The following articles are taken from the PARC PEARL published by the PARC organization. Our publication addresses the latest issues surrounding CRPS e.g. research, drugs, treatments, conferences and current developments. Most of all, we feature personal stories of those suffering with CRPS and positive ways to cope. The PARC PEARL is suitable for patients and professionals or anyone with a keen interest in CRPS.
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SPRING 2011: March 2011
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When I was young, everything was at my fingertips. I was a sister, a daughter, a friend. An accomplished athlete, I was seconds away from qualifying for the Canadian National Track and Field Team. I was at the top of class; I was an accomplished pianist for 12 years.
Then, RSD came into my life.
After surgeries on my feet for athletic injuries, I awoke to a wheelchair, two casts on my legs, and pain that was only getting worse.
The casts came off, no relief.
I couldn't walk; my legs were purple and cold as ice. My arms were beginning to change as well. The right side of my face was numb. Then, it started with my eyebrows, the hair fell out. My eyelashes were next, followed by all the hair on my head. It will never grow back.
I was 15.
I'm terrified, I thought. I'm alone. I'm alone and no one can understand what this feels like; my body is disintegrating from the inside out and no one can see that anything is wrong.
But I was wrong.
I was not alone; there were others like me, and doctors who understood that it wasn't a matter of me seeking attention, the need to have more friends, or something that could be cured with psychological counselling. It is something everyone must be diligent with and accept in your own time, because there is life after RSD, a beautiful life with a future. My name is Sarah, and here is how I broke through that dark place to become happy and live a successful, productive, and optimistic life.
1) You are never alone.
For those with the disease, one cannot help but feel a sense of alienation from family, friends, peers. While it is impossible for them to understand your burden, they are there to help you. Confide in them; it will make you stronger. When you feel you're alone, reach out to someone who knows - PARC, a clinic, your community, anyone. In the world at this very moment, there are thousands who feel exactly what you do, who can understand and help you with tips and tricks to get you through the dark times. For me, this was my family, and this was my doctors. I was fortunate enough to be sent to Dr. Hooshmand's Neurological Clinic in Vero Beach, Florida, and the Seattle Children's Hospital RSD Unit. With their help, I got my confidence back. I became strong and able to fight back.
2) RSD does not define you.
You can have a fulfilling life with RSD. You must remember that it is something challenging you; it does not control you or your mind. Keep your mind clear of the negative, stay focused on the tasks you must do to break through that wall of pain, and be diligent. You have the power to control it. Pace yourself, take it minute by minute, task by task, one day at a time. You have the power to do anything you want; never say the words, "I can't". There is always another way to get the job done. RSD changes your life, it does not take your life. The power to live it successfully and peacefully starts with you.
3) You are a new person.
With this disease comes new routines, new challenges. Your life has undoubtedly changed. With RSD, you truly become a new person. Let this person be positive, and accepting of limitations as well as strengths. You have life, choose to live it with wholehearted enthusiasm. When I was able to get out of my wheelchair after two years, I walked slowly, assisted with canes. My therapist took my cane and nailed it to her office wall. Without it, I was forced to stand up straight. Sure, I fell down. Of course it hurt, it was indescribable. But the only thing in my mind was a visual of me walking, unassisted, down that hallway. It likely took me an hour, maybe all afternoon, but I did it. I was 18. Once you change your outlook from a negative place of limitation to that of possibilities, your body becomes a tool to get you there. You will only have success. What I've learned is to never compare yourself to the way you were before RSD. It changes you. I accept I will never compete again, but that will not stop me from living my new life to the fullest, enjoying a walk outside, or appreciating what I have.
I am now 24 years old. I have finished a Bachelor's degree, and am working full time. I am able to live on my own again, unassisted. Sure, I have bad days. We all do. But the most important thing I've learned is to not worry about the little things, and not worry about what could happen in the future. One step at a time, that's all I need.
While the clinics I attended helped me back on my feet, (literally), I still have RSD and it is still part of my daily routine. Don't get down on yourself because it won't go away. Enjoy what you can do, enjoy your family, your community. Sit outside and look at the beauty surrounding you. Your life is a beautiful gift, make the most of it. Focus on your abilities instead of weaknesses and you will find the key to living life with RSD: this thing does not own you, it does not control you, it does not define you. Only you have the power to choose what your life will be.
by Sarah Ruggins
PARC NOTE: Sarah has just been accepted to Graduate School for 2012. In 2018, having finishd her PhD, Sarah continues to do well.
- Pacing Yourself
- Self-Management Program for CRPS
- Potent Pain Preventers
- Acute vs. Chronic Pain
- TALKING TO YOUR DOCTOR
- Book Review: Dissolving Pain
- Dear RSD Friends
"Meditation is one of the best ways to rise above pain and forge a positive attitude.
It increases your mental energy, so your brain can launch an effective counterattack against pain.
It allows you to slip into a state of absolute calm, called the sacred space, that triggers regeneration and healing of your mind, body and spirit.”
Dr. Dharma Singh Khalsa
Find a quiet comfortable spot where you will not be disturbed.
- Close your eyes, take some deep breaths. If any thoughts intrude, let them drift away and refocus attention on breathing.
- To help focus the physical energy of the brain, press the tip of your left thumb on your forehead between your eyebrows. This is the highest thought process area of the brain.
- Then with your thumb, still pressing on your forehead, make a fist, but leave your little finger extended.
- Grasp your extended little finger in the palm of your right hand, and extend the little finger of your right hand.
- Hold this position for three minutes as you continue to breathe deeply.
- Then lower your hands. You should feel more focused and aware of your body.
- Keep breathing deeply through your nose—about 8-10 breaths per minute.
- As you do, focus on an area in your body that hurts. Notice how the pain waxes and wanes.
- Then focus on an area of the body that does not hurt. Pay attention to the comfort you feel there and realize that this sensation is just as real as the pain. Don’t become attached to the comfort or repulsed by the pain.
- Just accept these sensations as they are. Allow peace of mind and spirit to grow with each breath Feel tension, pain and worry wash away.
- Do this meditation for 10-15 minutes twice a day.
TALKING TO YOUR DOCTOR
“Doctors aren’t mind readers.
We have to be told when you are in pain, what your pain is like, and what affects it.
And the only person who an accurately do that is you.”
Paul Blake MD
BEFORE THE VISIT: CHART A COURSE
Before you visit the doctor take the time to map out your strategy. What do you expect to get out of the appointment? For example, make a list of symptoms. Hand your list to the doctor when he walks into the room. This will help the doctor focus and quickly address your concerns.
TAKE YOUR BEST SHOT
A patient gets about 18 seconds to explain a medical problem before the doctor interrupts with questions. What would you like to say to the doctor in two or three sentences? Make sure you state your request as what you expect the doctor to do for you. For example, “ I would like some advice about coping better with flare-ups without using drugs.”
Anticipate the five questions that your doctor is most likely to ask about your pain.
Where do you feel the pain and what does it feel like?
When did you first notice the pain you are having now?
Is there anything that makes the pain better or worse? If so, what?
Does the pain come and go or is it persistent?
Does it hurt more in the morning than the evening?
Record your answers before going to the visit.
DURING THE VISIT: BE BRIEF
Stick to the facts when you are describing pain. If you stick to the script, the doctor can quickly begin to think about a diagnosis.
HEY DOC, FEEL IT TOO
Just saying it hurts isn’t going to help your doctor understand your pain. Be specific and let him know how the pain is disrupting your life. If your pain is preventing you from playing tennis, walking, gardening or doing household chores, let it be known. Communicating how it affects you will help the doctor understand and do something about it.
USE THE LINGO
The more accurately you can describe your pain, the better the chances that your doctor can help you find relief. For example, Use words like stinging, burning, shooting, stabbing, aching, cramping, throbbing or jabbing. Be specific about the type of pain and where the pain is and travels. For example, a sharp stabbing pain in your legs and back that goes all the way to your toes, will need different treatment than a burning pain that begins in your hip and travels down your thigh.
PICK A TARGET
If you have more than one pain, zero in on the most bothersome one first. Telling him that your hurt everywhere will not be helpful. For example, this pain is unique because it is a jabbing in my lower back. It does not respond to pain meds the way my other pain does.
If you do not understand an explanation, do not hesitate to say “ I still don’t quite get it. Can you explain it again?” Your doctor is there to educate you and treat you.
If your doctor does not seem to understand your problem, ask him to repeat what he thinks your problem is. If it does not match what you said, try restating the problem. “Can I explain it to you better or differently?” That way he won’t feel as if you are attacking him.
Ask your doctor to use pictures of visual aids that will make it easier to understand.
GET IT IN WRITING
Ask your doctor for flyers, step by step instructions or handouts that can help you understand your condition, and help you recall techniques for relieving pain.
BEFORE YOU LEAVE:
Take a few minutes to sit in the waiting room and go over the written materials or jot notes about the visit. If you don’t understand something, particularly the diagnosis, procedures, treatment or follow-up visit ask the nurse for clarification. If you are still confused, ask to speak briefly to the doctor.
CONNECT WITH THE DOCTOR
Ask the nurse when the best time would be to phone the doctor if you have a question or need advice between visits. If you leave a message, be sure to tell when you’re available. Some doctors will also have e-mail to respond to you.
If you are still uncomfortable about your diagnosis or treatment plan,
“there is nothing wrong with getting a second opinion for a complicated problem like pain. You are not necessarily going to hear the same thing from a second doctor. Most doctors do not get upset when you ask for another opinion.”
Source: Dollemore D and Eds. Prevention Health books for Seniors Seniors Guide to Pain Free Living
FALL ISSUE 2010
WORKING TOGETHER WHEN FACING CHRONIC PAIN
“With this book I invite you to discover the formidable strength of the human spirit in the fight against chronic pain. The marvelous collaboration of all these people has served to make this book the most important work on chronic pain published to date, conceived by an individual suffering from chronic pain for an audience made up of people suffering from chronic pain and their loved ones, and written by health care professionals working in a variety of sectors as well as by the people living with pain on a daily basis.”
writes Louise O’Donnell-Jasmin, author, pain patient and editor.
This 388 page book is divided into six sections:
- Understanding chronic pain
- Psychological and social aspects of chronic pain
- Treatment and pain management
- Patient associations in Canada, US
- Professional associations for pain specialists
- Pain clinics and rehabilitation centers
Pain is a complex process in the body and therefore treatments can be complicated as well. The section “Understanding chronic pain” covers pain assessment, fibromyalgia, CRPS, headaches, back pain, or facial pain, sleep and pain, pain in children and the elderly.
Next is the psychological and social aspects of pain which includes perceptions of pain, pain and emotions, working with chronic pain sufferers, surviving a loved one’s chronic pain, mood disorders and chronic pain.
The very heart of the book is the section on treatment options and pain management. This section consists of the many therapies used to treat pain. Some of the topics include: pain prevention, the patient's role, sleep and chronic pain, breathing, relaxation and visualization, hypnosis, exercise, medications, role of the pharmacist, role of the nurse, invasive therapies, physical rehabilitation, occupational therapy, physiotherapy, acupuncture, and pain tools.
The next section is patient associations for pain and professionals. Lastly are the pain clinics and rehabilitation centers.
After each chapter patient testimonials are offered. These deeply personal stories highlight patients’ struggles with pain and their fight to overcome adversity. These stories are a wonderful tribute to the human spirit, to its tenacity, strength and courage.
Certainly the book is a practical guide to dealing with pain. Anyone with chronic pain or CRPS can pick up the book, find an explanation of their particular illness, explore various treatments and find hope in the countless inspiring stories of patients. These successful pain patients lead support groups, serve as directors on Boards, are certified to lead pain management courses for patients, and some have started their own associations. They know what it is like to suffer with pain and have made it their life’s calling to help others by paving the way for those who are still struggling.
PROFESSIONALS AND PATIENTS
The authors are pain experts in their field; doctors, psychologists, therapists and psychiatrists. These are some of the busiest professionals with already packed schedules, who took the time to write about their discipline and share their experience and considerable expertise on pain management. Moreover, the experts are all Canadian pain professionals.
These specialists provide the information and know how but the patients provide the reader with most important ingredient : hope.
O’Donnell-Jasmin, Louise Ed. Working Together When Facing Chronic Pain Odon Productions 2010 ISBN 978-0-9810478-1-2 www.productionsodon.com
To see the book cover go to:BOOKS
WALK/RUN 4 RSD SEPT 11, 2010
We were in pain afterwards, but the Walk/Run for RSD/CRPS was well worth it. It brought some of us with RSD together, while raising awareness and funds for research. The event was the brainchild of RSD/CRPS patient Donna Braun and her brother Mike. In an interview, Donna says, “For the longest time I was wondering what I could do besides just moaning about this disease.” It was during a phone conversation with Mike that the idea was born. That was in April.
They would hold a run for RSD with the proceeds going to PARC for CRPS research. Executive Director Helen Small thought it was a great idea and was excited about participating. She issued a challenge via the Summer newsletter and the PARC website for all “able-bodied” individuals to come out and walk or run. To help prepare, she began training in May.
For Donna and her family, it was all about organizing the event. Over the next few months, with help from Mike, his wife, Donna and her husband Dale and their children “just kind of stumbled through it.” The first thing they had to do was find the right location.
A part of the Greater Niagara Circle Route near the Welland Canal Museum at Lock 3 in St. Catharines was chosen as Mike and Dale jog in that area “so it just seemed to be the perfect spot.” Once they’d settled on the location, it had to be booked. And although Donna admits the anniversary of 9-11 wasn’t the ideal time, the dates before and after it were booked for learned for next year, she adds.
With help from various websites, they plugged on. Event insurance was needed, as was a license for the picnic area where we met up. Then she had to write letters to police—even though her husband is a sergeant on the Niagara Regional Police force— firefighters and paramedics to advise them of the run/walk. Her son Jake designed and paid for a website that helped reach a wider audience (www.run4rsd.com). Donna and Mike had the task of finding door prizes. Since Mike works with Performance Cars, he was able to get a number of items there and Donna asked at all the places she shops. She says the local merchants she approached were only too happy to contribute.
As the day drew ever closer, she admits there were “a few moments of panic: is it going to turn out?” She was also “really worried” about the weather. To avoid confusion, they had not set a rain date.
On the Monday prior to the Saturday event, I decided I would walk the 5 km along with Helen. I had planned on attending as a PARC Board member, but wasn’t sure I wanted to compete. But once I made up my mind, I started taking extra long walks with my beagle Carly, “The Beast” each night. If I was going to do it, Carly was going to as well.
Donna also took a while to decide whether she’d walk. After a rough summer due to the large number of rain days, she wasn’t sure she’d be up to it. In the end, she decided to go for it. But she still worried the weather could affect her participation.
All of Donna’s worries about the weather evaporated morning of the event. “We could not have been more fortunate with the weather,” she says. The sun was shining and the temperature was just right. About 50 of us gathered at around 11 a.m. in the picnic area beside the Welland Canal Museum.
Donna’s friends and family were out in support, as were other RSD patients from different areas of the province: London, Peterborough, Ajax. One lady even took a bus in from Toronto and took a cab to the event location
Rich Merlino, a Niagara Falls resident who owns the only Elliptigo—a contraption that looks like an elliptical machine on a bicycle—came out to show it off. He also allowed a couple people to try it out.
The runners were the first ones off the mark. Those of us walking the 5 km.—which included Helen, “The Beast” and I—were next, followed by the walkers doing the 2 km. The course led us took us along the west side of the scenic Welland Canal, under the Garden City Skyway, toward Lock 2.
Donna completed just over 2 km. She says she hasn’t walked like that since her teens. “I’m sure I’ve done that much in zoos, but not all at once.” I have completed a couple 5 km. walks in the past, but aside from walking “The Beast” most days, it’s been about two years since I’ve walked that far. The first 2.5 km. went by quickly. It helped that “The Beast” was pulling, forcing Helen and I to keep up to her.
But on the way back, she started wandering off track into the brambles and needing to stop for more water After crossing the finish line, we all did a little walking around just to allow our legs to wind down
were a lot of good moments.
” It’s always nice to meet up with other people with RSD, she says, because they know exactly what you’re talking about. Most of the time—as many of us discovered while trying to rustle up pledges—you find yourself having to explain to people just what RSD is and how it affects you.
And although we paid for the run with high pain levels over the next couple days, it took a lot out of Donna. “It’s been a rough go,” she says almost three weeks afterwards. “I’m still trying to recuperate.”
Despite this, Donna says there will definitely be another walk/run next year, around the same time of year.
The family is already talking about different ways to improve it next year. We’re going to be a little more organized next year, she says, so we’re not running around at the last minute dealing with things.“Hopefully every year it’ll get better and better.” She would like to see it grow each year until it gets to the point where it’s like the cancer runs or the Terry Fox runs, she says, adding she wants to reach that day when she’ll no longer have to explain what RSD/CRPS is.
“The hope is we can raise enough money and awareness so when you say, ‘I have RSD,’ they’ll know what you’re talking about.” To date, the event has raised about $5,600 with “some money (still) trickling in.”
With more time to prepare for next year and hopes of finding cheaper rates for the event insurance and T-shirts, she hopes to raise even next time around.
“We definitely have to find a cure for this,” she says emphatically.