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.