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.
2012-2016 Please contact PARC.
SPRING 2011: March 2011
TO ORDER PARC NEWSLETTER
To read newer back issues please contact PARC.
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
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
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
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 2016, 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
- Then lower your hands. You should feel more focused and aware
of your body.
- Keep breathing deeply through your nose—about 8-10 breaths
- 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
- 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
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
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
“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
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
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
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
O’Donnell-Jasmin, Louise Ed. Working Together
When Facing Chronic Pain Odon Productions 2010 ISBN 978-0-9810478-1-2
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
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
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
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.