Some Useful Hints to Help You Survive Chronic Pain

October 25, 2006

These Guidelines have been created through my own experiences with Chronic, Severe pain. Through many trials and errors, I have come up with a few ways of learning to deal and cope with chronic, unbearable pain and how to learn to adapt with the things it effects, in our life in general.

These Guidelines have been created through my own experiences with Chronic, Severe pain. Through many trials and errors, I have come up with a few ways of learning to deal and cope with chronic, unbearable pain and how to learn to adapt with the things it effects, in our life in general.

Firstly, How do I know if I have Chronic Pain or a Chronic Pain State ?
If your pain has lasted for 3 months or longer and it has been continuous... then this pain is classed as Chronic.

In most cases this means pain that is... 24 hours a day, 7 days a week....then this is classed as "Chronic Pain " Some pain clinics will not take you unless you meet their criteria. This can be extremely frustrating and hard for some patients and an endometriosis sufferer is a good example, especially if their pain and suffering happens to be cyclic but some endo sufferers, do suffer pain 24 hrs per day, 7 days per week. This is when you should definitely be referred to a pain specialist, no one should have to suffer like this, not in this day and age with the options that are available.

Finding a Good Pain Specialist & where to begin
You can start by asking your local doctor if he/she can recommend a good pain specialist, in your area. Remember the closer to home the better.

You could also try calling the largest teaching hospital in your area and ask what programs are available for the chronic pain sufferers and what kind of doctor heads this clinic, what is his/her specialty?

Finding a good Pain Specialist can be difficult as we all have different needs, with different diseases and conditions, causing our different pain states. Finding one who will listen and take your pain seriously, is of number one importance.

Types of Pain Specialists
There are different kind of pain specialists, some are - Anesthetists, Neurologists, Rheumatologists and others are Oncologists. All these doctors have branched in to pain management, each offering some kind of Pain Management clinic, each with their own ideas and methods, each with their own approach.

What type of treatment do you want?
Some use pharmaceutical medications, such as narcotic pain relief and some don't. Some use hypnotherapy and relaxation techniques. You have to decide what has helped you in the past or what you are willing to try in the future. 

Asking around at a local support group or association
They may be able to recommend a local pain specialist, one who may be helping some of the other members with the same disease or condition and who also has ...some valid references.

Different Types of methods and practices and medications....which are all aiming... in reducing the amount pain and suffering. 

Relaxation, Meditation & Massage
This can help some people and they may get a lot of relief just through relaxing their bodies. Hot baths with Radox (herbal bath salts & minerals) and other bath salts and minerals.. can also help you to relax a lot .

Finding somewhere close to home or that does home visits of any type of massage, maybe you have found a certain type that gives you relief, if you have never tried, ask others what they have tried and what has helped them. This can work so well for pelvic pain, in fact a lot of different pains can be eased by massage. If you get a good masseur, who knows a good technique of Swedish, remedial or even Shiatsu and any other types that they are trained in, that helps and eases the pain. This can give a lot of relief through my past experiences.

Reflexology
Also known a foot massage. This has also helped some people and maybe used in conjunction with any of the above treatments.

TENS Machines
Have helped many Chronic Pain Sufferers (from endometriosis to Chronic pain states). Transcutaneous electrical nerve stimulation, commonly known as a TENS machine. This is where electricity is applied through an electrode to the site where the pain is located. The increased volume of electricity can help to relieve the pain. This works for some but not others, we must remember we are all unique.

Acupuncture and Acupressure
This treatment has helped many people but finding a good traditional acupuncturist, is the main concern. Also, Finding a good acupressurist is also beneficial. Try finding some one who massages well and does acupressure also. This usually works the best.

Positive Thinking, Imagery and Progressive Muscle Relaxation
We all need to be thinking positive even though negative thoughts will continually follow you pain is pain and it is something that brings us all down. We must try and turn negative thoughts into positive thoughts, we need to retrain our minds, again behaviour modification (See Counselors).

Imagery is great as it can take you away from your pain to an island with aqua blue water with palm trees and a gorgeous man serving us cocktails in the the warmth of the sun which is easing all our pains and worries...This is imagery.

Progressive Muscle Relaxation
This is a great way to try and relax your entire body, especially tired and aching bodies. It is very simple and is best done in bed just before you go to sleep or in the middle of the day to try and help you through a bad pain episode.

Lie in bed or somewhere comfortable and quiet.
Firstly relax and concentrate on your breathing in and out trying to do the breaths deep and slow, in through the nose out through the mouth. Then start by squeezing and curling your toes up and hold them tensed for a count to 10 and release and relax. Progressively move up your legs from your toes to your ankles and then knees and thighs and repeat the same process, as you did the first time, with your toes, holding each part of your body for a count of 10 and then releasing and relaxing. This is to continue to your torso and then your chest, to your arms and elbows and shoulders until you reach your face and tense up and release. By the end you may just find your self asleep. This is a good trick for insomnia also.

Hypnotherapy
Has helped many people and can aid in helping you in many different areas, including relaxation. If your counselor practices it, ask about it and talk with others who may have tried it.

When Looking for New Options Available.. RESEARCH --From medications to Alternative Treatments
Look for as many new options as you can, (some pain clinics will make you stop all out side input and treatments), for instance seeking alternative treatments such as osteopaths, chiropractors and acupuncture. These treatments may work for some but not for others. The reason the pain clinic does this is because they want to see if they can help you and your pain, without any outside factors. If you are requested to do something by your doctor or pain clinic, or not to do something, its important that you do as you are requested.. This gives yourself the best chance possible of letting it work. Always do as your doctor requests and if you don't, let him/her know or you may damage a good relationship.

Osteopathy (The study and treatment of bones by manipulation)
This treatment has helped many endometriosis sufferers and it has helped me personally for many years. Actually it helped me until the car accident and after I experienced nerve damage, this has now made it impossible for me to receive this type of treatment, except, I am able to have gentle work done by my physical therapist which is still very painful because the nerve damage.

Chiropractor (Treatments deals with the spine. There are different types of treatments, some relate to manipulation of the spine or other bony structures. Some practitioners use blocks to help with alignment of the spine)
Treatments like Chiropractors, have helped many other chronic pain sufferers. Some of these practitioners also do acupuncture which makes life easier but finding a well recognized practitioner is the MOST important thing. Do NOT go to just anyone, you could cause yourself more harm than good.

Narcotics & Medications 
Help a lot of chronic pain sufferers and narcotics such as opiates, have been used for many centuries and with good effect.
There are different types of opiates, that have been created over the years and some are short acting, some are long acting; meaning slow release. Its a matter of finding one which suits you, as a patient. Its a matter of trial and error and sometimes a combination may work better, than a single drug.

Narcotic Pain Relief...
It is not a crime, if this type of pain relief works for you.
It is our right to be Pain Free... it is everyone's right no matter what country you come from.
Narcotics can be delivered in a Slow Release tablet and can be used in combination with short acting narcotics. 

Non Steroidal Anti- inflammatory Drugs
These can work very well and relieve good amount of pain.. IF the patient can tolerate this type of treatment. These types of drugs should not be taken long term but can help a lot with acute pain associated with flare ups and taken for a short period.

The non steroidal anti-inflammatory drugs are a group of drugs used in the treatment of arthritis. They relieve inflammation and pain by blocking the production of a pain-producing chemical known as prostaglandins. This makes these drugs useful in the treatment of Predicted Pain, (endometriosis pain, associated with ovulation and period pain), BUT the only way these drugs can work is by taking them before the prostaglandin is produced, so it has to be taken BEFORE the pain begins. This is not effective for long term use, due to the GI problems that they can cause. This is to be used in flare ups and for acute pain and can be used in conjunction with narcotics.

Nerve pain Drugs 
Neurontin is a drug originally prescribed for epilepsy but it is now being used for nerve pain. This is a drug not to be taken lightly, it is a strong medication.

Anti Depressants 
These can also help with chronic pain by helping to extend the lengths or increase the effect of any narcotic medications that are used. Often these medications are necessary anyway, as chronic pain nearly always causes depression, low self esteem and many people who suffer from chronic pain end up at some stage having to give up work or even have had to leave the work force altogether due to the pain.

Mental Health 
A Counselor or Psychiatrist should be a part of your pain management team, this type of doctor is essential. You should be seeing this person at least once a month, it is important that you are monitored and that any antidepressants you are taking are being monitored or watched by a psychiatrist.

Pain Clinics 
Do some homework on the local pain clinics, call around and ask how their programs work. Some people will suit group support but some of us need to be seen one on one with our Doctors. Different hospitals have different approaches, call and ask what their methods are, tell them you are comparing clinics for a friend or family member you don't have to tell them its for you. They may treat you differently if you are enquiring for a loved one who has been in continuous pain for over 3 months.

When you find a pain specialist or clinic that you think may suit you, go back to your local doctor and ask for a referral and ask if he knows anyone who has attended this clinic. Remember Each Situation is Different. If you are unable to make your mind up about the doctor or clinic...Try to give the doctor another chance, do not decide after one visit, remember you are assessing each other. EXCEPTION: If your experience is so bad that you are left feeling sick or in more pain, then these people may be toxic to your health. We all know a bad experience when we are in one so don't stay, leave if you are not being treated with respect or compassion.

Another exception is if the doctor refuses to treat your chronic pain then just get up and leave the appointment and thank them all the same.

Unfortunately Some times a pain clinic will put you through a series of appointments with a pain specialist, psychiatrists, physical therapist and this can sometimes take most of the day. These appointments must be with a caregiver, so if you have a bad experience it can be a traumatic day.

Other clinics, will consist of a complex appointment with a pain specialist and he/she will test you in all areas himself. If you have been told that... "your pain is for life" or "Get use to this, its chronic" then you might be better with a pain specialist, who will stand by you and who believes and understands your pain. Only you will know whether the doctor understands and listens to you and your pain, especially because you will begin to feel like someone is on your side and supporting you and they somehow understand what you are trying to say and you then may start to receive proper treatment and relief and if you don't, then she/ he will try to help you obtain relief in some way or some how. 

Support and Referrals 
You could ask around at a local support group or association, maybe they can recommend a local pain specialist who may be helping some of the other members and has had some good reviews

You may like to find a local support group or even start one of your own, on the computer or off. Find an association that has been formed for your disease or condition, join up and be a part of the latest developments through their newsletter and see if they have a support group and find out where they meet. (From endometriosis to chronic pain to cancer, support groups and associations can help you a lot in the long run). Ask around and see if there are good or bad comments on this particular clinic or doctor, even call the local association that you are a member of and ask if they have dealt with this particular clinic or doctor, Research is your best chance of finding a good doctor or clinic which will suit and help you.

IF ITS ALL TOO MUCH call a Crisis help line especially if you are suicidal, talk to someone. There will be horrible days, that are dark and gloomy but these days or nights will also soon pass and you will have better days, always remember that this is not a permanent state. In time it will get better.

Call a friend who understands or is sick themselves, maybe even with the same disease or they suffer a chronic illness themselves, someone who cares and understands what you are feeling, these people can be a life line in times of distress and need. It is said,  "To share your pain is to cut it in half ". In other words, it helps to talk about your pain and share it, whether it be with a counselor or a friend, someone who will listen to you and not judge you.

Things we can do to help ourselves
Get yourself a few heat packs - Get a heat pack that can be used for both hot and cold, these can be purchased from a pharmacy or medical appliance shop. A wheat or rice pack is easy to make and can be used as an emergency heat pack. It is made with rice, which can be placed in a sock with the end tied and a few drops of lavender placed in with the rice, this is a relaxing scent. This can be popped straight into the microwave and heated for a minute or 2, depending on the size of the sock and power of your microwave.

Get yourself a couple of pillows - get one that you can take with you when you go out, it will help you to get more comfortable and lessen the pain of car rides. I hugged mine for the first 12 months after hospital and was placed in between me and the seat belt and it gave me a lot of relief. I also had an extra two for bed, one that I placed in between my legs, so my knees didn't touch, when I lay on my side, the most comfortable way for me to sleep and I also had a pillow behind my back, so I didn't roll when the pain to move was too much.

Hot Water Bottle
My hot water bottle not only soothed my pain it comforts, especially in bed at night. 

If you are using a computer, make sure you get up and stretch and change your positions frequently. 

An Exercise for Computer uses  
An exercise which can benefit us all, especially for anyone who uses a computer for any given length of time.

Lay out a towel on the ground get a smaller towel that is the length of your spine, fold it over continuously to make a splint for your spine, make sure it is smooth and evenly folded and place it on top if the other towel, get a small pillow or another towel to use to help support your head and make sure its not too bulky or it will ruin the benefit of the exercise. Lay down and have the rolled or folder towel the length of your spine with your head supported on the small pillow or towel. Lay there still, when you are comfortably place on the rolled towel for anything from 20 minutes onwards, longer if you like, especially if you feel the relief is helping you.

This exercise is for resting your shoulders and puts you into the correct position that you should stand and sit. It will help your posture and your pelvic and back pain. Its a wonderful exercise for everyone from young to old.

Things we have to deal with even though we don't want to  Society  
Society can make us feel weak, as if we can't cope with the pain or we are sick, it is not socially accepted to be sick or in chronic pain but remember these people have no idea what you are suffering from, nor have they felt the pain like you are feeling. These people have never been really sick or in pain for a long period or a long length of time, not many active people that you will meet will have suffered like this which is really chronically, meaning for longer than 12 months at one time, even 6 months is forever, when you are in pain all day, every day. Sleepless nights, a pain that has no beginning or end. Only another real chronic pain sufferer will understand this never ending road of pain and suffering. If they did understand and knew how you felt, you would just know that they understood. It is an unspoken understanding a language from one chronic pain sufferer to another. 

How to cope with society 
Its time to find other sufferers you can chat with, others who understand how you are feeling whether on the internet or finding an a chronic pain association or maybe to a specific disease association, that you can attend support group meetings and maybe even get some phone numbers of others who are also suffering. It helps so much to share your pain it cuts in half when you share it.

Try and make sure, that you always have your pain medications with you while you are traveling or just out for lunch. It may save an outing if you do have your pain relief.

Find a documentary or video that may explain your disease or condition to your family or friends, this is a great way to try and make them understand. Visual is a lot easier sometimes than showing them a book. Articles are great, as long as they are not too long, boring and technical.

Family and Friends  
It is important to take a carer with you, when you are searching for help and treatment. Make sure someone drives you to doctor and pain clinic appointments, especially in the beginning. So they understand what is going on and the treatment you may have to receive.

Its very difficult to concentrate when you are in chronic pain and it helps if someone (a carer or family member would be ideal) is with you, at ALL your doctors appointments so you understand what has gone on and you don't leave the appointment not understanding or remembering what has transpired.

Friends and Partners... who just Don't Understand 
We have all lost friendships through being chronically sick or in pain or both. Some of us have lost partners and husbands, through being chronically unwell and in pain. Its devastating at the time but if these partners or husbands can not stick by us, in sickness and in health, then they were not really the person we are meant to be with. Someone who really loves us, feels our pain and suffering, they can not bare to see a loved one suffering. This is a true partner and husband, we are better off on our own, than being with someone who doesn't care and expects us to continue taking care of them, while we are sick and trying to care for ourselves, this is a toxic relationship get out before it kills you. They will never change.

Take Time for you, you need time to do something that makes you feel good whether its a walk along the beach or just sitting in the sun.

We can not help our moodiness, through sleepless nights and always being in pain its hard to focus, on much more than the pain we are suffering or experiencing but in time, if we receive help with our pain and counseling, we can learn how to deal with all of this BUT we have a lot to re-learn, a lot will be dealt with in counseling, learning to adapt to your new limitations and life, it is not easy and changing the way we do things. This all takes time and patience, its not an easy process but in time if we have love and patience and support from loved ones we are able to start again and regain our life and independence.

We took along time to become the way we are and things will not change over night, nor be will they be fixed it will all take time, patience and counseling and a good pain specialist and an understanding support group will help you more than you can imagine, especially the other sufferers.. who will become new friends and your new life will begin to unfold.

Lack of Sleep  
We all know what its like, Not to sleep for days and weeks and months on end its something you would not wish on your worst enemy. This is when a hot bath can help a lot. Discuss it with your doctor or counselor for ..there are different techniques that each doctor uses.

There are natural remedies like Chamomile tea, another called Sleepytime and some natural herbs available all that will relax you and help to get you off to sleep, (a naturopath can be of great assistance in this area).

A lot of Pain Doctors will use a combination of antidepressants and pain relief that should help in time, to get you back into a sleep pattern.

One way of trying to rectify this, is by staying up until 12 midnight every night or later, you may not go to bed before 12 midnight, and you are to wait until your eyes are ready to shut and only when you are this sleepy, are you allowed to go to bed. Then you must arise at 8 am and repeat this every night. If you do this for long enough, (meaning weeks or months), it will help you to retrain your sleeping habits, its a way of using behaviour modification and it really works and its easy.

ALSO See Progressive Muscle Relaxation In The Meditation and Relaxation segment

Do Not Drive if you are commenced on new medications, especially if they effect your ability to concentrate or make you sleepy. 
It may take up to a week before you feel stable enough to drive.

Some diseases may also cause migraines, as a complication and even some medications, may also cause major headaches.

A quick treatment for a migraine is an ice pack to the back of the neck and head. A glass of water sipped, with 3 teaspoons Glucose or glycogen powder mixed in, (as long as the patient is NOT a diabetic), will help with the nausea of anything related to chronic pain, including from a migraine and can be a quick and easy treatment if given early enough.

Internet  
Some of us are lucky enough to have a computer and we have explored and found and joined internet support groups. We then are able to talk with other sufferers, we share and create common bonds. This can be a great way to share your pain and to learn new ways to cope and deal with pain and life in general. There is so much information in cyberspace, its a matter of finding the most correct and precise information and not getting taken with people who promise miracle cures. There are a lot of quacks and fakes out there, be aware and always discuss new treatments with a support group and see if anyone else has heard of it. If its a new treatment or surgical aid, it is most likely to be circulating the support groups that deal with that certain disease or disorder.

This paper has been compiled through my personal experiences and through my nursing knowledge. Its important to know that we can all learn to cope and live with chronic pain. If we don't get help with our chronic, endless pain, in the end, it can and it will affect our entire body, mind and spirit. Don't let it, there is help available its up to you to find it.

Remember Chronic pain can be caused by many different things, diseases such as cancer, endometriosis, fibromyalgia, 
(myalgia, which means pain in the muscles), and many other types of diseases and disorders related to any part of the body and any of these can cause continuous, debilitating and chronic pain.

Try and take charge and don't let your pain rule your life, I know its easier said than done, there are others out there, who know and understand and who do care. These people can teach you to cope and help you to regain your life and adjust to your pain. I hope this paper helps you to find them.

Remember this is just a guide and you should always seek medical advice, especially if you are in extreme pain (See my Pain Scale  as a guide) let your doctor know ASAP. Keep a pain diary and take it to your next appointment. (Print out the pain scale and take it along with your diary) The only way they will know that you are suffering and in so much pain constantly, is if you tell the doctor and have it documented in your notes.

Good Luck, may your pain be managed and under control soon. There is always hope when there is faith, keep your faith, it will be there, when no one else is.

Click here for the Belle Brown Pain Scale

References:

Belle Browne RN Copyright 2001