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This is the Pain Program Page
from the Fibro FAQs
presented by
She Who Watches and Waits

[Note: Julie McConnell, the author, has combined information from the Cedars/Sinai Pain Treatment Program and her personal observations as a patient having successfully participated in this program.]

MY INTRODUCTION

13 March 1996, I finished a fifteen day stay at the Cedars/Sinai Pain Treatment Program (including Physical Rehab). The program is overseen by a Physiatrist. Hands on therapy was done with Physical Therapists, Occupational Therapists, Speech Therapists, Psychologists, Recreation Therapists, and a Biofeedback/Relaxation Specialist. I developed FMS after inhaling fiberglass insulation at work, so I have had the advantage of OWCP wanting me to get better, and after fighting for a year, they decided this would be productive. They got their money's worth!

To help FMS patients, in my humble opinion, putting together the stuff we need to do to get better, with minimal or no medication, would be the most practical and helpful. I had been completely unable to work, or function in any real capacity, for four years. Within two weeks, I had enough information and therapy to cut my meds by 95% and completely get off pain meds. I'm exercising daily, sleeping fairly well, but most important, I wake up feeling like ME again!

The things I learned included:

1. PHYSICAL THERAPY/PACING
I laughed at this, but in two weeks I went from gentle stretching exercises, to tough conditioning and riding 12 minutes on a stationary bike. Starting slow and increasing exercise AS TOLERATED will help you sleep, sleeping well reduces pain, reduced pain allows more exercise, and you get into a good cycle.

Pacing is defined as learning to rest before you get tired. Do everything at half of your normal speed. Any energy you conserve can be used to do things you want or need to do. Most of my fatigue has been managed this way.

2. OCCUPATIONAL THERAPY
Using shower chairs, grabbers for getting things from shelves or the floor, or disabled parking. If you can conserve energy by using these things, DO IT! Don't let anyone give you a hard time.

3. SPEECH THERAPY
Like most FMS patients, I suffer from fibro-fog. The O/T and S/T helped give me tricks to get around the areas where I had the most trouble, i.e., scheduling, time management, making lists, and breaking down chores or problems to tiny tasks. I also kept a log of what I did each day, what medication I took, etc.

4. PSYCHOLOGY
The psychology aspect of the program included cognitive testing, behavior modification, general counseling. I spent several sessions with the program psychologist. We re-did the entire battery of cognitive tests that I had done previously with someone who didn't understand FMS. We discussed the results and what they meant at length.

Other counseling involved learning to accept that I may have areas of disabilities, but can still achieve goals. I had to let go of my "all or nothing" attitude. Example: "If I don't vacuum the whole house, I failed," becomes "I succeeded in vacuuming two rooms today." This is a tough one for a lot of us. I want to return to normal, but I have to accept that my "new best" may not equal my "old best."

5. RELAXATION
Deep breathing, guided meditation, biofeedback, acupuncture, and other forms of relaxation can ease pain.

6. RECREATIONAL THERAPY
We sometimes forget how to play, just for fun.

When your energy is minimal, you use it for things that "need" to be done. Play is vital to good mental health!

SUMMARY: WHERE HAVE I HEARD ALL OF THIS BEFORE??
After several days in the program, I realized that at one time or another, during all of my research, I had heard most of this. What I needed was for someone to put it together and teach me how to incorporate it all into my life. As I started to do this, it became more obvious how logical and reasonable it is. I'm by no means "recovered," but I have almost no pain, can exercise and sleep, need no pain medication, and feel more like my old self than I have since I became ill!

ADMINISTRATIVE DETAILS
I don't know a lot of the admin details about the Cedars/Sinai Pain Program because it was covered by Workers' Compensation. I'll tell you what I do know and give you a name and number for more details.

1. The only waiting period was being on the list to get in, and waiting for a free bed. I waited about a month after OWCP's final OK to pay.

2. They accept state and federal Workers' Compensation, private insurance, and, I'm fairly sure, medicare. The program is located in the Physical Rehab Department, and divided into three parts. One is for people recovering from head injuries, another for people recovering from strokes, injuries or surgeries (like hip replacement), and the last for people diagnosed with illnesses that cause chronic pain. We fall into -- no pun intended- the last group. There are about 50-60 people in the program at any one time, and usually at least one with FMS.

3. The only "pre-screening" that I'm aware of is a diagnosed case of FMS, at least six months of chronic pain, and a doctor who can/will admit you. I don't know if any doctor can do that, but I can refer you to my doctor in LA for a consult. I know he can admit patients, and he helped develop the program.

4. The accommodations are great! All of the rooms at C/S are private -- I've stayed in worse hotels! Since many people there aren't mobile, all of the staff comes to your room for therapy. You may have visitors and receive calls after 4:00 p.m. on weekdays, Saturdays are half days and Sundays are free. You can order your own meals each day, within any dietary limits. Everyone, from the people who pick up laundry, to the head doctor (Dr. Ann Meyer, Physiatrist), is friendly and competent.

5. Do they know what they are doing? YES!!

6. The objective of the program is to give you the tools to live without pain medication. It consists of Physical Therapy, Occupational Therapy, Counseling, Relaxation Therapy, Biofeedback, and Recreation Therapy. They don't promise to make your life pain free. Instead, they teach you to use the tools you already have to deal with the pain. They don't give out medication, unless your doctor orders it. I was determined to get off what I was taking and get into better physical shape because my husband and I are 32, and it's time to think about starting a family. You will be asked what your goals are, you will keep a "memory book" of what you do each day, a P/T log to watch your body get better, and a pain log to really think about when and how everything affects your pain levels.

7. Contact
The admissions contact at Cedars' Sinai is Jan Thompson (310) 855-6271. You must be admitted by a physician, but she can tell you more about admission requirements.

From the Cedars/Sinai Chronic Pain Management Program

Introduction to the Cedars Sinai Chronic Pain Management Program This is to introduce you to the policy and procedures of the Cedars-Sinai Medical Center Chronic Pain Management Program and to provide you with some valuable information. It is extremely important that you take the time to carefully read this and all other written material that will be given to you while you are in the program. Any questions will be gladly answered by the pain management staff.

The fact that you are reading this means you have been suffering from some form of pain for at least six months. You have undergone many unsuccessful treatments to relieve your pain. This program will be quite different from those other traditional attempts at pain relief you may have tried.

First of all, the program does not do things to you or give you something to alter or remove your pain. Rather, our approach is to help you control and manage your pain by enhancing and strengthening your own resources.

Our approach to ongoing pain is based on the fact that pain is a complex phenomenon. It is known that pain, rather than being a simple physical symptom, is affected by activity, emotions, thoughts and environment. Thus, the staff works with you to learn about the various factors that influence your pain and help you to learn techniques that will help manage your pain. You can expect to be exposed to a variety of procedures such as physical therapy, occupational therapy, counseling, therapeutic recreation, and relaxation.

The goal of the program is to help you live a more satisfying, productive life, despite the pain. We do not promise to take your pain away and have no magical procedure to change your life. However, if you make the decision to become completely involved in your program, we can help you to manage your pain and increase your chances for leading a more gratifying life.

FACTS ABOUT PAIN

Most people view pain as a relatively simple situation. Pain is the result of injury or tissue damage where the intensity of pain is directly proportionate to the severity of the injury. In other words, if you hurt your finger, it hurts a little; if you break your leg, it hurts a lot. Pain research, however, has revealed striking instances that demonstrate pain does not correspond to such a simplistic phenomenon. In the following paragraphs, common misunderstandings about pain will be presented.

INJURY & PAIN

The idea that injury produces pain and pain results from injury make sense most of the time. There are however, many exceptions. It is very common, for instance, for soldiers who are seriously wounded in battle to report little or no pain for days after the injury! The same is true for some individuals who have undergone major surgery. On the other hand, in many low back pain patients, no identifiable injury is ever found! In short, pain can, and does exist in the absence of injury, and injury can, and does occur without pain. :

INJURY & AMOUNT OF PAIN

Just as the relationship between pain and injury does not always hold, the relationship is also not one that is perfect. Consider the amount of agony produced by a toothache and contrast that with the lack of pain experienced by the severely wounded soldier. Think of your own life and you will probably be able to think of times where small injuries hurt you more that larger ones; or times when you didn't even know you cut or injured yourself until you saw it.

PSYCHOLOGY & PAIN

While you are a patient in our program, you will be taught psychological techniques that will enable you to control your pain. Some patients believe that if they can manage their pain through the use of self-control techniques then their pain must be imaginary, or other people will believe their pain is "all in their head." Nothing could be further from the truth.

First of all, some of the psychological techniques (i.e., imagery) we teach are used by successful people in many walks of life to improve concentration, relaxation and performance. Athletes utilize mental techniques to improve their performance just as businessmen have methods to reduce the effects of stress. Secondly, all pain, both acute and ongoing, is greatly affected by emotions and attitudes. The psychological techniques you will learn are effective in managing pain regardless of the source and are consistent with the most recent physiological understanding of pain.

Throughout the program you will learn a great many things about pain, pain management, and health. This short introduction was meant to correct some common misunderstandings about pain and to help you develop a more helpful attitude toward your treatment that will enhance your learning. Hopefully, reading this will improve your knowledge and understanding of you pain problem which will aid in achieving a successful treatment outcome.

A MODEL OF PAIN

When our bodies receive an injury, signals are sent to from the site of the injury to the brain. The pain must pass through a mechanism in the spinal column that acts like a gate. How much the gate is open determines the intensity of the experience of pain. There are a variety of physical and psychological factors that influence how much the pain gate is open. The following list identifies some of these factors.

I. Factors that open the gate (increase pain)

A. Physical
1. Extent of injury or tissue damage
2. How "prepared" nervous system is to send pain signals
3. Inappropriate activity level

B. Emotional
1. Depression
2. Anxiety
3. Worry
4. Tension
5. Anger

C. Cognitive/Behavior
1. Focusing on pain
2. Boredom from lack of involvement in activities
3. Non-adaptive attitudes

II. Factors that close the gate (decrease pain)

A. Physical
1. Medication
2. Stimulation (heat, massage, acupuncture, TENS, acupressure)
3. Appropriate activity level

B. Emotional
1. Relative stability
2. Relaxation
3. Positive emotions (optimism, humor, happiness)
4. Rest

C. Cognitive/Intellectual 1. Involvement and interest in life activities
2. Intense concentration
3. Adaptive attitudes

While in the Pain Program, you will be learning how you can "close the gate" and manage the pain.

PAIN BEHAVIORS

People in pain behave in ways to accommodate to, cope with, and ease their pain. Those behaviors also communicate to others, verbally and nonverbally, the pain a person is experiencing. Below are some of the behaviors that seem to broadcast the presence of pain:

* Talking about pain
* Complaining about pain
* Moaning
* Grimacing
* Crying
* Being Irritable
* Decreasing body movement
* Resting an extremity (foot, arm, etc.)
* Lying down
* Rubbing or supporting a painful area
* Frequent change in body positions
* Reduced Activities
* Avoidance of certain activities or tasks
* Impaired interpersonal relationships
* Impaired sexual relationships
* Increase in amount of medication taken
* Seeking further medical/surgical treatment
* Seeking attention and sympathy

WELL BEHAVIORS

Behaviors that indicate that a person is feeling less pain are presented below. These are positive signs, or well behaviors.

* Decrease in amount of medication taken
* Increase in non-pain-related activity
* Walking and physical activity
* Self-monitoring and observation
* Setting realistic goals
* Ability to identify stressors
* Examination of alternatives
* Rewarding self for trying

Use of learned coping responses:

* Imagery
* Relaxation
* Mental Activity
* Physical Activity

*My note: I asked about this, since I would not have been diagnosed, or in this program had I not sought further medical attention. My counselor told me that this is more for people with "standard" illness (like hip replacement surgery, etc.), not people with the vast array of FMS symptoms who are being told they are not ill. There is a point where seeking further medical help can become obsessive. Common sense should prevail here.

WARNING

The information below is for ALL pain patients. It is not specific to FMS patients and the advice should not be taken as such.

THE ROLE OF THE SPOUSE, FAMILY OR SIGNIFICANT OTHER IN A PAIN MANAGEMENT PROGRAM

The importance of the role that the spouse, family or significant others play in the treatment of pain patients cannot be underestimated. Evidence suggests that high dropout rate of patients occurs when family members do not participate or invest themselves in the pain management program.

Pain affects everyone in the family as well as the patient. Pain often becomes the focus of all aspects of family life due to extra demands of the patient, trips to the doctor, hospitalizations and therapeutic regimens. The cost of medication can be prohibitive. Recreational activities and holidays are often sacrificed. Social and sexual relationships suffer. Family responsibilities become confused or reversed, resulting in feelings of resentment and confusion.

Spouses, families and significant others often experience as much distress as the patient. Anger and resentment accompany altered lifestyles. Guilt for experiencing such feeling toward a helpless, suffering person creates emotional pain. The feeling of helplessness is often overwhelming.

Family member interactions may contribute to pain behaviors. Significant others sometimes enjoy being needed and cater to the dependency needs of the patient. Sometimes a "conspiracy of silence" develops between the patient and significant others where neither acknowledges the pain behavior and neither person's needs get met. Often significant others and families unwittingly reinforce the pain syndrome by protecting the patient from what they consider to be stressful issues. As well-meaning as such behaviors may be, they are NOT helpful.

Significant others, families and spouses can help by:

* Jointly establishing realistic and desirable treatment goals. The goals can be short medium or long term, and could include such thing as reduction of medications, less time lying down, specific tasks at home or on the job, recreational activities, and re-establishment of social and sexual relationships.

* Observing the patient's pain behavior:
a. making a list of 5-10 pain behaviors
b. recording how much time the patient exhibits these behaviors
c. monitoring what he or she does, thinks and feels in response to the patient's pain behavior
d. recording the impact of the patient's behavior on family and friends

THE IMPORTANCE OF RELAXATION IN PAIN MANAGEMENT

RELAXATION is as much a state of mind as it is a physical state. Listed below are ways in which relaxation counteracts pain:

I. Muscle tension increases pain.
A. Relaxation reduces pain caused by muscle tension.

II. Focusing on the pain, increases the sensation of pain.
A. Relaxation reduces pain by directing attention away from the pain.

III. Feelings of anxiety, frustration, and tension increase pain.
A. Relaxation is incompatible with feelings of anxiety, frustration, tension and pain.

IV. Feelings of helplessness.
A. Relaxation gives you something to do before, during and after you experience the pain.

V. Lack of sleep lowers tolerance for pain.
A. Relaxation helps reduce sleep disturbance and provides increased capacity to tolerate pain.

VI. Emotional upsets increase pain by opening the pain gate.
A. Relaxation helps create emotional calmness which serves to keep the pain gate closed.

Relaxation is a skill which can be learned and which improves dramatically with practice. Recommended practice time is at least three 10-minute periods per day, regardless of your pain level. With sufficient practice, a person can develop the ability to relax at will at any time, in any circumstance.

Relaxation is not only beneficial in the treatment of pain, but enhances the functioning of the entire body by reducing the effects of stress. It is essential to good health and is a skill worth developing.

Julie's Note: This is also terrific for stressed out spouses, families and significant others.

PHYSICAL THERAPY/PACING

I laughed at this, but in two weeks I went from gentle stretching exercises, to tough conditioning and riding 12 minutes on a stationary bike. Starting slow and increasing exercise AS TOLERATED will help you sleep, sleeping well reduces pain, reduced pain allows more exercise, and you get into a good cycle.

Pacing is defined as learning to rest before you get tired. Do everything at half of your normal speed. Any energy you conserve can be used to do things you want or need to do. Most of my fatigue has been managed this way.

The first thing they tried to do was make me aware of my body. I was told to do all of my normal activities at half speed or slower. Whenever I started to feel tired, I immediately stopped. Gradually, I learned to stop BEFORE I got tired, and PACE myself. This has done more for the debilitating fatigue than anything I have tried -- and I spent the first eight months of this illness with virtually no pain, just sleeping 22 hours per day from fatigue! Slowing down had two advantages. I learned to listen to my body, and save my limited energy. People with chronic pain and fatigue MUST learning to listen to their bodies!

When you consciously make an effort to slow down, you may be surprised to discover how much energy you waste. One of my biggest problems was trying to hurry through tasks in order to "beat" the fatigue. Doing things quickly just brought it on faster. By slowing down, pacing my activities, and taking frequent rest breaks, I very rarely suffer from the "can't even move" fatigue. I still get tired easily, but pacing myself prevents the "over did it" fatigue that can last for days.

I had two sessions of physical therapy daily, gentle stretching each time. Harder conditioning and walking were added after a few days, and I was on the bike for 5 minutes within one week. Today, I do warm ups and about 20 minutes of hard conditioning stuff, and ride 25 minutes on my bike. I also internet, do some housework each day, and relax, and do something fun. Of course, I don't feel wonderful every day, and I have had some setbacks, but overall, this is the best I have felt since I got sick.

The most important things to remember while exercising are don't overdo, and don't do anything that hurts! Overdoing will cause setbacks, including fatigue, and prevent you from sticking with it. Anytime that you do an exercise that hurts -- beyond the "feel good pain," stop immediately and try something easier. Some people progress very quickly to harder exercises, and some take longer. Listen to your body, and don't compare your progress to what you "should" be doing. (This will be addressed under counseling, too.)

PHASE I - WARM UP EXERCISES

Directions from Julie: I do these exercises on a floor mat, while listening to my favorite music. TV is OK, but nothing that will upset you or distract you from your work. Wear loose clothing, and shoes are optional for mat exercises. You will probably want to wear them for standing.

NEVER keep doing any exercise that hurts! You should feel a tight stretch, but not pain, while doing these exercises. If your muscles begin to tremble, you are OVERDOING!

Hold each position for 1-5 seconds to begin, with 1-10 repetitions, AS TOLERATED. This will not happen overnight! It may be weeks before you can hold some of these for more than 1 or 2 seconds. Don't give up! Even that little bit of stretching will help your flexibility.

After you can hold each exercise for at least 5 seconds, with 10 repetitions (known as one "set"), begin to aim for holding each for 10 seconds. Use the same criteria to decide when to add more repetitions, up to 15. When you can do one full set of these exercises, holding each for 10 seconds, with at least 5-10 repetitions, you can try Phase II.

* Do not hold your breath.
* Do all the exercises slowly.
* Work for smooth and controlled movements.

DISCLAIMER FROM JULIE: THESE EXERCISES ARE PROVIDED FOR YOUR INFORMATION ONLY!! DO NOT START ANY PHYSICAL FITNESS PROGRAM WITHOUT CHECKING WITH YOUR DOCTOR FIRST! I AM NOT RESPONSIBLE FOR ANY INJURIES RESULTING FROM THESE EXERCISES!!!

SUPINE (Lying on Back)
* GLUT SETS: With knees straight, tighten your buttocks.
* QUAD SETS: With both knees straight. Push knees down onto the mat by tightening front of thigh muscles and pull toes up towards you by tightening from of lower leg muscle.
* HAMSTRING SETS: With on knee bent, attempt to dig your heel downwards and towards you without knee movement.
* PELVIC TILT: With both knees bent, push the small of back into the mat by tightening abdominal muscles and buttock muscles at the same time. Your upper body should remain still. When you feel your back lying flat against the mat, you are doing this properly.
* ANKLE WAVES & CIRCLES: With knees straight keeping heels on mat. Pull ankles and toes up towards you, then point down. Next, rotate ankles clockwise, point down, then counterclockwise.
* AXIAL NECK EXTENSION: Push head down onto the mat while touching chin in.

SITTING (or STANDING)
* *NECK CIRCLES: Rotate neck clockwise, SLOWLY, then counterclockwise.
* FLAT NECK: Keeping head back, tuck chin in and feel front of neck tighten.
* *SHOULDER SHRUGGING: Pull shoulders up towards ears, slowly lower and repeat.
* *PINCH SHOULDER BLADES TOGETHER: With elbows bent at shoulder level, pull elbows backward and bring shoulder blades closer together.
* CHEST & BACK STRETCHING: Interlock fingers behind head. Bring elbows back as you inhale, then exhale slowly as you bring elbows together and towards knees.
* DIAGONAL ARM EXERCISES: With fists at opposite hips, stretch arms up and out at the same time. With fists at opposite ears, uncross arms as you bring them down and out.

* These exercises can be done anytime, and are really helpful for tightness due to computer use!

PHASE II - CONDITIONING EXERCISES

SUPINE (Lying on Back)
* PELVIC TILT WITH KNEES STRAIGHT: Push the small of back into the mat by tightening abdominal muscles and buttock muscles at the same time. Hold.
* SINGLE KNEE TO: With knees bent, bring one knee up towards your chest and hold.
* STRETCHING FRONT OF HIP MUSCLES: Bring one knee towards your chest, while keeping other knee straight. Press straight knee down into mat and hold. Repeat with other leg.
* DOUBLE KNEE TO CHEST: With knees bent, slowly bring one knee up towards your chest, and then the other.
* PARTIAL CURL UPS: With knees bent, maintain a pelvic tilt, while reaching towards your knees. Only raise head and shoulder blades off mat. Hold
* STRETCHING INSIDE OF THIGH MUSCLES: With knees bent, allow knees to drop towards mat and hold.

PRONE (Lying on stomach)
* SHOULDER RETRACTION: With arms at sides, pinch shoulder blades together and hold.

SITTING (or STANDING)
* *BACK EXTENSION: Clasp hands behind back with elbows straight, pull arms toward head while keeping back straight. Hold.
* *STRETCHING SIDE OF TRUNK MUSCLES: Alternating arms, reach for the ceiling.
* *BACK FLEXION: Slowly reach forward, bring head towards knees. Hold
* LONG SITTING: Sitting with knees straight, hold, and let feet fall back down.
* STANDING
* *BACK EXTENSION: Place hands on small of back and slowly allow back to arch. Hold.

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