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Condition

Brianna's Story

Andrea's Story

Matthew's Story

Gray's Story

Simone's Story

Ryan's Story

Ann

Stacy

Sam

Taylor

Matthew

Andrea

Morgan

Marissa

Ann     age 20, female

 

I was diagnosed with RSD/CRPS when I was 12 after fracturing my ankle. I saw 18 different specialists, all of which tried different techniques that only provided temporary solutions, if any at all. I had nerve blocks, high dosages of drugs and several tests that made me feel more like a lab rat than a teenage girl. I had to use an electric scooter or wheelchair to get around, because it was too painful to walk. Doctors said I was imagining the pain, and even those who believed me didn’t know how to help.

 

When my parents and I first met Dr. Zeltzer, we were so encouraged that she wanted to help and more importantly, that she knew how to. Over my time with the UCLA team, I saw several members of the team for different therapies and learned different techniques from all of them on how to realistically deal with RSD. Their combined treatment programme helped me manage the pain and get my leg strong enough to walk again, but the best thing that Dr. Zeltzer and her team gave me were the tools to be able to deal with my RSD without constantly seeing doctors to help with the pain.

 

I still do my physical therapy and hypnotherapy regularly, but my pain is very manageable now. I now live in London, where I teach and study Shakespeare. I have a very full life and RSD only plays a minor role in it, mostly thanks to the UCLA team and the techniques they taught me.

Stacy     age 25, female

 

Before I came here I was at the end of my rope and at a loss for what to do and how to get better. I had tried everything you can think of… mud, herbs, acupuncture, magnets. They gave me side effects and parasites and bacterial infections. Every doctor said, “I can’t help you.” It was devastating.

 

I went to my friend’s gastroendocrinologist who could help me, but recommended I come here. I hooked up with Dr. Z and went from having no life to an amazing life that I love. I was sleeping all day and night and couldn’t function. I was too exhausted to have a conversation. I didn’t go to college and lost six years of my life.

 

With the tools, medicines, and exercises, and trial and error, I have come full circle. I am now holding down three different jobs. They worked with me and were very understanding. When I had feelings that I didn’t like something we were doing, Dr. Zeltzer listened. She was open to working with me to find the whole package to make me whole. My bad days are nothing compared to my bad days before, which used to keep me in bed in the dark lying there in agony. The combination of medicines and learning to relax the muscles is what’s made the difference. The other doctors have a plan you have to fit into. They say you need a psychiatrist because you don’t fit into their plan.  Dr. Zeltzer’s plan is an evolving plan which you change to fit your needs.

Sam     age 20, male

 

At other clinics they are more toward using medications. Here there are also alternate treatments like physical therapy. I was at another clinic and they wanted to do Botox. Here there was a long list of treatments that are not drugs and are more natural. The alternative treatments have helped more than the drugs with working with the pain and working through the pain instead of sitting and waiting for the medication to make it go away.

Taylor     age 17, female

 

I didn’t know if the clinic was going to help me because I knew pain therapy was with the mind and body, but I didn’t know how they went together. When we got in there and Dr. Zeltzer asked me the questions, I kind of had heard some of the information before, but I understood more about it so it helped me understand what was going on with me and that I wasn’t going crazy.

 

Hearing that other people had the same thing made me feel not so alone. I don’t have to deal with it by myself anymore. I know that other people know how I feel.

Matthew     age 13, male

 

The pain clinic was good because I went to a whole bunch of other doctors, but the pain clinic got it right on the first try. The team approach introduced me to other doctors and therapists... some were great and some didn’t work out, which was okay. They’re awesome here... they’re really nice. Here they knew exactly what it was and it’s already better. It is comforting to know they’ve seen it before and they are confident they can treat it. They always respond right away if I have a problem, even if it’s on a Saturday.

Andrea     age 15, female

 

It’s a lot different than other doctors because they put it on a personal level and see what’s wrong and figure out ways to fix it. They have a goal to make it happen. Other doctors would test for something, and if the test came back negative, they would just send me to another doctor. I started with an orthopedic doctor who couldn’t figure out what was causing the pain and then I went to a neurologist who couldn’t figure out where my pain came from. The other doctors’ goal was to stay in their plan. Here the goal is to get to my personal plan and health – not theirs.

Morgan     age 17, female

 

Everyone was very nice and friendly. For one and a half years, I went to one doctor after another who didn’t know what to do and just kept sending me to another doctor. Here I learned a lot that I had no idea was wrong with me. I can’t wait to come back and try my new medicines and everything. Instead of a million tests, the exam was different and there were different options to do, other than just medicine or taking another test.

Marissa     age 16, female

 

They actually did something. They told me my pain was real and not just psychological. The other doctors told me what I didn’t have and how they couldn’t help me. Here it was about me and what they thought was going on with me.

By Therapy

 

Hypnotherapy / Imagery

 

Jack is a five-year-old who has had chronic headaches since the age of four.  Typically he gets one every other day. When they occur, he cries continually and is usually inconsolable, demanding more and more attention from his mother.  Jack was diagnosed with childhood migraines.  Medications provided by the neurologist gave intolerable side effects with no relief.  Recently, however, Jack’s mother has learned a series of relaxation and imagery techniques, which she and Jack practice together.  When the pain first starts, Jack and his mom lie down together and begin by taking long deep breaths.  Jack’s mom urges him to relax and think about something he likes to do such as playing on a swing in the park.  Jack’s mom begins by describing the sights, sounds and feelings of the park and then asks Jack to describe them and also to notice how comfortable and relaxed he is feeling as he continues to breathe deeply.  After several weeks of practice, Jack is able to relieve much of the pain. He has also discovered that he can sometimes stop the headaches on his own when his mom is not around.

 

Dr. Lonnie Zeltzer tells the following story about her early experience learning to practice hypnotherapy.

 

I attended a workshop on hypnosis and pain at the annual meeting of a scientific hypnosis society.  The psychologist who was the workshop leader had asked for patient volunteers with whom to demonstrate techniques of hypnosis.  I invited an older teenaged patient of mine, Gerald, to come to the meeting. Gerald had sickle cell disease with recurrent bouts of pain. (He was called a “frequent flyer” by the our  pediatric residents because of his frequent use of the emergency room for medication “shots”  for pain episodes.)

 

The psychologist helped Gerald to attain a deep hypnotic state in a matter of minutes and urged Gerald to relax and breathe deeply, taking in more oxygen.  He told Gerald that his mind would “know” when a sickle cell crisis was about to come and that his mind would help him take deep breaths at those times to prevent the sickle cell crisis.  (Low oxygen can precipitate a sickle cell crisis and giving oxygen can help during a sickle cell crisis, but there are no studies documenting the prevention of a crisis by breathing deeply).  Gerald left the meeting feeling “different,” but he couldn’t explain how or why.

 

Gerald had previously been meeting with me for hypnotherapy sessions where he would go to his “favorite place” (usually that meant with his girlfriend anywhere).  He had always felt relaxed at the sessions but nothing special had happened to his sickle cell pain episodes.  However, during our next session after his experience with the psychologist at the hypnosis workshop, rather than going to a “favorite place” that consisted of imagining being with his girlfriend, Gerald began to have images of sewers overrun by rats, and a huge hose with high pressure water that would wash out the rats and garbage.  In his hypnotherapy sessions with me, he continued to imagine this set of images.  He explained that these images came to him when I asked him to imagine what happened in his body during a sickle cell pain episode and to imagine what he would need to do in order to “undo” the pain episode.  After four months, Gerald was going to the emergency room less often and was taking lower doses of pain medication.  Several years later, Gerald received Emergency Medical Technician training (EMT) and became the first ambulance driver with sickle cell disease in Los Angeles

 

Acupuncture

 

Eight-year-old Sammy liked the “sleepy” feeling that he would get after the acupuncture session.  He said that in the beginning, he was a little afraid of the needles because it always hurt when he had needles at the doctor’s office.  But he said that “Dr. Michael” let him hold one and even put it into his arm and that it felt “weird” but didn’t hurt.  He said that he would sometimes get a little “buzz” when the needles first went into his body but that went away and he felt calm and relaxed, “…kinda like I was sleeping or dreaming but not quite.”  Sammy said that being in our acupuncture research study and having “Dr. Samantha” talk with him and remind him to imagine being in his favorite place together with the feel of the needles was the “best feeling of all.”  He said that he “really really got relaxed” with both of those things together.

 

Iyengar Yoga

 

Jenna, a young woman in her early twenties, came to study with me after being diagnosed with rheumatoid arthritis. Depressed and frightened by the prospect of living with a chronic, debilitating, and painful disease, she came to the UCLA Pediatric Pain Program looking for strategies that could improve her health.  She decided, along with taking the medications recommended by her rheumatologist, to try yoga.

 

In the months leading up to her diagnosis, Jenna’s quality of life had deteriorated rapidly.  In September she was healthy and active, playing volleyball, hiking and rollerblading.  By April, the smallest movements were painful.  She walked slowly with a limp, it hurt to roll over in bed and she needed help to brush her hair.  Jenna experienced pain, tenderness and/or swelling in almost every joint in her body—feet, knees, hips, shoulders, elbows, wrists, fingers, neck, and jaw.  Beth (yoga instructor) wanted her to know that no matter how bad it got there was something we could do that would help.  We might not make the problem go away completely but we could give her some relief.

We began with mostly passive inversions and passive backbends. She hung upside down on ropes, and lay over chairs and bolsters.  The inversions would help her immune system and the backbends would lift her mood.  Eventually Beth taught her certain poses, like handstand, to give her a feeling of confidence and optimism.  Even for students without health problems, there is something unbelievably exhilarating about kicking up into a handstand.  When Jenna kicked into handstand, she used a slant board under her hand because of the problems she had in her wrists.  She found that the pose actually made her wrists feel better and improved her range of motion.  Soon she was doing standing poses with a quarter round [a wooden block that is a quarter of a circle and is used to ensure proper alignment in the leg] under her foot to help with the pain in her feet, ankles, and knees.  If something in particular was causing her pain, Beth made sure to address it in class with specific poses that brought relief.  Beth also encouraged her to practice on her own at home as she needed to.

 

Over the next several months, Jenna’s health improved rapidly.  By fall, she was walking normally and, by the next spring, she was pretty much back to normal—active and fully functioning. Most importantly, when she experiences pain related to RA, she knows what to do to bring relief, and when she is feeling depressed she knows how to lift her mood.  Iyengar Yoga gives Jenna a feeling of joy, accomplishment, and confidence.

 

Below is a portion of a letter Beth received from a 14-year-old yoga student:

 

Very early on, I discovered that yoga makes you fix problems yourself.  It also worked much faster than any of the other treatments and the results lasted much longer.  I learned that my headaches were a result of deeper problems and headaches were the way my body let me know something was wrong.  Yoga made me fix my headaches myself, and not rely on medication or a machine to solve my problem.  And if I ever get headaches again, I know what to do.

 

Physical Therapy

 

Sean Hampton, M.P.T, a longtime physical therapist in our Pain Program (and Director of ADI REHAB) talks about PT in children with chronic pain.

 

While electrical stimulation can be helpful in treating chronic pain, physical therapists employ many other treatments to help your child get back to an active life.  The therapist may also use manual hands-on stretching and mobilization treatments to help stretch out muscles, joints, and nerves that have become tight over time and with decreased activity.  The therapist must have the ability to make therapy fun and interesting for children.  The therapist must establish a trusting relationship with the child for many reasons.  The child with chronic pain may have seen numerous professionals that may have let him down.  Every chronic pain patient is told “I will help you get rid of your pain.” When the child puts trust and hope in those promises, he may ultimately be let down when the pain does not go away.  When this happens over and over, often with painful evaluations and procedures occurring along the way, the child with chronic pain may start to look at all practitioners with skepticism.

 

Michelle came to see me for severe complex regional pain syndrome (used to be called RSD) of her lower extremity and was very skeptical of all therapists, especially when it came to touching or moving her legs.  She had resisted any movement of her legs with every therapist and was continuing this behavior with me.  I had asked her to bend her knees and Michelle demonstrated virtually no movement with her knee.  I asked Michelle if that was all she could do.  Michelle replied ‘yes’ and wanted to know if I thought that she could bend them more than she demonstrated.  Now, I had seen her move her knees more outside physical therapy.  In this situation, most people and physical therapists may want to challenge a patient like this.  They may choose to tell her that they saw her move her leg more before on her own.   However, because Michelle had lacked trust in her previous physical therapists, she had limited to no success with her therapy in the past. Realizing this, I knew that it was more important to gain Michelle’s trust than to challenge her ability to move.  If I had challenged her perception of what she was able to do or not do, Michelle would have assumed I did not believe her, that I thought she was faking her pain, and she would have grown distant and uncooperative during our sessions.  I simply waited until Michelle had gained confidence in me and in her abilities.  And this approach paid off; little by little Michelle was able to do more in physical therapy, and the more she could do, the closer she came to recognizing that moving her legs was within her control. Soon she was able to acknowledge the leg movements she had been making all along. This was an exciting new discovery for Michelle.

 

Dr Zeltzer tells the story of Karen.

 

Karen, a 4th grader with complex regional pain syndrome of her left knee, was in a wheel chair when I first saw her.  She had been to other physical therapists before she came to our program and found physical therapy too painful.  She believed that it made her condition worse, and thus she resisted it.   Karen’s parents were suffering too from watching their daughter and were distraught, unsure whether making her go to physical therapy was the best thing to do for their daughter.  When I suggested physical therapy as a part of the treatment plan, Karen and her parents became visibly anxious. I  suggested that they just go for one visit and then they could decide if they wanted to continue.  I had talked with Sean about Karen and her previous experiences with physical therapy and he knew that he had to form an alliance with her before she would do the physical work that she needed to do.  He spent his initial session getting to know her and finding out what her interests were. He used what he learned to develop games that interested her so that he could get her to move her body in the way that he wanted her to.  He worked with Karen’s family to develop motivations or rewards for when Karen reached certain milestones.  Once Karen started working with Sean, her progress was immediate.  She traded her wheel chair for crutches, and soon she had no need for crutches either.  Her pain significantly improved and she was playing ball and other running games with her friends within a few months.  Sean sensed that part of the original problem with physical therapy was that Karen did not trust her own abilities and feared the pain.  As he showed her that she could do certain things well without pain, physical therapy became fun, and Karen was able to take greater and greater risks with her body.  She also liked and trusted Sean, which helped her to trust herself.   And by seeing her own accomplishments, she felt more capable and could do more.

 

Art Therapy

 

Dr Dreifuss-Kattan, our art therapist, tells the following story.

 

Joe, who was referred to me through the pain clinic, was a withdrawn, stressed, 16-year-old gifted high school student with severe chronic headaches.  He completed a scribble drawing in the first consultation.  Filling in the colors, he recognized a bird with a huge head, with a red area, a small body and tiny wings.  Joe’s chronic, severe headaches, which had made him dependent on medication, were surfacing unconsciously in the big-sized head of this bird.  Together, we realized how the oversized head made it impossible for the bird to take off, fly to his own place, away from his overprotective mother and the parents’ marital conflicts.  Joe’s love of art and his ability to express his pain through his artwork and also to ‘understand’ his pictures brought him joy and relief.

 

Family Therapy

 

Tom is a bright and witty 12-year-old with recurring abdominal pain.  His pains reliably occurred every weekday morning when he had to get ready for school.  Tom’s morning pain symptoms often involved crying and screaming.  His pains had caused him to miss significant amounts of school, but usually improved by the late afternoon, at which time he would go to play outside with his friends.  Tom had developed anxieties about going to school, partly as a result of his mother’s belief that the school staff was not sympathetic to his pain problems.  Tom was convinced that he could not be at school and cope with his pain at the same time.

 

The first goal of family therapy was to change Tom’s mother’s perceptions about the school by developing an agreement (a signed contract) among the school principal, nurse, Tom, and his mother, in which Tom would be allowed certain privileges at school (e.g. lying down in the nurse’s office when he was in pain).   In return, Tom’s mother was to get Tom to school every day.  In the beginning, the plan was for Tom to remain at school through first period.  His time at school was increased gradually each week and he received incentives for his ability to cope with being in school such as going outside to play with his friends.  Soon Tom’s mother was able to get him to school and was less anxious about what might happen to him while he was there.  In turn, once Tom sensed his mother’s changing attitude toward the school and he became confident in his own ability to stay at school for increasing amounts of time, he was able to go to school more easily, he became interested in some of his classes, and his pain lessened.

 

Individualized Patient/Family Psychological Intervention Plan

 

Glenn is a 14-year-old who suffered with headaches.  The headaches were causing him to sleep poorly so that he said that he was always tired during the day.  Sometimes he was so tired that he refused to go to school because he just “couldn’t get out of bed.”   At other times, he said that his headaches were too bad to allow him to go to school.  Glenn began missing more and more school.  When he did go to school, he had two “sort of” friends, the computer geek and the math whiz.  However, he found school stressful, because he had difficulty relating to most of the other kids, whom he thought were all “too dumb.”

 

An evaluation of Glenn indicated symptoms of Asperger’s Syndrome.  He was very smart, excelled in math and computer science, and there were other signs for this diagnosis.  He was very logical and could be very argumentative, often not “giving up” in an argument at home until he drove his parents crazy.  We realized that the stressful part of school for Glenn was the social interaction rather than the academic work.  He was referred for social skills training in a group format so that he would learn some of the social skills that didn’t come naturally to him.  For example, he had to learn how to let others children “be right” some of the time and not argue them to death.   He had to learn how to make eye contact and smile more, especially if other children smiled at him.  He got to practice these skills with other kids similar to him and they all learned together.   An incremental plan was established for Glenn to go back to school full time, and he learned biofeedback to control his muscle tension that contributed to his headaches.  With the combination of biofeedback, social skills training, and a school re-entry plan, Glenn was able to fall asleep better on school nights, awaken more easily in the mornings, and eventually attend school full time.  In the group therapy, he also learned how to participate in school in ways that took advantage of what he was good at—he joined the debate team and set up “mind-game puzzles” on the computer for the school newspaper. (Typically only he and his two other friends could figure out the answers and he loved that!)

 

Post-Traumatic Stress Disorder & Pain

 

Faith is a 13-year-old who had had a successful heart transplant. However, she had many post-operative problems, especially with one of the catheters that carried blood in and out of her body.  It had to be replaced once and she had a lot of painful surgical manipulation in that area of her body.  When she was last in the hospital, before I first saw her, the catheter fell out while she was in the bathroom alone and she started bleeding and became panicked.  Her anxiety rose quickly and the pain circuits relating to her catheter site became “turned on” and she immediately developed severe lower belly pain near the area where her catheter had been.  The catheter was replaced, but the pain continued. None of the cardiologists or surgeons could figure out what was causing the pain even after many tests.  Because they couldn’t find a “fixable” cause, they didn’t know what to do to reduce her pain.  When they gave her typical opioid pain medicines, she would just go to sleep, awakening still in pain.  Fortunately for Faith, these doctors understood their own limitations in pain treatment and referred her to our program.

 

We diagnosed Faith with post-traumatic stress disorder (PTSD) resulting from her many surgical procedures and especially from the bleeding episode in the bathroom.  The PTSD had caused a change in her neural arousal system so that even low levels of pain were hard for her to bear, and she had flashbacks of the bleeding episode, trouble sleeping, and intrusive thoughts about her hospital experiences.  The pain signals from her catheter site kept sending pain signals to her brain in a neural loop that kept the pain going.  We used one medication to calm her heightened nervous system and PTSD symptoms and another aimed at her nerve hyper-excitability.  We then referred Faith to a psychologist to help her to talk about her stressful hospital experience and to face her fears.  She learned skills to overcome the anxiety she felt when she thought about that experience and, over time, she was able to revisit the hospital ward and feel Ok there.  Currently Faith is almost off all pain and anxiety-related medications.  She is going to school, has friends, and is physically active.  She no longer constantly worries about her heart or being hospitalized.

 

Family Therapy

 

18-year-old Jennie reflects, below, on when she was 10 years old and had CRPS and was in a wheelchair because her legs hurt too much to walk.

 

I have an older brother and an older sister.  It was very difficult.  My brother was a freshman and my sister was going off to university.  It was an important time in their lives and a lot of my parents’ attention was focused on me, and I was completely dependent on them for my movement…I couldn’t do anything on my own…I couldn’t go to the bathroom on my own.  I think there was some resentment, definitely, but they never showed it.  But I am sure it was difficult for them to accept.  We went to family therapy.  It was difficult.  But the sessions were helpful. It made my parents more aware that my brother and sister needed extra attention.  It was an opportunity for me to tell them what I was going through, at a time when it wasn’t an argument or a fight.  It was Ok for them to say, I am angry that this is happening.  I think one of the reasons I have recovered is because of my parents.  My parents gave me my space and independence as much as they could.  We had just moved to California from Canada two years earlier and all our family was in Canada, so they didn’t have a support system…to get a break from things. They were extremely patient, they never blamed me, they understood I was in pain.  As much as it was a difficult time in my life, if I could, I wouldn’t change a thing.  I consider that I am the person I am today because of what I went through. I  have an incredible relationship with my parents, especially my mom, because we spent so much time together…we went through so much emotionally and physically together…that it’s just a really special relationship.

 

I am studying psychology and am debating whether I want to go to medical school.  It’s kind of funny, because at the time I hated the psychologist, she was the tough one.  Getting me to talk was torture.  I was the kid who was the pleaser.  I didn’t want to cause any problems. I didn’t want to talk about the things that were bothering me…my depression, or my anger.  Those are the things I needed to do.  I kept a diary as a release.  I didn’t keep track of improvements, because then I felt bad, like I wasn’t trying hard enough if I regressed a bit.  But having a place to release emotionally was helpful.  At one point I was keeping track of how many steps I could do on the crutches and I really didn’t like that. I f I had a bad day it ended up stressing me out more if I was keeping track.

 

PS: Jennie graduated from college and is now a medical student.

 

Anxiety Disorders & Cognitive Behavioral Therapy

 

Angela is a 13-year-old with irritable bowel syndrome that was causing her such severe belly pain that she was unable to return to school after the winter holiday.  She also had a generalized anxiety disorder (lots of chronic worrying about missing school, getting behind, not getting A’s, not being able to make the basketball team, her parents’ health, her father’s job, her sister’s asthma, etc.)   Angela began focusing on her belly pain in the mornings before school and according to her, she “tried to go to school” but was unable to and she worried that even if she forced herself, she would never be able to stay in school because of her pain.  Soon she began worrying the night before school.  All of these worries made her pain worse and worse, and she was missing more and more school, and getting further behind.  Since Angela had been a straight ‘A’ student and was a perfectionist, she worried constantly about getting behind and not being able to get ‘A’s’.  We referred Angela to a psychologist for CBT.

 

The psychologist first helped Angela figure out what kinds of situations made her feel tense and have more pain.  Angela realized that it wasn’t school in general that made her anxious, but some bullies at school who had made fun of her just before the winter break.  She had not been back to school since.  She had identified a significant and specific problem that was stressful for her.  Angela learned some strategies to reduce her anxiety when she thought about going to school and seeing these students.  She learned a technique known as “thought-stopping.”  When she began thinking catastrophic thoughts (e.g. they are going to laugh at me and get everyone in the school to laugh at me, she would tell herself, “stop…this is not going to happen…I can handle seeing them.”)  Angela also learned some breathing exercises to calm herself when she felt her heart beginning to race or her hands becoming sweaty.  She developed a plan for what she would do at school when she saw the other students and figured out how she might react in a couple of different scenarios, depending on how the girls behaved toward her (e.g. if they looked at her, laughed, pushed her, etc.)  Angela practice this plan in her mind first and then role-played it with her therapist.  She was able to go to school and, even though the girls laughed at her, as she had feared, she was prepared for it, and she was able to ignore them and feel OK.  This made it easier for her to return to school the next day.  As her stress about going to school lessened and she felt more competent, her belly pain also got better and she was able to easily get caught up in the work she had missed and continued to make all A’s.

By Condition

 

Complex Regional Pain Syndrome (CRPS)

 

Complex regional pain syndrome (formerly known as reflex sympathetic dystrophy or RSD) is a debilitating painful disorder of a part of the body, often one or both of the extremities (although it can be anywhere on the body).  Pain may occur after a minor injury or surgery but also may occur without an obvious prior event.  The pain is often described as a burning, squeezing, or stabbing/shooting pain.  The hallmark of CRPS is that the affected area is super-sensitive to even light touch, has the type of pain noted above, and often interferes with the use of the leg or arm if that is the part affected.  Sometimes, there is swelling and color changes (red/blue).  There may be skin and hair changes from lack of touch to that body part.  The muscles may weaken and shrink from non-use.  Below, two children describe what CRPS feels like to them:

 

I sometimes feel like someone is taking a torch of fire to my ankle when I walk on it; it feels like a lightning bolt is going up my leg. Sometimes when I bend or move it feels like it is going to explode.  It is so sensitive that I can’t wear my jeans and I have to wear baggy pants all of the time.  If someone tries to touch my leg during physical therapy I go through the roof in sharp excruciating pain.  Or even if someone accidentally bangs my knee, it seems to be worse for the rest of the day.

 

If I had to describe the pain in my leg, I might describe it as numb, but I really don’t think that’s quite right.  It’s not numb like you get with epidurals.  First, there is the lack of it feeling stable, because of a pins and needles feeling, which is really disturbing, and it doesn’t want to move normally, and won’t take my weight, and then there is a circulation being-cut-off kind of numbness.  I get shooting pains but not all the time.  Most of the time my leg seriously aches, feels like it’s being crushed and generally being eaten up from the inside (I know that sounds strange but it’s a description I developed a while ago for this cold burning kind of feeling).

 

The painful body part is often sensitive to light touch; even a brush of clothing, water, or a light breeze can be excruciatingly painful, and any contact with that sensitive area (such as someone accidentally bumping it) can cause more severe pain.  A child with CRPS-1 may not want to wear shoes or have the sheets touch that part of her body at night, which may lead to sleep problems.  Because the child is often afraid of someone touching the painful body part, she may attempt to avoid school or other social events.  Additionally, the painful body part might become sensitive to temperature (either heat or cold).  As the pain worsens, patients have difficulty moving the limb, which can lead to stiffness and more pain.  These symptoms can also come and go.

 

The pain started suddenly when I was nine as a slight pain in my knee, which kept getting worse and worse.  I went to an orthopedic surgeon near where I lived and had an MRI.  They found a slight tear in the cartilage and the doctor decided to operate.  It was successful at first. It was a slight arthroscopic surgery, and I thought I would be back on my feet in no time.  But as I went to physical therapy, the pain started getting worse.  I kept pushing myself.  My parents didn’t know what to think. T he doctor implied that I had a low pain tolerance and that I didn’t want to work hard to get better.

 

The pain was getting worse and was affecting my sleep.  I was having trouble walking.  The pain was a burning sensation, like my leg was on fire.  I couldn’t straighten my leg because the pain was so intense.  It finally stayed like that.  The muscles in my ankle had atrophied and couldn’t hold me up.  I was starting the 5th grade, trying to do normal things, but the pain was so great that I couldn’t concentrate. I was going to school only half days because of physical therapy.  I was becoming really depressed.  I was losing hope.  I was in so much pain, I didn’t know what to do about it.  I wasn’t going to school normally, I didn’t have any friends.  It was so horrible at that age to see everyone else run around, and I couldn’t.  I was taking a lot of pain medication.  I was also taking anti-anxiety pills.  Nothing was really helping.

 

And then, I don’t know how to describe it, but It’s like you’re traveling up a hill and you don’t think you are ever going to get to the top and then you finally just reach the peak and things start happening.  By the middle of sixth grade I was out of the wheelchair and back on crutches.  It took a long process to get to that point.  It started by taking a step on the crutches and then I’d sit back in the wheel chair.  Once I was vertical again on the crutches that really helped. I don’t know how I originally damaged my knee. It started out as just an ache and then grew worse and worse.  I was limping.  There had been some torn cartilage, but I probably could have done without surgery.  Today, my right leg is curved and the calf is smaller and sometimes walking long distances is difficult.  I have arthritis in my leg and hips. But I am in college now and am able to live a full and active life.

 

Headaches & Anxiety

 

Danny is a 12-year-old boy who developed headaches that got worse and worse and did not respond to any pain medication.  He was unable to sleep or go to school.  He was hospitalized and, following a normal MRI, Danny underwent multiple tests including several lumbar punctures (LP’s) (needles placed in his back to get cerebral spinal fluid to check for meningitis and to check the pressure of the fluid).  Because the doctors had technical difficulty during the first two LP’s, they performed a third.  The tests all came back normal, but Danny’s pain was no better. Frustrated, the doctors began to wonder if Danny was increasing his pain complaints to “get attention” and decided to refer him to our pain clinic because the referring physicians knew we had psychologists as part of our program.  During Danny’s evaluation, we discovered symptoms of a generalized anxiety disorder and other factors that had initiated the headaches which were then made significantly worse by the medical traumas Danny underwent in the attempt to “make a diagnosis.”  These medical traumas actually led to post-traumatic stress disorder (PTSD), further aggravating Danny’s pain problem.

 

This story illustrates that a detailed medical history at the start could have revealed factors that were causing Danny’s headaches or at least have indicated what was making them worse. Invasive medical tests should not be the first approach since many medical tests have risks. Doctors often forget to ask about risk factors, such as past traumas, or don’t evaluate children for anxiety, learning disabilities, and other problems that affect pain.

 

Irritable Bowel Syndrome (IBS)

 

JoAnn is a 13-year-old girl who, about six months before she came to see me, had developed belly pain associated with some intermittent constipation, diarrhea, bloating, and nausea.  She had had gastroesophageal reflux disease (GERD) early on but this had stopped.  These symptoms continued and worsened until she was having significant abdominal cramping and diarrhea every morning.  Soon she was regularly missing the entire morning at school.  She began to restrict what she ate and developed rigid food preferences because she feared that certain foods would cause her diarrhea.

 

JoAnn also began having trouble falling asleep at night, although once she was asleep, she remained asleep.  She started limiting her social activities because of the diarrhea and because she was not feeling well.  She said that nothing helped and eating made her belly pain worse.  JoAnn originally saw a pediatric gastroenterologist who performed an endoscopy (a procedure where a tube is used to examine and take biopsies of the esophagus, stomach, and small intestine) which was normal.  He recommended that JoAnn see a psychiatrist, explaining that this was a “stress-related condition.”

 

A few months after the belly pains began JoAnn had seen a psychologist for three visits for grief counseling after her grandmother’s sudden death.  Four months later, she was evaluated by a second pediatric gastroenterologist and she was placed on Elavil.  She was referred by that gastroenterologist to the Pediatric Pain Program after the Elavil failed to relieve her pain.

 

JoAnn described her belly pain as “throbbing, stabbing, cramping,” and often associated with sore abdominal muscles.  She rated the pain on a scale of “0-10” (in which “10” is the worst pain possible) as averaging a “6” with a range from “2-8.”  She reported intermittent diarrhea and constipation, and said that the problems related to reflux and bloating were gone but she still had occasional nausea.  She was no longer vomiting.  She had previously been given a number of medications, including Tigan for nausea, Elavil, Bentyl, Immodium, stool softeners, fiber, and Mylanta.

 

Dr. Zeltzer discusses JoAnn.

 

Reviewing JoAnn’s symptoms with her, I learned that she had general fatigue.  She had headaches at least once a week which were helped by Tylenol.  She had occasional trouble breathing, heart palpitations, and tightness in the throat from panic attacks.  She had some dizziness when standing and occasional hot and cold flashes.  The pain attacks occurred about once a week. JoAnn’s mom reported no significant medical history other than as described above.  JoAnn still got A’s and B’s, even though she had been missing every morning of school for about 6 months.  JoAnn’s physical examination was normal except for some slight belly tenderness near the bottom at the right. S he reported having trouble concentrating, feeling lonely, and crying often.  She said that she had been having panic attacks for the last 3-4 months, although she was “used to them” and recognized that they were “stress-related.”  She said that she was most stressed out by homework and by pressure to be at school when she was sick.  She admitted that she was a “worrier.”  As a result of what I learned about JoAnn and my physical exam, I diagnosed her with the following: 1) Irritable bowel syndrome with constipation and diarrhea, abdominal pain and nausea; 2) Myofascial (muscle-spasm) headaches; 3) Major Depressive Disorder, in partial remission; and 4) Recent onset of panic attacks.

 

One thing that made JoAnn anxious was that she might have an attack during school and might not be able to get to the bathroom.  This is a common concern for children with IBS.  I recommended a medication to treat JoAnn’s IBS, a drug that would quiet down her nervous system and help ease the panic and belly pain.  This was an SSRI that has been shown to be effective in children with IBS.  I told JoAnn that she could use Immodium for diarrhea and Miralax for constipation.  We talked at length about cognitive therapies such as hypnosis or biofeedback and physical therapies such as yoga or massage.  Also, I encouraged her to get more exercise and recommended swimming and walking.  We discussed her diet and reviewed what a healthy diet was and I recommended that she try to eat fewer greasy and fatty foods.  Finally I referred her to a psychologist who was skilled in cognitive-behavioral therapy (CBT) so that JoAnn could learn some skills to reduce her central nervous system sensitivity, calm her body and her mind, and reduce her feelings of panic and her pain.   I asked her to come back in a month to see how this plan was working.  When I saw JoAnn again, she was doing much better and, after six months of treatment, she was taking only the SSRI, no longer had belly pain or panic attacks, was attending school fulltime, was active again with her friends, and was finding it much easier to concentrate on her schoolwork.

Designed by

PARTH R BHATT

 
 
  • Ann

    Ann     age 20, female

     

    I was diagnosed with RSD/CRPS when I was 12 after fracturing my ankle. I saw 18 different specialists, all of which tried different techniques that only provided temporary solutions, if any at all. I had nerve blocks, high dosages of drugs and several tests that made me feel more like a lab rat than a teenage girl. I had to use an electric scooter or wheelchair to get around, because it was too painful to walk. Doctors said I was imagining the pain, and even those who believed me didn’t know how to help.

     

    When my parents and I first met Dr. Zeltzer, we were so encouraged that she wanted to help and more importantly, that she knew how to. Over my time with the UCLA team, I saw several members of the team for different therapies and learned different techniques from all of them on how to realistically deal with RSD. Their combined treatment programme helped me manage the pain and get my leg strong enough to walk again, but the best thing that Dr. Zeltzer and her team gave me were the tools to be able to deal with my RSD without constantly seeing doctors to help with the pain.

     

    I still do my physical therapy and hypnotherapy regularly, but my pain is very manageable now. I now live in London, where I teach and study Shakespeare. I have a very full life and RSD only plays a minor role in it, mostly thanks to the UCLA team and the techniques they taught me.

  • STACY

    Stacy     age 25, female

     

    Before I came here I was at the end of my rope and at a loss for what to do and how to get better. I had tried everything you can think of… mud, herbs, acupuncture, magnets. They gave me side effects and parasites and bacterial infections. Every doctor said, “I can’t help you.” It was devastating.

     

    I went to my friend’s gastroendocrinologist who could help me, but recommended I come here. I hooked up with Dr. Z and went from having no life to an amazing life that I love. I was sleeping all day and night and couldn’t function. I was too exhausted to have a conversation. I didn’t go to college and lost six years of my life.

     

    With the tools, medicines, and exercises, and trial and error, I have come full circle. I am now holding down three different jobs. They worked with me and were very understanding. When I had feelings that I didn’t like something we were doing, Dr. Zeltzer listened. She was open to working with me to find the whole package to make me whole. My bad days are nothing compared to my bad days before, which used to keep me in bed in the dark lying there in agony. The combination of medicines and learning to relax the muscles is what’s made the difference. The other doctors have a plan you have to fit into. They say you need a psychiatrist because you don’t fit into their plan.  Dr. Zeltzer’s plan is an evolving plan which you change to fit your needs.

  • SAM

    Sam     age 20, male

     

    At other clinics they are more toward using medications. Here there are also alternate treatments like physical therapy. I was at another clinic and they wanted to do Botox. Here there was a long list of treatments that are not drugs and are more natural. The alternative treatments have helped more than the drugs with working with the pain and working through the pain instead of sitting and waiting for the medication to make it go away.

  • TAYLOR

    Taylor     age 17, female

     

    I didn’t know if the clinic was going to help me because I knew pain therapy was with the mind and body, but I didn’t know how they went together. When we got in there and Dr. Zeltzer asked me the questions, I kind of had heard some of the information before, but I understood more about it so it helped me understand what was going on with me and that I wasn’t going crazy.

     

    Hearing that other people had the same thing made me feel not so alone. I don’t have to deal with it by myself anymore. I know that other people know how I feel.

  • MATTHEW

    Matthew     age 13, male

     

    The pain clinic was good because I went to a whole bunch of other doctors, but the pain clinic got it right on the first try. The team approach introduced me to other doctors and therapists... some were great and some didn’t work out, which was okay. They’re awesome here... they’re really nice. Here they knew exactly what it was and it’s already better. It is comforting to know they’ve seen it before and they are confident they can treat it. They always respond right away if I have a problem, even if it’s on a Saturday.

  • ANDREA

    Andrea     age 15, female

     

    It’s a lot different than other doctors because they put it on a personal level and see what’s wrong and figure out ways to fix it. They have a goal to make it happen. Other doctors would test for something, and if the test came back negative, they would just send me to another doctor. I started with an orthopedic doctor who couldn’t figure out what was causing the pain and then I went to a neurologist who couldn’t figure out where my pain came from. The other doctors’ goal was to stay in their plan. Here the goal is to get to my personal plan and health – not theirs.

  • MORGAN

    Morgan     age 17, female

     

    Everyone was very nice and friendly. For one and a half years, I went to one doctor after another who didn’t know what to do and just kept sending me to another doctor. Here I learned a lot that I had no idea was wrong with me. I can’t wait to come back and try my new medicines and everything. Instead of a million tests, the exam was different and there were different options to do, other than just medicine or taking another test.

  • MARISSA

    Marissa     age 16, female

     

    They actually did something. They told me my pain was real and not just psychological. The other doctors told me what I didn’t have and how they couldn’t help me. Here it was about me and what they thought was going on with me.