Living with Severe, Chronic Pain: Part One

Today I'm starting my teachings on "Living with Severe, Chronic Pain.  This is Part One:



Introduction:

Living with pain isn't easy.  The medical community usually describes pain as being either "acute" or "chronic".   Acute pain begins suddenly and is usually sharp in quality. It serves as a warning of disease or a threat to the body. Acute pain might be caused by many events or circumstances, including  a broken bone, surgery, burns/cuts, or even dental work.  It might be mild and last just a moment, or it might be severe and last for weeks.  In most cases, acute pain does not last longer than six months, and it disappears when the underlying cause of pain has been treated or has healed. Unrelieved acute pain, however, might lead to chronic pain.  Chronic pain " is a pain that is present over 90 days and which can be continuous or intermittent".  Common chronic pain conditions are arthritis, TMJ, back pain, headaches, etc.  

However, I'd like to introduce you to a new way of describing pain, that severe pain that may have you in your bed in agony, unable to work or enjoy daily activities.  It affects your sleep, your relationships and probably has you on some type of strong pain medication...it is called "Intractable Pain" (hereafter referred to as "IP").  I came across this term when I was looking for help for my own ongoing, chronic severe pain.  I had been on just about every pain medication, narcotic or pain patch that was out there and was looking into a pain pump or some other way or dealing with my pain.  I hated the way the pain medication dulled my senses, caused me to be irritable (as if being in pain doesn't make you irritable enough!), and often affected my sleep.  They made it hard to drive safely, keep up with daily chores, and overall, made me feel worse.  Sure they helped dull the pain but the medication side effects were often very bothersome and made me feel horrible.  While on my journey to find pain relief, I came across this IP term, when I read material written by Forest Tennant, MD, DrPH.  While it wouldn't give me pain relief, it gave me tools and information that really helped.  I'd like to share some of those ideas/tools with you as well as tell you about my journey with pain management as the days go on.

When I read that material about IP, I felt like I was reading about "me", and that the suffering and pain I'd been dealing with wasn't because, as I was told by one doctor, because I have "a low pain threshold", or as another doctor so bluntly put it, I just needed to lose weight, exercise and push past the pain.   IP has hounded me for the past 10 years, where prior to that I was living with chronic pain for 8-9 years.  I believe I progressed to IP because I didn't know what was wrong with me and just went from doctor to doctor looking for help.  As time went on, the pain "stuck" and the times of pain relief were shorter and shorter until I reached the point where I was in pain 24/7 and had to close my counseling practice.

What I want to pass on here is not only my own personal experience with pain and the treatments I have tried (some were successful, some were a dud and some made me feel even worse), but also some pointers on living with, and hopefully getting beyond, IP.  I am not a medical doctor and cannot promise you pain relief, but I can pass on to you what I have learned as layperson who has first-hand experience living with pain.  For me, my pain has gone from IP to manageable pain (I'll explain more about that change later on in another post), and my prayer for you is that you, too, can regain some quality of life and feel empowered over this "thing" that has so drastically changed your life.   

Chapter One:  The Implantable medical devices that are helping me:

Before I continue talking about intractable pain, I'd like to share with you information about the medical device that has helped me regain some of my life.  I'm no longer bed ridden, can now drive my car for 30 mins. and have been able to resume some of my housekeeping.   It has also allowed me to start this blog as before this I was lucky if I could sit at a computer for more than 10 minutes.  I can now sit at a computer for about 45 minutes.

I know information about the different types of pain and how to live with it is valuable, but then there's a time when we just want the pain to STOP or at least have a break from it and I believe these devices can possibly do that for you.  What has helped me tremendously was being implanted with two Spinal Cord Stimulators.  I have had the Spinal Cord Stimulators in me for over a year now (for more info. on SCS's see: http://www.bostonscientific.com.  This was the company who made the implants my pain mgmt. dr. used).  There are other companies that make these medical devices but he prefers this one.


Below is an image of what a spinal cord implant can look like, courtesy of Nucleus Medical Media. In order to make the image large enough to be viewable, the resolution isn't that great...sorry. (newbie here when it comes to inserting photos/images).


I have two of them, one for lumbar pain and one for cervical pain.  The leads for the lumbar stimulator are attached at T-8 and the leads for the cervical stimulator are attached at C-2.  However while they cover up a good bit of my pain, there's still some areas that these just can't reach (they're strictly for nerve caused pain), and so I've been referred to a 2nd pain mgmt. dr. as my current one specializes in implanting these stimulators.


For a good forum on folks who have these stimulators or are contemplating getting them go to:  http://neurotalk.psychcentral.com/forum118.html.

Chaper Two:  My journey and struggles with chronic, severe pain:

After giving this topic much thought, I've decided that we need to go over some basic things before we get into the discussion of living with Intractable Pain.  First of all, I'd like to give you a little background on myself and also enlighten you as to why the medical community seem to oftentimes not be very helpful.

I understand what it means to live with chronic pain.  I now have my two Spinal Cord Stimulators that I have previously discussed.  Prior to receiving those, I had five back surgeries, a lumbar fusion at L5-S1, two cervical fusions at C5-6 and C6-7 (done at different times), as well as having peripheral neuropathy and some type of yet to be diagnosed connective tissue disease.  It all started for me in my mid 20's, so I have been living with chronic pain for  many years.

I'm sharing this to let you know that I understand your pain and the frustrations, the many questions you have and, if you're like me, you've lost track of the number of  different doctors you've seen along the way.  It wasn't until I came across the term "intractable pain" that I began to understand what was going on with me and why I had had such a hard time dealing with the medical community.  I hope that this gives you some insight and useful information so you better understand why the medical community can be so hard to work with.

For starters, when you first see a dr. they are taught that they have to do some kind of evaluation on you.  They want to determine how intense your pain is, how it's affecting your quality of life, how it's affecting your daily functioning, how it's affecting your mood, all the while looking for any "addiction" you may have developed.  Unfortunately most doctors have not been trained to do proper pain management, and therefore are very reluctant to give you the help you need.  That is why I highly recommend finding a good pain management doctor.

While there is a small percentage of the chronic pain population that have, unfortunately, become addicted to pain medications, it is more the exception than the rule.  What under-educated doctors don't realize is that when a patient asks for more pain medication it can mean either their disease has progressed and the current dosage isn't working anymore,  or they're just simply under medicated (the technical term for this is "pseudoaddicton").  Many doctors are worried about giving medications in case you become an "addict", and usually want to stay with such drugs as Tylenol, Aleve, or Vicodin if you're lucky enough to get one who wants to give you some good pain relief, but they're hesitant to go beyond that point.

  

What they don't understand is that your continued asking for more medication could very well be a sign you're not being properly treated.  They don't understand that it's better to keep your pain medication at a steady rate in your body so you don't experience "break-through" pain.  They are so concerned about the possibility of you becoming addicted that they allow you to reach  break-through pain, and then they give you medicine to deal with the pain, rather than keeping the medicine at a constant level, 24/7.  And, yes, you will develop physiological dependence upon the medication but that is entirely different to being "addicted".  Your body will become dependent upon the medication for pain relief, not because you want to get high, but because it can take some tinkering for  the doctor to discover what medication you specifically need and at what dose.  And as the dosage is adjusted your body will be developing a tolerance to it until you and your doctor find the optimal dose for you to remain as pain free, 24/7, as possible.

One of the reasons pain pumps are popular is because they can deliver the medicine you need for pain relief in much smaller doses over a 24 hr. period and you don't experience quite the side effects as you would had you taken that medication orally.  Spinal cord stimulators are meant to block the nerve signals going to the brain, so that while you still hurt, your brain isn't receiving the pain signals and you can oftentimes get off medication all together, with the assistance of your doctor, of course.

The World Health Organization has what they refer to as 3 levels of analgesia.  Level one is for mild to moderate pain and they use medications such as NSAID's and Tylenol.  Level two is if the pain persists or gets worse, then they usually offer a NSAID, or Tylenol with an added opioid.  Level three is for moderate to severe pain, and this is when they go straight to using an opioid to help with the pain.

The "Chronic Pain Treatment Continuum" usually consists of these four steps:
Step one:  physical therapy and over the counter medications.  Step two:  TENS, NSAID's, Nerve Blocks and Psychological therapy.  Step three:  Opioids and Thermal Procedures.  Step four:  Neuromodulation, Implantable Drug Pumps, and Surgical Intervention.

Unfortunately many doctors start every one off at level one for their pain rather than treating the degree of pain that the patient is experiencing.  And this can be why it's so frustrating getting the pain relief you're seeking and why doctor's wrongly draw the conclusion you're a "drug seeker".  Again, even more reason to see a good pain management doctor because he/she should be able assess your individual situation and give you the proper pain control that you need.

If after you and your doctor find the optimal dose that is helping you and suddenly you find it's not helping the way it used to, it may mean one of five things:  (1)  you may have developed a new problem somewhere else that needs to be investigated; (2) you may be experiencing secondary pain due to increased or excessive physical activity and may need to slow down on what you're trying to do; (3) you may be experiencing some drug interactions; (4) you're not taking the medication the way you're supposed to and it's not maintaining a steady rate in your body or (5) you are experiencing hormonal issues as a result of your ongoing pain.

I know that most people think of women when they think of hormonal issues.  However, a hormone is defined as a compound which is produced in a body organ and secreted into the blood stream to perform some physiologic function.  Men, also produce certain hormones.  According to Dr. Tennant, "Undertreated severe, chronic, and intractable pain depletes many hormones."  You can find his article at: http://www.practicalpainmanagement.com/treatments/hormone-therapy/hormone-treatments-chronic-intractable-pain .  If you experience any of the five things mentioned above, you may want to see your doctor to discuss what may be going on and possibly get further relief.

Keep in mind that not all pain responds to opoids.  Other drugs that may work better are: tricyclic antidepressants, nerve blocks, anticonvulsants, or if nothing else works, surgery of some sort may be needed.  Again, I cannot impress the importance of working with a doctor who has a vast array of different possibilities he/she is willing to investigate with you.  Don't feel like you've got to live with your pain until you've exhausted all possible options.

Once you've exhausted all your options and the medical community has done all they can do for you, and you still find yourself in pain, then it's time to learn how to live with Intractable Pain.  We'll discuss that in more detail next time.

Chapter Three:  Acceptance and Strategy:

I've been told that I have no choice now but to learn how to live with Intractable Pain (IP).  I had gone to see a second pain management doctor in a last ditch hope that he'd have some answers.  A couple of months ago, my first pain management doctor had given me some medical botox shots in the areas of my upper back/shoulders that continue to cause me a lot of pain.  The relief one gets, while temporary, is to last about 3 - 4 months, so one has to return periodically for more shots.  Unfortunately, it turns out that I'm in that small group of people who don't tolerate botox and I've actually been hurting worse since getting the shots!  This new doctor says that I need to give it another 6 weeks or so until most of the botox is out of my system and then I should be back to my "pre-botox shot" pain level.  Needless to say, I am very disappointed.  I had put a lot of hope into those botox shots reducing my pain enough so that I could at least resume some low stress physical activities.  I was so looking forward to just riding my bicycle again and possibly taking up swimming at the local indoor swimming pool.  But, it's not to be.

   

 While I'm so grateful that I have these two Spinal Cord Stimulators and the pain reduction I have gotten from them, I was hoping for more pain improvement.  This new doctor told me that he has nothing more to offer me, and given my sensitivities to the typical pain medications the medical community uses, I am going to have to learn to live with the pain and just resort to  strong pain medication periodically when I get to the point where I just can't take the pain anymore.  I've always referred to this as my "I've taken my medicine, I'm going to bed for several days, so leave me alone as I'm going to sleep through this if I can" cycle.  The world gets shut out, I go to bed, and my family only sees me again when I'm able to resume life.. when I've gotten to a "lesser" pain level.

So I'm faced with having to accept my plight.  I've struggled with "Why me, Lord?" and I know that is a normal reaction many of us have.  I sometimes get caught up in trying to analyze what I could have or should have done differently every step along the way, through these many  years, which usually leads to me feeling depressed and discouraged on top of being in pain.  So acceptance and coming up with a plan to live with this seems my only option left...it's either that or I can just cry a lot and become caught up in a life of dejection and misery.  But I trust my Lord and I'm not going to let that happen.  I'm going to continue to fight this enemy called "pain",  but I have to have a plan on how to fight back and hold my own.  I'm sure I'll fall down at times, but I can't focus on that right now.  I have to focus on accepting this and developing an attitude that it's not going to win.

Dr. Tennant's article says that the hardest thing for people with IP is to stop denying that they are in such pain.  This can be compounded by others saying "but you look okay" or "it's all in your head".  Intractable pain isn't always noticeable to others, and even family members can struggle with your being in pain.  Someone who has an obvious scar or limp, or is using a wheelchair or crutches tend to illicit compassion from others, but if they can't "see" that something is wrong with you, then it's harder for them to understand.  But it is vitally important that you accept your plight and manage your pain the best you can.  Otherwise the pain can drive up your pulse rate and blood pressure, keep you from sleeping, alter your hormone levels and may do further damage to nerves and other body tissues that are already damaged.  Your attitude about pain must change, because when your pain flares up, it affects your pulse rate and the hormones stored in your adrenal glands flood your system, which can cause further body deterioration and aging.

You must do whatever it takes to suppress your pain and prevent flare-ups.  Keep your pain as controlled as possible...don't skip your medication because you feel a tiny bit better or are just tired of having to take it...remember to keep your pain medication at a constant level in your body.  We often try to just tough it out, but that does not work and certainly isn't helpful when one has IP.  Once we accept our condition, we need to begin to consider our pain as our enemy and develop a  positive attitude of hope and survivorship.  Dr. Tennant reminds us that medical research advancement is happening every day.  People who once lived in misery, have now been able to reach a manageable pain level due to breakthroughs in medicine and surgical procedures.  Who knows what the future holds in way of pain management, as pain management itself is a relatively new field.  In the meantime, focus on developing a strategy to help you deal with your pain.

Chapter Four:  A letter for those who don't understand your pain:


One of the items you can use in having a strategy to help you deal with your pain is to find a tool you can use to better educate friends and family as to what you deal with on a regular basis.  I was reminded about a handout I have when I was at the doctor's office today.   I noticed an elderly gentleman who was obviously in pain and was wanting to talk to his daughter about it.  I couldn't tell from looking at him what his medical problem was, and I noticed others in the doctor's office getting frustrated at his wanting someone to talk to.  I thought that if he had had this to give to his daughter that it might have helped her better understand his predicament.  I'm sorry I cannot give the author credit as I really don't remember where I got it, so hopefully I won't get myself into legal trouble by duplicating it here :)  Feel free to copy it and hand it out to friends/family if you think it would be helpful.

Living with Chronic Pain

"Having chronic pain means many things change, and a lot of them are invisible.  Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.  In the spirit of informing those who wish to understand:  These are the things that I would like you to understand about me.

Please understand that being sick doesn't mean I'm not still a human being.  I have to spend most of my day in pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body.  I still worry about things, my family my friends, and most of the time, I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy".  When you've got the flu, you probably feel miserable with it, but I've been sick for years.  I can't be miserable all the time.  In fact, I work hard at not being miserable.  So, if you're talking to me and I sound happy, it means I'm happy, that's all.  It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things.  Please don't say, "Oh, you're sounding better!" or "But you look good".  Understand that I am merely coping.  I am sounding happy and trying to look normal.  If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't mean that I can stand up for twenty minutes, or an hour.  Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today.  With a lot of diseases you're either paralyzed or you can move.  With this one, it gets more confusing every day.  It can be like a yo-yo.  I never know from day to day, how I am going to feel when I wake up.  In most cases, I never know from minute to minute.  That is one of the hardest and most frustrating things of my having to live with chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable", and so on...it applies to everything.  That's what living with chronic pain does to you. 

Please understand that chronic pain is variable.  It's quite possible (for many, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the rest room.  Please don't remind me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!"  If you want me to do something, then ask me if I can.  In a similar vein, I may need to cancel a previous commitment at the last minute.  If this happens, please do not take it personally.  If you are able, please try to always remember how lucky you are, to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and often can make me seriously worse.  You don't know what I go through or how I suffer in my own private time.  Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct.  If I was capable of doing some things any or all of the time, don't you think that I would?  I am working with my doctors and I am doing what I am supposed to do.  Another statement that hurts is, "You just need to push yourself more, or try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas.  Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine.  Not to mention the recovery time, which can be intense.  You can't always read it on my face or in my body language.  Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly?), but my chronic pain is not caused by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take my medication, that probably means that I do have to do it now...it cannot be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something.  Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't.  It's not because I don't appreciate the thought, and it's not because I don't want to get well.  This isn't true.  In all likelihood, if you've heard of it or tried it, so have I.  In some cases, I have been made sicker, not better.  This can involve side effects or allergic reactions, as in the case with herbal remedies.  It also includes failure, which in of itself can make me feel even lower.  If there were something that cured, or even helped with my form of chronic pain, then we'd know about it, unless it's something that's just recently been discovered and implemented by the medical community.  Then, I'd be interested in hearing about it.  There is worldwide networking (both on and off the Internet) between those of us with chronic pain.  If something worked, we would hear about it.  It's definitely not for lack of trying.  If, after reading this, you still feel the need to suggest something, then so be it.  I'll politely listen and consider it, and if it sounds like it may possibly help, I may take what you said and discuss it with my doctor.  Please don't feel bad if I say I've already heard about it or tried it.  Just leave it at that.

If I seem touchy, it's probably because I am.  It's not how I try to be.  As a matter of fact, I try very hard to be normal.  I hope you will try to understand.  I have been, and am still, going through a lot.  Chronic pain is hard for you to understand unless you have had it.  It wreaks havoc on the body and the mind.  It is exhausting and exasperating.  Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability.  I ask you to bear with me, and accept me as I am.  I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you...people who are not sick.  I need you to visit me when I am too sick or in pain to go out.  Sometimes I need your help with the shopping, the cooking or the cleaning.  I may need you to take me to the doctor or the store.  You are my link to the "normalcy" of life.  You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening.  It really does mean a lot to me!"
 
 
Chapter Five:  Make an inventory of your pain triggers

The second part of your strategy, now that you have educated your family and friends on what's like to live with chronic pain, is to identify your pain triggers.  Pain triggers are those physical and mental activities and events that cause your pain to flare or become worse.  Even though you are aware of some, start writing them down and keep a list.  Every time you discover something new that causes increased pain, add it to your list. 

Keep this list close by and refer to it often as a reminder of what your limitations are.  This will help you to stop the pain before it gets worse as people with IP  often push themselves beyond what they know is good for them.  If they feel a decrease in their pain, they feel it's a good time to make up for things that they had not been able to do, and usually end up worse off than when they started!  For example, in your list of pain triggers be honest and  detail such activities  as:  how long you can sit in one place, how long you can stand, how long you can do housework or chores, how far you can walk, how long you can spend at the stores shopping, how long you can work at the computer, how far you can drive or how long you can work.  
 Then whenever you are doing these activities, stop yourself before you push yourself beyond your comfort level so that you do not increase your pain.  It is better to break down something you need to do into smaller increments, and taking a break in between, rather than doing it all at once and then possibly spending the rest of the day in bed because of increased pain. Since I know I can only sit at the computer for short periods of time, I set a timer and when it goes off, I get up, walk about and do something else that doesn't require the use of those parts of my body that get hurting worse when I sit at the computer too long.  Then I  simply come back later and continue my writing.  I do this several times while I'm writing this blog for you, because if I don't I will most certainly pay for it later!

Also look at your relationships as possible pain triggers.  Do you find you have increased pain after feeling tired, anxious, depressed or angry?  Do arguments with others make you worse?  Does being around others during the holidays, at parties or family reunions run you down and make you worse? If any of these do cause problems for you, then come up with a way to deal with them before they trigger increased pain.  You may have to learn to walk away from situations that will trigger more pain for you and tell the person you'll continue the conversation later as you need to take a break for a while before the pain gets worse.  Hopefully they'll understand your need for a break and you can resume the conversation later, when you feel up to it.  You may even want to let friends or family know beforehand that you can only socialize for so long and that you'll need to go rest for a while as you don't want to overdo things.  

My husband knows that stress and anxiety is a big pain trigger for me, so he's learned that when I say "I can't talk about this anymore right now" it means that it's causing me a pain flare up and that we'll have to get together later to finish discussing it, and that may mean the next day.  I'll admit it took a few times before we were able to fully implement this as it's hard to walk away from a heated discussion, but I came to find out the hard way that if I don't recognize my limits and stick to them, then I'm headed for a flare up and nothing gets accomplished other than me being in bed for a while.

Does the weather affect your pain...do you feel worse when it's cold outside or possibly when it's hot and humid?  If so, take precautions when you know the weather is possibly going to affect your pain level.  If the weather is going to be too cold or too hot for you, then plan ahead and stock up on food or other items you may need.  Plan on not being able to go outside if necessary and don't be embarrassed to ask other for help if you need it.  We certainly don't want you out there shoveling show if you're already in pain!   Thinking things through ahead of time and getting things in place can be a big weight off your shoulders.

Another big trigger for me is driving.  I often wondered why I could go into town and do errands for a few hours and come home in less pain than if I just drove straight for an hour.  One day I decided to take note of what I actually did when I went into town to do errands. By the end of the day I noticed a pattern:  I walked around the stores as much time as I'd spent driving into town and then driving from store to store.   What I'd discovered was that I need to walk to keep my back loose and that meant I can really only drive for short periods of time before I need to get out and walk.  So, since realizing that, when I need to drive for longer periods of time I purposely have to add in time to stop several times to just get out and walk around for a while.  Then I get back in the car and continue driving to my destination.  It can be tricky, especially in the Winter with the snow, so I've had to learn to plan ahead on the route I'm going to take so I know when and where I'm going to stop to get out and walk.   It's meant adding extra time to the trip time, but I've found I feel better when I eventually get to my destination.

The point in identifying your own personal triggers is to help you plan your daily activities so you can get things done and feel productive without pushing yourself to the point where your pain flares up and you're not able to do anything until it calms down.  Only you know what you can do and you need to communicate this information to those in your life that this affects.  For example, if your wife wants you to go shopping with her, let her know up front that you want to but you know from past experience that you can only walk for 30 minutes before you begin to really get sore, so you'll wait for her on a bench in the mall while she shops and then you can have lunch together.  Don't feel bad that you can't do what "normal" people can do...focus on what you need to do for YOU and part of that is keeping your pain at the most manageable level possible.  You'll be surprised at how creative you can be so that you will be able to do those things in your life that are important to you without pushing yourself beyond the point of manageable pain.  So, get started on your list when you feel up to it, and remember to add to it as time goes by and you notice additional pain triggers.