, and my life in general.  The emotional and psychological effects,  that were a result from the endless waiting, the not knowing, the uncertainty, the incompetence, and always being at someone else's whim; were grinding me down.

Over the past months, I have been silently and quietly decreasing my dosage of pain medications.  With help from my beloved ex-pain doctor, and my wonderful primary care physician, my intake of medication is drastically lower.  This is a survival strategy, not a pain management strategy.  Although it is a well known practice for pain patients to be detoxed or weaned off when pain keeps increasing despite high doses of medications.  Then pain is assessed in a medication-free (or greatly reduced) body.

When I wrote the post about being prepared to get ON opiates, I received one particular email from a pain patient that talked about making the decision to decrease their medications.  I found that interesting, probably because I was smack in the middle of all these other factors and events and people that were all a part of my decision.  It was just another 'factor' that showed up.  And became a new friend!

This is an extremely personal decision, just like starting on medications like so many pain patient choose to do when there is nothing left to do to help the constant pain.  This is also something that (similar to starting meds) must be followed closely by a doctor.

When the winds blew in, I was ready for change.  This seems to be one of the best and most positive changes I have made recently, for I feel great, and most important, my pain is under control at this time. The way the Universe came together over the past months has intrigued me, swept me up, put me back in the Captain's chair, and even touched my cheek softly as it blew past and out the window.

I am the Captain again.
                                                   ~~~~~~~~~~~~~~~~~~~

*The subject of decreasing medications safely and keeping track of it all, calls for another post, which I am looking forward to sharing.


Gentle Hugs....

In the Sea of Pain-- Without A Captain

I am truly alone in my fight with Chronic Pain due to my severely damaged spine.  


For the past seven years, I have had a trusted partner to work with in my search for pain relief.

I have written about the importance of having your Pain Management Physician being your true partner in finding solutions to for your pain.  At the moment, I am floating in the Sea of Pain, without a Captain.  No one to drive the ship, to direct the crew, to give knowledge and ideas.

It is a dangerous place to be alone, this Sea of Pain.  And scary too.

 (Photo credit: arichards63)

After seven years of being guided by my wonderful Pain Management physician, there have been changes in  insurances and medical groups, and because of these reasons, I can not see my trusted pain doctor anymore.  


I'm thrown back into looking again.  Starting brand new.  Kinda rusty at this.  7 years.  Bleh.

Those who have begun their search for a PM (Pain Management) doctor, know that just finding one is the first step, but not the easiest step.  Proximity must be considered, (insurance coverage should be established before the search begins) then physician availability is next.  

Waiting for your first appointment with a PM doctor is expected.  The first visit is important, but this will continue to be an important person in managing your life of pain.  Your LIFE of pain.  **Chronic Pain can be overwhelming to look at, as it has no expiration date, it's a lifetime of management.  

When a relationship has been established with a PM doctor, it hurts to lose that. That takes time, years, seasons.  Things change, life changes over 7 years.  My Dr. and I had an excellent rapport, he was interested, listened, had such insight and understanding, spoke the same language of pain, and most of all: he believed everything I said.  This is an important part of the doctor/patient relationship in any diagnosis, but with chronic anything, the patient must access care frequently, and on an ongoing basis.  

He knew I was a compliant patient, and never called in early for refills, etc.  He was like a psychologist, a psychiatrist, an internist, a spine specialist; and my most trusted partner in the care of my spine.  I trusted him, and he trusted me.

(Photo Credit--By Brocken Inaglory)

He saw me on days I didn't think I could handle anymore pain, anymore depression (that comes with the outlook on the rest of life being this painful) and days I sailed in with a smile.  He knew that I could be both. He expected both.  He knew I didn't have to put on any show, change anything about who I am, I just was me.  Walking in with a bounce in my step and a smile, gave him the relief of knowing that our choices, made together, and guided by him, were working.


He is going to be a tough act to follow.    


Gentle Hugs....

Broken Backs, Strong Women

Frida Kahlo.  A woman whom I admire for her fierceness and strength, her desperation, broken back, her life in pain, and her ability to put her exact situations and deepest feelings onto canvas that spoke loudly to all that see them.   

Frida was in a terrible bus accident when the bus she was riding in was T-boned by a streetcar.  She was  16.  Her spine was fractured in multiple levels, along with breaks and fractures all over her body. The accident changed her life, and she would never be the same again.  She dealt with chronic pain for the rest of her life, and handled it the only way she knew how.  The only thing any of us can do, when our lives are changed by a traumatic physical and emotional event like an accident.

                                 'Broken Column'


This is my favorite painting by Frida.  When I first laid eyes on this, I felt immediately as if I was understood.  She understood.  She understood me-- she painted my spine!  I have said for years that it feels like my spine is crumbling, maybe a rod or some type of scaffolding could give me more stability.  Frida painted her crumbling spine.  The pain is expressed; woman, beauty, strength, vastness, endless, braced, holding on, nails of pain hit the heart, head, thoughts, desires, dreams, lost abilities, loss of trust.  Our bodies betrayed us.  Wrong place, wrong time?  Can it really be that simple?  One moment.  Life changing.

I was in a single vehicle rollover car accident.  I was 16.  The out of control van carrying many young women swayed from side to side, as the driver laughed and yelled, "There's a cat!" (hard swerve) "There's a dog!" (hard swerve the other way) until she saw too many animals and we were on 2 wheels for a moment before we began to roll.  Through a grove of trees, not hitting one.  I was blindfolded the entire time, as this was a pickup of all the girls that had just found out they made the squad for Senior year cheerleader, and the idea was for us to end up at a party to celebrate.  Obvious to say that our van's cargo, did not make it.  

I tumbled in the back of that van, like a shoe in a dryer.  Loose, on the floor, with nothing to hold me down, I freely flew while we rolled.  Me and another gal were the only ones not put in a seat.  We both had neck,  back and lower extremity problems with pain immediately.  It changed both of our lives.

Everything was put into perspective when the firemen said that if the wheelchair lift had not been on the back of the van, the doors would have flown open, ejecting both of us out the back.

The strength found in women, to go on with life after we know our bodies have been traumatized, and will not be the same from that day, amazes me.  We are the nurturers, the mothers, the lovers.  Physically, my body (spine) has betrayed me.  Is betraying me.   It just keeps breaking.  Falling apart.  It is a broken column.  

As my column crumbles, my desire to fight grows.  I have faced (and continue to face) many obstacles because of this great, broken column.  The physical--surgeries, long recoveries, years of various procedures, failed surgeries and trials, tests that show serious and continuing damage, and the pain; And the mental--exhaustion, depression, frustration, anger, while constantly working on coming to terms with a body that is never going to get better. Oh, and the pain.  Also filed under Mental obstacles.

Yet through this, the strength shines.  The desire to survive, to go on, to face challenges head-on and not flee, always wins.  (Yet how temping it is sometimes to run.)  Finding this part of yourself if you also live in pain, should not be hard.  I believe that those who face each day in pain, are some of the strongest I know.  Pain makes us want to do anything that will stop it.  Pain is an awesome foe, it carries such power.  It is here that we have no choice than to steadily grow.

Most of us in chronic pain, know that there are slim to no chances that it will ever go away.  Armed with this knowledge, we concoct our game plan.  How to fight this battle.  Every single day.  Life can be so overwhelming at times without physical pain, and to study how we keep going despite having pain, I find that living with pain bumps us up a notch.  Up to a level of emotional strength that serves to do exactly what we need in our lives.  I think it is nothing short of amazing.

Whether it is a broken back/crumbling spine, or a myriad of other pain causing issues, when there is pain along with the problem, you have experienced that level of emotional strength.  You know what I am saying here. You live it every day too.  Just as I felt touched by Frida's 'Broken Column', by a woman who also lived every day in pain, I hope that I have touched you.

For whether you know it or not, I am your greatest admirer.  




Gentle Hugs....

Are You Prepared to Begin Opiate Therapy?

Dr. Miles' Anti-Pain Pills, Edmonds Historical Museum, Edmonds, Washington. (Photo credit: Wikipedia)

There are many issues to consider when deciding (with your Pain Management Physician) to begin opiate therapy as part of your chronic pain management plan.

Beginning opiates is not to be taken lightly.

It is not as simple as it all sounds.  You will start a new medication that promises to alleviate some of your ongoing, daily pain.  This class of medications can be fantastic in their ability to relieve pain, and can give a pain patient a glimpse of their 'old' life back.

But you first need to look at the entire picture.

After you have spoken with your physician about trying opiates, and of course you are both in agreement, take just part of an afternoon to think a few things over before running to the pharmacy.

CONSIDERING OPIATE THERAPY IN YOUR LIFE~~~

1. Do you have a history of alchohol or drug abuse?
2. Are you being treated (actively) for a diagnosis of Mental Illness?
3. Are you a compliant person?
4. Are you honest about your pain with your doctor?
5. Are you a very patient patient?
6. Are you willing to research and learn about these medications?
7. Are you willing to take on the side effects of opiate therapy?
8. Are you you wiling to stop opiates at any time if necessary?
9. Are you willing to stop opiates suddenly and abruptly?
10. Are you aware of the term Withdrawal Syndrome & what it means?
11. Are you willing to go through the withdrawal off of opiates?
12. Are you strong enough to deal with misinformation and misinformed comments? (Over and over)
13. Are you willing to fight for whatever helps YOUR pain? (Including non-opiate measures)
14. See #5.

I see a total person, a holistic view, in my patients.  A person who has been addicted to any mind-altering substance that caused harm or distress to any part of his/her life, would not be a good candidate for opiate therapy, and hopefully the physician made that call when getting the patient's history.

An actively depressed patient would not be started on opiate therapy. (Possibly when the depression is  treated, as pain can cause depression, and there are many pain patients with a co-morbidity of depression.)

A person with a history of lying about drug use, diverting medication if in the medical field, or anyone who looks at medication for pain as a commodity or a high only, is not the candidate for treatment with opiates.

Your doctor that treats your pain must be your partner in your pain care.  Be honest and forthright.  Docs appreciate candor, and also the educated patient.  Read up on opiates and their side effects.  Know what you are choosing to put in your body.

You must be prepared to possibly sign some sort of pain contract.  You must be prepared to do what your doctor instructs you to do.  (Compliance).  You must be ready to take on the side effects of opiates, such as  constipation (which can become very severe) nausea, tiredness, appetite changes, and others.

You may be asked to stop taking your pain medication.  This is usually after a surgery, to evaluate how the pain is without any painkillers.  In other words, "Did it work?"

You may decide to stay off of pain medication after the surgery if the outcome of said surgery is positive, the original pain is gone, and physically you can 'do' life, because the main cause of the pain has been 'fixed'.

You must be ready to accept whatever your body is going to do.  For instance, I had a large second Thoracic spine surgery.  After recovering and getting past the post-op pain, I stopped opiate use, and was pain-free for quite awhile.  I went to the gym faithfully, it was like I felt years before.  Nothing was needed for pain.

Then the pain started again.  Slowly, slowly.  But it was back, and new tests showed new pathologies in my spine.  Because that was my 2nd Thoracic spine surgery, I chose (and was advised) not to have any more surgeries.  I needed to treat my pain.

I was back in the ring again.  All the holdups with filling medications is reason enough for some people to go all Micheal Douglas (Falling Down) on everyone.  That is nothing.  Nothing.  You need to fight for your right to proper pain relief, in a reasonable amount of time, and that is not always easy to do.  Seems like the system is against those that do have opiates as part of their therapy.  Hard to see a doctor, hard to fill meds on time, hard to be patient while you are experiencing withdrawals (because you are dependent, not addicted) and still you must remain calm and deal with the situation at hand.

It is common to hear the word addicted used incorrectly with the subject of chronic pain patients and opiates.  I have written extensively abut this subject before.  (Addiction, Dependence and Tolerance Parts One and Two).  You must be strong and ready to stand up for yourself, for who you are, what quality of life you want, and how you have chosen to treat your pain.

Above all, you must be patient.  
 


Gentle Hugs......

Related articles

• California Pain Patients Bill of Rights 

Educating the Professionals on Pain

"I totally agree with you that there is an urgent need for education in regards to chronic pain - not just for the community at large, but for the very doctors, specialists, physios and other health care workers who are supposed to be the very ones who should understand our pain, limitations and difficulties better than any others!"

Great comment by one of my longtime readers. Her comment triggered writing on this subject, regarding educating the very ones that should have already been schooled on chronic pain.  The docs, nurses, and other healthcare professionals that are in the profession to help others, to relieve suffering, and to advocate for their patients.

Example:  A new Primary doc visit.  Me: These are the medications I am taking to control my chronic pain.  Doc:  YOU are taking this dose?  Me:  Yes sir, my pain is excellently managed by my pain management physician.  Doc:  YOU are really taking this dose?  Me:  Yes doctor.  Doc:  Would you consent to a urine drug screen?  Me:  Sure, let's do it!  Doc:  I have never seen any patient take this dosage of medications and not be (insert a doctor hanging his arms down at his sides, slumping, eyes at half mast, and kind of limping) like this.  Me:  Well, I have been taking these medications for many years, and I am tolerant to the dose.  Doc:  I have never seen such bright eyes, and even though you are on crutches, you are quite balanced and alert.  Me:  Just give me the cup.

I decided not to have any water.

First time I have been asked for a drug screen, and first time I have been asked for that screen to prove I am really taking what I said I was prescribed, because I 'looked so alert', and 'my eyes were so bright'.

When I related all of this to my Pain management physician of over 8 years, he smiled and said, "I guess he doesn't have many chronic pain patients, eh?"  We giggled about it, and he said how many times he has heard that, always surprised that GP's, Family Practice, or Internists do not seem to either SEE CP patients, or just do not treat them, therefore they stay away from the pain meds and act all bent out of shape when they hear what a specialist has done to help alleviate the pain.

How many times have we chronic pain patients had to visit the ER?  Never a good visit.  Never.  How many times have you been told:  "Oh, we don't prescribe that here, we are not going to give you any pain meds, we will treat your withdrawal symptoms, (even if with a medication I do not want to take), but we can not give you anything for the pain."

I am sure we all have some awesome Emergency Room stories.  It is there that I believe the education has to start regarding patients in chronic pain, who take medications for said pain, who are left without medication for days while the insurance company takes its time with authorizations, etc.  The ER is the first line of defense and I am very aware about the nurses and docs running with the joke about the 'drug seekers'.  I get it.  I have seen both sides.

When a person that lives in pain is seeking help, and truly has prescriptions for a medication(s), WHY do we have to go through so many hoops?  WHY are we made to feel like a flippin druggie?  WHY do some of the staff act like we are the most horrible thing that ever walked into their workplace?  WHERE is the empathy?  But most of all, WHERE is the professionalism?

When did judgement become a course in medical training?

Below is an excerpt from the internet for a Pain management physician who practices in Southern California.  I must give it to him for the kindness and openness with which he states his practice philosophy.

      
Welcome-
We don’t just treat pain. We’re also doing everything we can to change the way people think about pain and wellness, working to dispel the myths, misconceptions (and prejudices) that surround chronic pain. I believe that chronic pain is a serious medical condition and I alway treat my patients with the dignity and respect they deserve. You will never be labeled a “drug addict” in my clinic. 
Dr. K.


I would love to hear about your experiences with this subject!!



Gentle Hugs.... and Stay strong ~just for today~

Spine, Ribs & Knee-Oh My!

The month of January was like a big storm that just wouldn't pass.

Early in the month, I fell off a chair with no back, flat on my spine onto the concrete, taking my entire weight straight onto the spine, and posterior ribs.  I didn't feel anything from it until the 2nd morning.  And Oh My God it wasn't good when I did wake and feel that fall.

Between many other things going on in life; I wasn't able to get an Xray, and I kept on doing way more than I should have.

After a couple of weeks, I was still hurting in the spine and posterior ribs.  One thing about Chronic Pain that I find extremely interesting, is that those of us with constant pain tend to not seek treatment as fast as we should, mainly because we are so used to pain, and don't run to the doctor every time we hurt.

But this was different pain.  ACUTE pain, not related to the other spinal issues that cause pain, but exacerbated the 'normal pain' many times over.  

Near the end of the month, I was getting up from the floor, trying to carefully pull myself up by using a chair, put all my weight onto my right leg, and was stepping up; when...POP!!  The sound was horrible, loud, and deep in my knee.  The same knee that was injured severely in the rollover accident in 1976, the same knee that needed a huge surgery (4 in 1 Patellaplasty)  in my senior year, the same knee that needed surgery again in 2002.

When I was seen at the ER, the Dr. braced the knee, and told me to use crutches.  There were no breaks, the knee had severe swelling, and an unknown injury that requires an MRI, and an Orthopedist.  Gone are the days of going to the ER and getting what needs to be done to diagnose an injury, as in an MRI.  If something is a non-life-threatening emergency, but still needs immediate attention; then get used to waiting for any type of medical care.

So, picture a person who suffers from Chronic Pain in the spine, falling hard onto said spine, possibly cracking vertebrae, and further herniating the 12 Thoracic levels already herniated, most likely breaking ribs, and right on that injuries tail, dealing with another acute injury causing acute pain, and to top it off, on crutches.  Not a good situation for me.

I am waiting for the authorization to go through for the MRI, and to see an Ortho.  In the meantime, the same 'old' spine pain must be addressed; there is no rest for the injured, the hurting.  And add acute pain on top of chronic pain, and you get a very messed up body.

As usual, I try to stay as positive as possible, and I am thankful for those in my life that truly care, who are there when the chips are down.

I am writing the next post that is about the URGENT NEED FOR EDUCATION regarding Chronic Pain.

The ever-judging, always-right, extremely close-minded and still uneducated idiots never cease to amaze me....I am amazed at the positive way I am able to think without allowing those jerks to get to me.  It still makes me sad, for I know that I am not alone in my journey of pain, and the resulting ridicule, judgmental attitudes, etc., will continue to exist; my empathy is with you all who also deal with this very unnecessary part of our life in pain.
 

Gentle Hugs.... and Stay strong ~just for today~