A tip on the teachings than can be found here...

For those of you who are viewing this blog for the first time:

"Living with Chronic Illness: Part One"-- Chapters 1 and 2 are my own struggles with chronic illness and how it has dramatically changed my life. Chapter 3 looks at how we can try to live like "normal" people.  Chapter 4 discusses how our emotions can change due to the challenge of living with chronic illness. (Found under July's teachings)

"Living with Chronic Illness: Part Two"--Chapter 5 has us look at how our chronic illness can affect our loved ones.  Chapter 6 gives tips/ideas on how to keep working when dealing with chronic illness. Chapter 7 gets us to discover if anything good can actually come out of being chronically ill. (Also, found under July's teachings)

"Living with Severe, Chronic Pain: Part One" -- The Introduction section helps the reader to get a better understanding on how the medical community looks at chronic pain and introduces a new perspective on looking at chronic pain.  Chapter 1 is where I talk about the implantable devices Boston Scientific's Spinal Cord Stimulators) I had put in to help me deal with my severe, chronic pain.  Chapter 2 looks at the difference between being "addicted" to medicine, as opposed to being on the correct regimen one needs in order to keep their pain manageable and live with some quality of life.  It also gives some good information on finding the correct pain medication for your situation.  Chapter 3 discusses the necessity of those living with severe, chronic pain to develop a plan in order to make their situation more manageable in order to minimize the impact their pain is having on their daily lives.  Chapter 4 is a letter that you can give to others who don't understand your situation and how pain affects your life.  It has been very helpful for people to give to family members/friends so that they get a better understanding of what it's like to live with severe, chronic pain.  Chapter 5 has you identify what your own particular pain triggers are in order to devise a plan to minimize them and to help you get your pain more manageable so it doesn't impact your life so much. (The beginning of the teachings in August)

"Living with Severe, Chronic Pain: Part Two" -- Chapter 6 is where you put together your plan on how you're going to minimize your pain triggers and some other helpful tips on decreasing pain. Chapter 7 looks at the importance of controlling your pain as it can cause other secondary health conditions.  It also discusses how to have a better discussion with your doctor when talking about your pain and how you can help him/her have a better understanding of how it impacts your life on a daily basis.  Chapter 8 looks at medications that may help you deal with your severe, chronic pain and how your doctor has probably been trained to view pain medications and why he/she dispenses pain medication the way they do.

"Living with Severe, Chronic Pain: Part Three": -- Chapter 9 is about living as a person of faith who has severe, chronic pain and the challenges it can bring and how God is there to help you.

"Living with Primary, Immune Deficiency" -- talks about the rare genetic disease that I was finally diagnosed with, and gives someone with this diagnosis tips/insights on what I discovered as I went through my journey from diagnosis to treatment.

"Inspirational Readings" -- which can be found on the right hand side of this blog under the "Pages" heading, are readings that I have discovered that have personally helped me when I'm struggling with being ill and in pain.  I share them in the hope that others may also find inspiration in them.

Also note that I have written two other blogs, which can be found on the right side of this blog under "My Blog List." 

A great website for those with chronic illness and pain......

As of today, I'm now a contributing author to a website for those living with chronic pain and chronic illness.  You can read my first article, dated August 7, as well as articles written by others here or at:http://restministries.com/category/devotionals/

P.S. Being licked by a bunch of puppies is a good antidepressant!

Living with Primary Immune Deficiency

Introduction:

Primary Immune Deficiency (hereafter referred to as "PID"), is a little known and under recognized chronic medical condition  that can go undiagnosed, or wrongly diagnosed for years, even decades.  I wasn't diagnosed with it until my late 40's.  I had been told for many years that I had other conditions instead.  Fortunately they are now starting to test newborns for this disease as medical professionals are becoming more aware of it.

Most people, unfortunately, are not diagnosed with this until they reach their later years, unless they're very, very ill and are hospitalized frequently.  Most of us who have it have struggled through life, dragging ourselves to work, wondering why we get sick so easily, and so often.  We encounter problems at work due to missed days, we feel awful so our productivity can suffer and we go along the whole time with this nagging feeling that something isn't quite right, even though our doctors say there's nothing they can really pinpoint.  Since the symptoms can be so varied and so differing in intensity, it is easy for an untrained doctor to misdiagnose someone with something else.  Many have been diagnosed with chronic fatigue, chronic sinus problems or recurring bronchitis.  In reality, these are all part of the medical condition called Primary Immune Deficiency.  To make diagnosis even more complicated, there's more than one type of Primary Immune Deficiency, and to the extent that you have it, decides whether you'll receive treatment for it (of course, the insurance companies can play a role in the decision also, as treatment is very expensive).  A very good website for information is http://primaryimmune.org/

What I'd like to do as time goes on is relay to you my experience with being ill for so many, many years, how I was finally diagnosed, and how the treatment I have had to be on has not been without its difficulties.

Chapter One:  What are Primary Immunodeficiency Diseases?

I think the first step is to become better educated.  With this in mind I'm going to make today's installment on giving you educational material so that you can better decide if PID is something that you or a loved one may have.  The following is the description of PID from the Primary Immune Deficiency's website: 

 "Nearly everyone has suffered from colds, the flu, or sinus and ear infections. Just as many have been affected by cuts, scrapes and abrasions that become infected. Even in the case of more severe infections – such as pneumonia – we expect the cough and congestion to ‘run its course’, aided by prescription antibiotics, over-the-counter symptom remedies, and our body’s own immune system.

Recovery times vary, but the human body can usually rid itself of the infection-causing germs, and work to defend against future “bugs” and viruses. There are, however, instances in which the body cannot recover, and some of these apply to individuals with a primary immunodeficiency disease.

Primary immunodeficiency diseases occur in persons born with an immune system that is either absent or hampered in its ability to function. While not contagious, these diseases are caused by hereditary or genetic defects and can affect anyone, regardless of age or sex. The World Health Organization recognizes more than 150 primary immunodeficiency diseases – some are relatively common, others are quite rare. Some affect a single cell within the immune system; others may affect one or more components of the system.

And while the diseases may differ, they all share one common feature: each results from a defect in one of the functions of the body’s normal immune system. Because one of the most important functions of the normal immune system is to protect us against infection, patients with primary immunodeficiency diseases commonly have an increased susceptibility to infection.

The infections may be in the skin, the sinuses, the throat, the ears, the lungs, the brain or spinal cord, or in the urinary or intestinal tracts, and the increased vulnerability to infection may include repeated infections, infections that won’t clear up or unusually severe infections. People with primary immunodeficiency diseases live their entire lives more susceptible to infections–enduring recurrent health problems and often developing serious and debilitating illnesses. Fortunately, with proper medical care, many patients live full and independent lives."

If you would like a more in-depth discussion on the various types of immune deficiencies, go to this link:  http://primaryimmune.org/about-primary-immunodeficiency-diseases/types-of-pidd.  This link has  too much information to relay to you,  but you'll find it important to go and read if you suspect PID.

I hope you find this information helpful.  Now that you have read about PID and become better educated, I will discuss what I, personally, had to go through to get diagnosed and to receive the proper treatment I needed.

 

Chapter Two:  How I was diagnosed:

It took me a long, long time to get diagnosed.  Before being diagnosed, I had 8 sinus surgeries culminating in a bilateral frontal sinus obliteration because they just couldn't get the infection out of my upper front sinuses, especially the left one.  My Ear, Nose and Throat doctor (hereafter referred to as "ENT")  was afraid that the infection was going to get into my brain being that the frontal sinuses are so close to the brain barrier, so we opted to go for the frontal sinus obliteration.  Believe me, that was NOT a nice experience!  

My ENT had always wondered why I got so many sinus infections even though he had done so many surgeries that he said my sinuses were "wide open and should drain like a sink".  I counted one time and I had 24 sinus infections in three years!  As I look back on it, I believe it was a constant infection that would just get knocked down with the latest round of antibiotic (the only thing that worked was Cipro), and then it would gradually re-establish itself.  My ENT told me later that bacteria can actually get into the sinus bone and it's very hard to kill, so it was probably just knocked down to re-grow later.  The purpose of the frontal obliteration was to get rid of my sinuses and now I haven't had another sinus infection.  To read more about bilateral frontal sinus obliteration go here: http://uwmedicine.washington.edu/Patient-Care/Our-Services/Medical-Services/Otolaryngology-Head-Neck-Surgery-ENT/Pages/ArticleView.aspx?subId=212

I also had bronchitis many times, and even when I didn't have what was considered to be diagnosable as "bronchitis", my chest always felt like it was on the verge of going into bronchitis.  This baffled my family doctor because he'd listen to my chest and he said I sounded fine.  However I knew something was just not right.

How did I finally get diagnosed?  Just prior to going in for my frontal sinus obliteration, my ENT decided that enough was enough and that there had to be something "not right" with me, given my many sinus surgeries and infections, and my feeling bad all the time.  He suspected there was something wrong with my immune system and sent me to an immunologist for testing.  When I got there they explained the procedure for seeing if my immune system was working properly.  They'd take some blood from my arm in order to establish a base line, which they did.  Then I got two shots:  a tetanus shot and a pneumonia shot.  I was told to return in one month.  When I did, they took more blood in order to see whether my body had mounted a response to the tetanus and pneumonia shots I had previously received.  It turns out that my body did develop antibodies to the tetanus shot but did nothing to try to fight off the pneumonia shot.  I don't understand all the technical details of what else they looked into when they did all my blood work, but it ended up with me getting the diagnosis of Primary Immune Deficiency. 

 I believe I mentioned earlier that there's many types of PID, and the diagnosis I was given  was "Combined Variable Immune Deficiency" (CVID).  I won't go into detail here on what that specifically means because I believe the Primary Immune Deficiency website I gave you earlier gives a much better and more thorough description of describing all the different types of PID. Here's that website address again:  www.primaryimmune.org.  I was rather shocked to get this diagnosis but it did answer a lot of questions about why I always felt so bad. 

 One of the other symptoms I've always had is extreme fatigue, and while my immunologist doesn't feel it's a symptom of PID, many folks on the PID forum  (http://idffriends.org/forum) also complain that it's one of their problems, also.  And it would make sense to feel tired a lot, if your body is trying to constantly fight off an infection that it cannot.  I've been on treatment for about 4 1/2 years now, and I still struggle with fatigue, although it's not as debilitating as it used to be.  For a long time I spent a lot of time in bed, could hardly get through the day I was so tired, and ended up having to go on disability because I couldn't continue to work at my private practice.  Now,  I still struggle with fatigue but as long as I can take a nap in the afternoons I don't feel as bad.  However, I'm not at the point where I can go back to work.  So I spend my day doing a little bit of work on my blog, do a little housework, cook dinner for my husband and always take my afternoon nap.  I've found that if I don't take that afternoon nap, by 7 p.m. or so, I feel really bad and end up going to bed and tossing and turning until I can finally get to sleep.  So, for me, I've found that I still need to take that afternoon nap.  While I don't have a "normal" life and can't do things others can,  it's better than it was.  I've had to struggle with having this disease and all the discouragement that goes along with having it, but the PID forum has been a big source of support and encouragement for me.  I would strongly suggest that you visit the forum, even if it's just to get more information.  There are forums around the world for those diagnosed with PID, so keep in mind the website address I gave you is for the forum here in the USA.

While this is how I'm having to deal with my PID, others can resume their normal work activities after they begin treatment and start to feel better...some have never even had to stop working at all, they just make time during their daily lives to do their treatment.  So, as I've said previously, it all depends upon your body and how it handles your PID and, of course, the treatment regimen you are on.

I will go more in-depth on the treatment regimen I was started on at the beginning and the trial and errors I went through until I found out what was best for me.  Until next time...
 

Chapter Three:  My treatment begins:

After I was officially diagnosed my treatment began.  I began by receiving medication called "immuneglobulin" which is antibodies that are taken from the blood given by blood donors.  There are many  different trade names and there's several companies that manufacture it.  I started to receive this medication intravenously, and this method is often referred to as "IVIG" (intravenous immuneglobulin, or sometimes people refer to it as "IGIV").  This a picture of a person receiving their medication via IVIG:

This can be done in a hospital setting or in a doctor's office.  Unfortunately, some will have reactions to receiving the medication this way, and usually have to make sure they drink a lot of water prior to receiving their IVIG,  and may have to self-medicate using a combination of medications such as Tylenol and Benadryl.  The process of receiving the medication can take from 2 - 4 hours, usually.  Most people who receive their medication this way receive it every 3 - 4 weeks.

However, there is a way that one can self administer their medication, called Subcutaneous Immuneglobulin (SCIG).  A nurse usually comes to your house and trains you how to self administer your medication and your medicine is sent to you from your pharmacy or doctor's office.  Or you may be trained on how to self administer your medicine by your doctor at his office.  A lot of people find this method a lot more convenient as they can set aside time according to their own schedule in the comfort of their own home.  Also, many find that they feel less side effects from the medicine doing it this way.  A lot of insurance companies are pushing for patients to learn how to self administer as it cuts down on the costs overall.  For those who self administer, they usually do it once or twice a week.

Above you will notice that on the body diagrams there are places marked.  These are places that is appropriate for your needle insertion.  Here is what the end of my needle looks like and you can see it is very small.  I only have to use one needle while others choose to do their infusion faster and use more than one infusion point (see above as the picture shows the individual doing it into two places)

Unfortunately, having the medicine sensitivities that I do, I did not do well at all when getting it IVIG.  It treated me badly and I had severe myalgia, headaches and back pain.  My doctor changed me over to getting my medicine via SCIG, and even then I still had problems.  I found I could not receive my medication in large doses, once or twice a week.  Through a lot of trial and error, I've come to discover that I have to self infuse on a daily basis, and I have to have my pump turned down so low that it usually takes me about 4 1/2 hours daily to infuse all my medicine.  Below is a photo of the SCIG pump I currently use:

So, while getting the diagnosis can be difficult in of itself, finding the right method of administering the medication and the infusion rate can be tricky, also.  Hopefully you will have a good team working with you and they can walk you through the trial and error that comes along with learning anything new.  Good luck and may your health improve greatly!!

Living with Severe, Chronic Pain: Part Three

Chapter Nine:  Living as a person of faith who has chronic illness or pain

I came across an article written many years ago by a gentleman named Cecil Maranville. I would like to share some portions of his article with you, and hope that it gives you some inspiration, as it does me:

"People through the ages have sought relief from illness and pain through spiritual faith.  Without argument, experiencing restored health via one's faith is richly encouraging. By contrast, failure to be revitalized can be the source of profound discouragement, disappointment and even depression.  It may even seem logical to a person who has strong faith that no illness should remain for long.  However, if you possess a strong belief in God and also endure chronic illness or pain, you probably have struggled with your faith.  Why hasn't God made me well?  Without doubt you have prayed for just such a miracle, and may also have others praying for you.  The fact that your pain remains month after month, or even year after year, may well have caused you heavy discouragement.

It is easy to assume that if one seeks to live by God's will and loves Him, He will always relieve one's physical suffering.  Yet, there you are, still bound by pain, disease or disability.  Does the lack of physical relief mean that there is something wrong spiritually?

Some may question your faith and try to say that if you had enough faith then you would be no longer troubled by your ailment, but a simple reading of the Psalms of the Bible challenges that assumption.  Many of the Psalms speak about people of faith who suffered.

Even in the New Testament, we find believers who suffered with illness or pain.  The Apostle Paul, writing in the II Corinthians, Chapter one, assures them that they who are suffering will receive spiritual comfort from God when they endure trouble.  Therein lies a concept which is hard to accept for many Christians, that they can have troubles like illness and pain, and they are often enduring and chronic.

You have to experience trouble before comfort means anything.  We all want to experience the comforting love of God yet would rather avoid needing that comfort.  Comfort, however, is meaningless if we have no need for it.

Within Scripture there are three plain messages:   First, Christians experience trouble;  Second, God is fully aware of their suffering; and Third, instead of removing that trouble, God sometimes chooses to give only spiritual comfort. That is a different course of action than many expect from God.

If physical relief were the most important task for God to attend to, He would certainly provide it!  Of course, God does not bring troubles upon us, but neither does He spare us from them.  The health of our spirit is sometimes not attained, or even thought of, until the health of the body is lost.  We have to conclude that  spiritual comfort is therefore more important than physical comfort.

Paul always draws our attention to the understanding gained by suffering Christians and how they can reach out to help others.  Have you ever been offered help by someone who never had any experience with the trouble under which you are buried?  Have you ever been offered comfort by someone who was or is buried just as deep as you?  Which one offered more meaningful comfort?  Which one would you seek out if you had to choose?  It's obvious that there is great training value in enduring troubles.

Christians are supposed to gain experience with all kinds of difficulties, work their way through them with the comfort of God and His people, and then pass along sympathy, empathy, caring and comfort to other people who hurt.

Many people provide support to those wrestling with the challenges of illness or pain.  Obvious acts of kindness include listening, reading aloud, providing meals etc.   But genuine comfort is often communicated beyond the words and actions through an attitude of understanding.  That depth of understanding comes only by having been through a similar challenge.  It is priceless training, equipping the Christian to extend encouragement to those who truly need it.

In II Corinthians, Chapter four, Paul draws an analogy between mortal men and jars of clay which hold a valuable treasure.  The less you value the clay pot, the more you concentrate on what is inside of it.  By contrast, the beautifully ornate container of a treasure becomes an item of worth in itself, and can distract attention from the true treasure inside.  His point is clear.  The spiritual health of a person is a treasure.  Their physical condition may be like crumbling old clay, but that will only highlight the infinitely greater value of a spiritually healthy mind, the inner treasure.

As mentioned previously, there are many Psalms which provide comfort like a refreshing cloth to a fevered brow. For a person dealing with chronic illness or pain, there is a multifaceted message to be found in the Book of Psalms.  Psalms vary from discussing dealing with fatigue, depression and disability, to anxiety and chronic pain.

For example, Psalm 6:   notice the vocabulary with which the chronically ill can so easily identify.  "I am faint"..."my bones are in agony"..."my soul is in anguish"..."I am worn out from groaning"..."all night long I flood my bed with weeping"..."my eyes grow weak with sorrow".  Sober thoughts of the possibility of death are seriously weighed.  The Psalm concludes with an uplifting sense of hope and relief of mind.

In Psalm 10, the author felt alone, helpless, overwhelmed by trouble and grief.  All too familiar to one who has chronic pain!  Once again, he is able to find bolstering for his spirit, but not necessarily for his body.

In Psalm 13, the author felt abandoned, struggled with his gloomy thoughts, unable to make sense of his awful trials.  He was depressed every single day.  The Psalm ends with his recapturing a confidence that things will be okay; he's cheerful, even feels like singing.  These are thoughts of coping. It doesn't mean the difficulty doesn't end.

In Psalm 31, the author is in anguish, torn up, overwhelmed both mentally and physically.  Note the chronic nature of the affliction, lasting a period of years.  His choice of words, "my bones grow weak", graphically portrays a chronic fatigue and long lasting illness.

In Psalm 102, the author talks about enduring a prolonged difficulty.  He's stressed out.  The days blend together without meaning.  His bones "burn with pain".  His appetite is gone due to discouragement, and he's reduced to skin and bones.  Sleep patterns are poor, and he cries often.  Yet even he has an unquenchable positive outlook on the future.

In Psalm 119, we find perhaps the most powerful, uplifting Psalm, that is a favorite of many readers of the Bible.  However, when you look closely at it you see that it speaks frequently about living with pain or illness..."I am laid low in the dust"..."My soul is weary with sorrow"..."My comfort in suffering"..."Before I was afflicted"..."It was good for me to be afflicted"..."My soul faints with longing for your salvation"..."My eyes fail, looking for your promise"..."I say, 'When will you comfort me?"..."I have suffered much"..."Trouble and distress have come upon me"..."Look upon my suffering".

In Psalm 22 we see the thoughts of a physically tormented man.  He is sleepless, hopeless, abandoned by friends and family.  His energy is drained.  His joints ache, his courage is melted, and he has pain.  He concludes the Psalm with a positive swing in attitude of mind to a sense  of hope.  But once again, it is in the mind that the hope has come, not the body.  

Think about the personal stories of the servants of God you have just read about.  We read about people who felt like they needed a safe place to crawl into and hide from overwhelming problems.  They were frustrated, discouraged and depressed people.  Some struggled with anger, many were fatigued and stressed out, with aching joints or bones and sleepless nights.  In short, we read about many servants of God who had chronic pain or illness.

I hope you are able to draw much encouragement by reading and identifying with these heartrending personal stories of the intimate thoughts, hopes and fears of people of faith who lived with chronic problems.  And I hope that two things stand out to you:  first, a person can have a sick body, and at the same time,  be " in good standing" spiritually with God, and second, regardless of poor health and maybe even because of poor health, a person can find mental and spiritual health through God if they ask Him for it.  

 Please remember that being sick or in pain does not mean that you have somehow failed God or are receiving punishment for something.  Unfortunately, illness and pain are often a part of living this life, but if we focus on our spiritual life and not our physical body, then hopefully we can transcend the problems with which we're struggling.  Look with hope to the future, when we will no longer be in pain or suffer with illness.  He promises there will come a time when He will wipe away every tear and we will no longer have this  pain or illness as our constant companion.  Until that time, He promises to comfort us if we will allow Him."

Living with Severe, Chronic Pain: Part Two

Chapter Six:  Attacking your Pain

Now that you've identified some of your pain triggers, the next step is to do an inventory of everything you know that helps control your pain, or prevents even the slightest flare up of pain and helps you stay as healthy as possible.  Those who have a variety of measures they can use are much more effective in keeping their pain manageable.  You can only control your pain by coming at it from several directions at the same time.  You cannot rely on just one thing, hoping that it's the answer, or "the cure".  Most people with IP find that they have to have an arsenal, so to speak, upon which they can draw.  For instance, have you found that sometimes an ice pack helps relieve the pain but the next time it's the heating pad that helps?  

Think of managing your pain as a football team, where there are many players but they are in different positions so that they function together in order to achieve the goal of winning the game.  There's no doubt that control of your pain is difficult, but hopefully if you do more than one thing it will help alleviate more of your discomfort.

So let's look at your inventory. Begin by writing down what you know already helps.  It can be the heating pad or ice pack that I previously mentioned.  More than likely, the first thing you write down will be your medication, probably a strong one at that, as those who have reached IP are way beyond using over-the-counter medications, and may even be working with a pain management doctor or a family doctor who is giving you medication that may be considered a controlled substance, such as a narcotic, also called an opioid.   Give the following suggestions your consideration and if you think they may help, even a little bit, add them to your inventory:

-wearing a brace of some type (neck brace, back brace, knee brace), even for a short time or when you're doing certain activities

-using a cane or walker that can help take the weight off an affected limb

- the shoes you wear - do they give you the right arch support and foot stabilization as this can have a big impact on lower back/hip pain

-short rests or laying down briefly throughout the day

-making sure you eat properly as one tends to skip meals when feeling bad (make sure when you do eat that it's healthy as you don't want to add to your problems by being undernourished; also your brain needs glucose to function so if you don't eat you can feel more depressed as your brain and body aren't being fed.  Try to eat high protein...men especially need high protein in their diet.)

-taking a brief walk to help loosen you up and trying to walk further the next time (if stuck indoors, set a timer and walk around the house for 10-15 minutes to stretch muscles)

-slow, easy stretching or lightly doing range of motion exercises to help lengthen and loosen tight muscles

-petting your cat or dog and enjoying their attention and affection

-gently massaging/rubbing your painful area

-accupressure

-accupuncture

-trying to just rest, even if you cannot truly sleep through the night as you'd like due to your pain

-sleeping on the sofa or a recliner if you find it more comfortable

-watching a movie to get distracted from your pain for a while (try to watch something that makes you laugh or at least smile as it increases endorphins in the brain which can temporarily help you feel a little better)...probably ought to stay away from the news or others programs that bring you down emotionally

-have a friend come over for a short visit as a way to help you feel you're still in contact with the outside world; inquire about them as a way to distract you temporarily from yourself

-reading or another hobby you enjoy, as long as you stop before you cause your pain to become worse

-making sure that you don't become constipated  by eating correctly, drinking enough water or taking something like a laxative or a fiber supplement

-going for a gentle swim in the local swimming pool or joining a rehabilitation-type water exercise program as they usually will not push you beyond what you feel comfortable doing;  water is also known for being a good way to exercise as the added buoyancy makes it less stressful on your muscles and joints

 -just standing in the shower (a trick a rehabilitation therapist told me once:  first turn on the warmest water you can tolerate and put your painful area under it...then turn the water to the coldest you can tolerate and put your painful area back under it.  This causes the nerves to  expand and then contract, which can help temporarily reduce pain (or you may find that it's better to use the cold water first and then the warmer water).

-laying in a warm, relaxing bath

-lose some weight if you feel it would help your painful area (ie, knees, hips, low back)

-listen to music that you find relaxes you or helps take your mind off your pain

-prayer or meditation; going to church services, if you are able

-getting a gentle massage by a professional, making sure the therapist knows what you can handle and what areas to avoid

-using a topical cream or lotion that can reach the affected nerves as oral medications may not always work adequately

Here are a few additional suggestions you might find helpful:

-watch the amount of alcohol you drink and when you drink it, as it can affect your ability to get good sleep; it may help you fall asleep but several hours later it will awaken you due to your sugar dropping

-have children's Pedialyte on hand for when you feel bad so you don't get dehydrated, especially if you are vomiting

-prepare small meals ahead of time and freeze them for times when you don't feel up to cooking

-have liquid replacement meals (ie, Boost, Glucerna) that you can drink when not up to cooking

-have a friend or relative bring you over a meal when you cannot cook

-pay attention to your sugar intake as it can affect not only your mood, but also your sleep and your body's ability to fight off infection

-have someone help you with the housework or yard work, or ask them to do it for you

-watching how much you smoke as nicotine affects your appetite

-join a forum or chat room on the internet;  you can remain anonymous and still receive the benefit of interacting with others, get information and find out about the latest innovations medicine is discovering about your medical problem

-volunteer for a few hours every week if you can; helping others can help distract you from your own difficulties

-join a local support group or start one yourself if you're up to it; there is often comfort in knowing you're not alone in your struggle

Remember that one thing may help at one time but not the next, so you'll need to be ready to try something else if you're not getting enough pain relief.  It is important that you try to maintain your pain at a manageable level as uncontrolled IP has numerous complications which could possibly shorten your life and incapacitate you.  Next time, we discuss how uncontrolled IP can affect your body.  

 

Chapter Seven:  The importance of controlling your pain

So far,  we've looked at the need to identify your pain triggers and pull together a list of those things that, when done together, can hopefully help you keep your pain at a more manageable level.  If you don't take this seriously, Intractable Pain (IP) has the potential to cause you many severe complications which could shorten your lifespan and possibly incapacitate you.  You may be thinking "I'm already dealing with the complications of this pain and the limits it's put on my life, how can this possibly get worse?" and I can understand your thinking.  When one is in pain and feels there's not a lot of hope for improvement, you can easily draw the conclusion that it's already bad... and for me to tell you it could become worse is certainly not what you want to hear.  My goal is to inform you so that you can take better care of yourself...you certainly don't need to add anything more to what you're already dealing with.

What I want you to do is look at how you manage your pain from a different perspective.  Most people with severe, chronic pain understand about pain fluctuating and possibly getting worse, and also the toll it can take on one emotionally, mentally and financially.  What I want to point out in this teaching is how it can take an even worse toll on you physically if not properly managed. 

One of the ways it can affect you physically, that you may not think about, is your blood pressure and pulse rate.  Uncontrolled pain can drive your pulse rate and blood pressure up to very high, unsafe levels.  It is advisable to keep a blood pressure and pulse rate monitor in your home so that you can monitor them.  They are relatively inexpensive nowadays and can be found at any local drugstore. It is recommended that you check yourself at least once a day and when you're in what you would consider your "normal, everyday pain".  That way you will know what is typical for you.  Then, when you are experiencing increased pain, as in during a flare-up or breakthrough episode, monitor it more often.  If your pain causes your pulse rate to go above 120 beats per minute, you are at serious risk for a heart attack or stroke.  Always keep your medical doctor aware of your blood pressure and pulse rate when you are dealing with increased pain, as the increased pain may cause your usual blood pressure medicine to not work as effectively given that your system is now under more stress.  Only adequate pain control can help lower blood pressure problems caused by pain.  If you keep a chart of times when your pain is high and can show your doctor how it corresponds with increased blood pressure and pulse rate, you may find him/her to be more willing to take your pain complaints more seriously.

Another way that your body can be affected by unmanaged pain is by it causing your adrenaline levels to rise.  According to Dr. Tennant, this happens as a result of your hypothalamus causing your pituitary and adrenal glands to become over-active, which in turn produces excess levels of adrenaline, cortisol and related chemicals into your bloodstream.  Excess adrenaline causes the increased pulse rate and blood pressure, and over time excess cortisol can cause complications such as bone loss, weight gain, osteoporosis, hypertension, diabetes and even suppress your immune system.  Other complications can be fatigue, tooth decay, loss of libido, memory loss, poor concentration, insomnia and  hormone problems.  This is another reason you need to monitor your caffeine and sugar intake, as they have a direct affect on your adrenal glands..  And, if your adrenal glands are already being taxed because of the pain you live with, you certainly don't want to add to it. 

Unfortunately most doctors are not aware of these complications of living with chronic pain, so it is going to be up to you to monitor yourself for any of these conditions.  I understand all too well that you may not be getting the pain relief that you desire, and if you can show your doctor that you're experiencing other physical problems as a result of being under treated for your pain,  hopefully he/she will be more willing to work with you and not see you as someone who is just looking for more medicine or, as one doctor told me, "you just have a low pain threshold".

One tip that I'd like to leave with you.  What I have come to realize in my own dealings with doctors regarding my pain issues is that there is lack of understanding on their part, so one of the ways they have tried to compensate for that is by coming up with the "pain chart".  You've probably seen one of these:

The typical way they try to understand your pain is by asking you to rate your pain on a scale of 1-10, with 10 being so bad you're almost about to pass out.  While this can be somewhat informative, it doesn't paint the whole picture for them.  So when they ask about your pain, don't get stuck on giving them a number or just saying you're hurting, as what "hurting" means to one person can mean something totally different to another.  Especially those of us who live with chronic pain. We've become accustomed, unfortunately, to living like this and may downplay the intensity of our pain as we've become desensitized to its impact on our life.  Instead, start telling the doctor specifics about how your pain is affecting your life:  

-tell him exactly how many hours of sleep you're getting, don't just say you're not sleeping well.  

    

-give him examples of how it is affecting you at work (I can't sit for more than 15 minutes; I can't lift more than 5 pounds; I have missed so much work because of doctor appointments or not being able to get out of bed due to my pain or lack of sleep that I'm close to losing my job; I have been reassigned to another position as I can't do my current job anymore; I'm having to ask to be moved to another desk closer to the bathroom because I have to go to the bathroom so much; I can't concentrate because I get so little sleep that I'm exhausted all the time; I lost my job because I couldn't do it anymore due to the pain; I've had to go on medical leave because my job requires me to do things that I'm no longer able to;  I can't sit at the computer long enough to get my work done at my job).

-give him examples of how it's affecting your personal life (my spouse and I no longer have sexual relations due to the increased pain it causes or the pain I'm in; my children feel neglected because I can't spend time with them at their sports activities anymore; I can't go to the grocery story as much and when I do I need help to push the grocery cart around; I'm unable to drive or I can only drive for 15 minutes before the pain becomes too much for me to handle; I haven't been able to attend a family function for the past year because I'm just in too much pain or cannot travel that far).

-give him examples of how it's affecting you mentally (my ability to concentrate is getting worse and I find I re-read the same sentence over and over because it just won't stick; I feel so useless that I just don't try to do much anymore; I'm forgetting more things and it worries me; I'm in trouble at work because I'm forgetting so many things that used to be easy for me; I'm avoiding my co-workers because I can tell they don't feel comfortable being around someone with my health issues and this is depressing me as I really like all of them; I'm afraid I'm going to lose my job because of my poor job performance).

-give him examples of how it's affecting your ability to take care of yourself...this is extremely important because one of the main measures doctors use to determine the severity of your condition is called "Independent Activities of Daily Living (IADL)",  (I can't take baths anymore because I have a hard time getting out of the bathtub; I'm losing weight because the pain is affecting my appetite; I'm not taking care of myself like I used to and my hygiene has become poor because I just hurt too much/feel too bad to take care of myself properly; My spouse has to help me get dressed in the morning; I'm not able to cook because I can't stand up long enough to make a decent meal; I'm behind on paying my bills because I just can't concentrate and now the gas company is telling me I'm behind on my payments; someone is having to help me bathe; I'm having to have my meals brought to me; my spouse has had to take over giving me my medicine because I'm in too much pain to get out of bed).

These are just a few suggestions for you to think about and possibly use in order to communicate with your doctor better.  Also, it's always better if you can take someone into your doctor appointment with you who can back-up what you're telling the doctor, or add their input as to what they may be seeing going on in your life due to your pain that you, yourself may not even be aware of.  I've noticed that when my husband goes in to a doctor's appointment with me they usually tend to take me more seriously because there is someone there to corroborate what I'm saying. Remember, the more detailed information your doctor has, the better chance you have of developing a good working relationship with your doctor and getting the help you need.   
 

Chapter Eight:  Medications that may help you

Before I write this section, I would like to remind the reader that I am not a doctor. The information I am going to give you is from personal experience as a person who has lived, and continues to live with chronic, severe pain.  The information I have is what I have obtained for my own purposes through the years.  I am sharing it in the hope that it may be beneficial to those who read it.  Please consult with your doctor or pain management doctor about any changes in medications you are contemplating or think about trying after reading this section.  

In my journey to find pain relief, I came to the conclusion that every doctor I saw seemed to have medicines they liked to use for their patients who need pain relief.  They ranged anywhere from aspirin to Tylenol, which are typically used for temporary, minor pain relief.  It wasn't until I became acquainted with the field of pain management, and had been to multiple doctors that ended up being a waste of time and money, that I began to discover the many other medications that are out there that can help one get relief from their pain...maybe not total relief, but possibly enough relief to make one's pain more manageable and increase one's quality of life.

 

Dr. Tennant, whom I've referred to in the past,  believes that for many with Intractable Pain (IP), opioids are the main medication to use for pain relief.  He describes the nervous system as "having specific pain relief trigger points known as opioid receptors.  Natural pain relief in the body is caused by a group of chemicals known as endorphins, which attach and activate these receptors.  Since these pain relief sites receive endorphins they are called "receptors".  Endorphin is so closely related to morphine that the name endorphin is derived from "end", which is Latin for "in the body", and "orphin" which is the last part of the word morphine."

 Most medicinal opioids, including Opium, Morphine, Codeine and Hydromorphone, are derived from the poppy plant.  He believes that they are natural plant compounds and, consequently are safe when taken at proper dose under the guidance and care of a knowledgeable doctor.  At present, he believes this class of drug is the best option for those with IP.  While opioids do not cause side effects that other medications can cause, they do have to be used with extreme caution as they produce sedation, mental impairment, slower reflexes, as well as hormone depletion, and there is always the chance for overdose.  Unfortunately, IP patients who may benefit from this type of drug often find a bias within the medical community due to the fact that some patients have abused these medications to the detriment of the many who could benefit from being on them.

When your doctor has you first start using opioids for treatment, he/she will most likely have you start with one listed under what is considered a "First Step opioid".  These include: Vicodin, Lortab, Norco, Darvon, Darvocet, Darvon-N, Ultram, Empirin, Fiorinal, Panlor, Talwin, Nubain and Stadol.  This group have fewer side effects, and usually create little dependence when actually used for pain relief and not abused for recreational purposes.  Some contain acetaminophen, ibuprofen, aspirin, or other potentiators, which are compounds that make the opioid act stronger and last longer.  Some IP patients may require two of these "First Step opioids", which may be a preferable treatment approach rather than moving on to the "Step Two opioids".  First Step opioids are short acting in that they usually provide pain relief for about 2 to 4 hours.  Vigorous attempts should be made to avoid having to go on to Step Two opioids since they can produce complications.

"Step Two opioids" are only used if Step One medications fail to adequately reduce pain.  They include: Methadone, Morphine, Oxycodone, Fentanyl, Levorphanol and Oxymorphone. They are much more potent than Step One medications, and are usually required if pain is constant and severe...meaning it never goes away during the entire 24 hour day unless the patient is able to sleep.  Patients who have possible cardiac-adrenal syndrome may require Step Two medications.  Step Two medications are often referred to as long acting, since they remain in the blood and control pain for several hours.  Long acting opioid medications, including Morphine, Methadone, Oxycodone and Oxymorphone are to be taken on a regular, fixed schedule.  The time interval may be every 6, 8, 12 or 24 hours.  IP patients need to discipline themselves to take their long acting medicine on a fixed, regular schedule.  They are NOT to be taken just when needed, and when taken this way, the patient will soon find that their pain is not controlled very well.  Some patients may also need to use a Step One opioid during pain flares and breakthrough pain.

Unfortunately, many IP patients experience "breakthrough pain", which can cause one to go to bed for extended periods of time or even require a visit to the emergency room.  Dr. Tennant believes that one's doctor may have to help educate the severe IP patient in order to master the use of a long-lasting opioid in addition to using one or more "breakthrough" opioids.  Rapid breakthrough pain relief within 5 to 15 minutes is the goal of the use of breakthrough opioid medication.  Some are given in the form of liquids, lollipops, injections or suppositories.  They are commonly referred to as "short-acting" opioids because they may only act for 1 - 3 hours.  The common names of breakthrough opioids are:  Fentanyl (patches or lollipops), Dilaudid (liquid, injection or suppository), Methadone, Demerol, Oxycodone, Morphine (liquid, injection or suppository), Oxymorphone, or liquid Hydrocodone.  

Some doctors may want to make sure you get their permission before you add in an additional "breakthrough" medication as they want to make sure you are not getting over medicated.  It is very easy, in the height of severe pain, to reach for whatever is handy and to possibly over medicate yourself, especially if you are already somewhat sedated or have not kept track of when you last took your medication.  It is very easy to forget that you already took your medication and to take a second dose in error.  Some doctors, in order to protect themselves and their patients,  have their patients sign a contract agreeing to random drug testing and have their patients read their office guidelines in order to educate the patient on how his/her office handles refilling prescriptions, filling a lost prescription, etc.,  to insure that the patient is taking the medications in the manner that the patient and doctor have agreed upon.  I don't believe the doctor is trying to make things more complicated...I think they are just trying to protect you from any mishaps, and they also have their license to protect if they want to continue in their profession of helping patients deal with pain.

Dr. Tennant cautions that one of the biggest mistakes some IP patients and their doctors can make is to get too dependent upon one medication because the patient  may actually become tolerant to the opioid over time and need to switch to another for better pain relief.  Some doctors rotate a person's pain medication so as not to lose its effectiveness.  Some of these medications  are expensive and patients often find that the older generic opioids such as Morphine, Methadone, Hydrocodone, Meperidine and Hydromorphone are good enough for pain control. You must, along with the help of your doctor, identify several medications that are effective for you, if you find that using one alone doesn't work or begins to lose its effectiveness.  Unfortunately, you insurance plan may play a big part in deciding what medications they will pay for, unless you are fortunate enough to be able to pay for your medication in cash.  However, you may find that some medications have been on the market long enough and now come in a generic form, so the cost is reasonable. And if the cost is too high, you can go on the internet and see if there are any discount coupons available for the medication.  I have saved quite a few dollars using discount coupons that manufacturers have posted on the internet.

In addition to medications for pain control, some IP patients may also require assistance from their doctor with other medications (ie, sleeping aids, muscle relaxants, medications for constipation as opioids tend to cause digestive issues).  If you find that your IP affects your ability to sleep, your doctor may also want to add a small dose of an antidepressant to help you sleep better.  It's usually not the same dose as one would receive if being treated for depression, but it's been found to be useful at a low dose in some patients to help them sleep better.  Unfortunately, IP patients are notorious for having sleep problems, and some find that getting four hours of sleep a night is the best they can do, and therefore they may have to take a nap through the day.  There are some IP patients who cannot sleep for more than two to three hours at a time, especially if they have damaged their spine, hips, knees, or nerves in their arms or legs.  What happens is if you sleep too long on these damaged tissues, you may crush them and produce more pain.  Your body will awaken you frequently so you avoid sleeping in one position and cause further damage.  It is suggested that IP patients may need to take their last daily opioid dose within one hour before bedtime, and when they awake in the night, they should get out of bed and stretch and walk about briefly.  If you have pain during the night that interferes with sleep, your doctor may advise you to take a dose of your breakthrough medication when you awaken so you can eventually get back to sleep.

Other medications that you may want to discuss with your doctor are muscle relaxants and anti-anxiety medications.  Some IP patients find that they benefit from them as they may be anxious/worried (who wouldn't be if you're living with chronic pain!),  or experience muscle contractions as a result of their condition.  Some IP patients, however, find no benefit from taking these medications, so this is something else you and your doctor will have to investigate to see if they will be beneficial for you.

I have given you a lot to think about,  and I sincerely hope that you have a doctor that you can discuss your medication needs with.  Again, this is another reason why I strongly suggest that you try to find a pain management doctor who is well trained and is willing to work with you on an individual basis.  He/she can help you find what combinations of medications you need in order to not only have more managed pain,  but a better quality of life.  As I have mentioned before, a lot of doctors are very reluctant to enter into the realm of true pain management as they are either worried about being undereducated about these aforementioned medications, or are worried about their patients becoming addicted.  Please, look into getting a qualified pain management doctor if you feel you're not getting the adequate pain relief that you need.

"For all the happiness mankind can gain, it is not in pleasure but in rest from pain",  John Dryden.

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.