CRPS SURVIVORS' STORIES
We present stories of patients with CRPS.
Despite CRPS they live their lives.
CRPS does not define them.
They are inspiring stories of struggle,
pain, frustration but
most of all, success.
To read the story, please click on the name.
Roxanne Clement 2018
Thai Massage by Joanne McFadden 2018
Missing Female: Ada Meecham 2018
Tips for Travelling by Fern Kwantes 2018
Craniosacial for CRPS by Joanne McFadden 2018
Introduction:More Stories Part 2
More stories will be added as they are contributed. Please bookmark this page.
TO ALL CRPS PATIENTS:
"I am NOT CRPS and it will never define me.
Stay strong and keep fighting.
Just know that I will be cheering you on."
Living with Complex Regional Pain Syndrome
My name is Roxanne Clement and this is my story about how I’ve been living with complex regional pain syndrome (CRPS) for the past two and a half years. Although I’m not cured, I’ve learned to manage my symptoms and I’m able to enjoy my new life. My journey includes the good, the bad and the ugly and I was able to get through it all thanks to the support of my wonderful husband, children, family, friends, colleagues and excellent medical team. I hope my story gives you the courage and strength to continue your fight with CRPS and to never give up hope.
"Remission is possible, and nothing feels better than taking back the POWER!"
I grew up in the small community of Limoges, Ontario. As a child, I’ve always been very athletic. I loved figure skating and I was competing at the age of 9. I then joined a hockey team and I played until I was 19. I was also part of many sports teams in high school. Later in life, I started to enjoy weight lifting. I’ve always led an active life, enjoyed eating healthy foods, and I shared these passions with my husband who is a personal trainer. I’ve never suffered any illnesses and always thought this was partially due to my healthy lifestyle. When we had our children, we raised them with the same vision: eating well, staying active, and being happy.
In September 2015, everything changed while playing ball hockey during a charity event at work. I injured my left knee during the game.
"I heard something pop behind my knee,
I immediately fell to the ground
and couldn’t get back up."
As I sat and watched the game, I remember thinking that I would simply have to rest, elevate and ice my leg for the next few days. Since I couldn’t put any weight on my leg, I used crutches to move around. I did my best to continue helping with the house work and taking care of my children. I was also able to work from home.
"Over the next few weeks, the pain in my leg got worse and
I started noticing temperature and color changes
from my knee down to my foot.
Then, there was a burning and tingling sensation
and my leg became very sensitive to the touch.
My knee was locked at 70 degrees flexion
and I felt a stabbing pain
every time I tried to move it."
I had severe muscle atrophy and involuntary muscle spasms. My leg eventually became very shiny and the hair was growing more rapidly. I also started to suffer from sleep apnea. Eventually, I could no longer manage to juggle my work, house chores, or take care of my kids. I was confined to my bed or chair and used crutches to move from time to time. I felt horrible every single day because I couldn’t be there for my family anymore. Luckily my mom was able to help us out during this difficult time. An MRI was finally done to determine the damage to my knee. It confirmed that I had partially torn the anterior cruciate ligament (ACL) in my left knee. I was so excited when I first got the news because I thought all I needed was reconstructive knee surgery.
I still remember that day when I showed up with my father to meet with the orthopedic surgeon. He took one look at my leg and told me that I had CRPS. By then, I was presenting all four Budapest criteria: increased sensitivity, discoloration and temperature changes, swelling and extreme sweating, muscular spams and zero range of motion. I had never heard of CRPS or reflex sympathetic dystrophy (RSD) and I thought that it would go away on its own. They handed me a pamphlet for P.A.R.C (Promoting Awareness on RSD and CRPS) so I could learn more about it. I realize today how lucky I was that the surgeon was able to diagnose me at the early stages of the illness. I will always be grateful. However, at the time, I still wanted reconstructive surgery.
The initial treatment plan
The surgeon suggested an aggressive treatment plan to treat CRPS. I was prescribed pregabalin for the nerve pain, anti-inflammatory medication (NSAID) and tramadol to help manage the pain. He also urged me to start physiotherapy five times a week and aqua therapy. The inner athlete in me kicked in and I was determined to get betteronly for myself, but also for my family. My daily physiotherapy treatments included massage, ultrasound, stationary bike (two minutes at first and then slowly increased to 30 minutes), electromuscular stimulation (EMS/muscle stim), stretching exercises, cupping therapy and ice packs for the swelling on my knee. I also joined the local fitness center where I swam for a few minutes most evenings. I was able to move my leg and walk without crutches after only two weeks of this intense treatment. My knee was still locked but I could finally walk! It was so amazing and I had so much hope that I would be better in no time. I also decided to follow an anti-inflammatory diet which involved eliminating all sugar, processed foods, dairy and gluten. I also added daily supplements (multi-vitamins, vitamin C for inflammation, magnesium to relax the muscles, Coenzyme Q-10 to help with nerve damage and Omega 3-6-9 to reduce the pain). I wanted to do everything I could to heal as fast as possible!
My first set-back
This happy moment in my journey came and went when I re-injured my knee one month after the initial diagnosis. CRPS flared-up with a vengeance and it felt like electricity was travelling throughout my entire body. The pain was worse than the initial flare-up and I had a tingling sensation in all four limbs. The discoloration in my left leg became worse (blue color) and the veins in my foot were more pronounced. To make matters worse, during that time, I had managed to bump my baby toe on my right foot and sadly, CRPS travelled to my right foot. That’s when I went into a complete panic mode and the symptoms kept worsening by the seconds. I didn’t know back then that I was in a constant fight-or-flight response and that I needed to tap into the parasympathetic nervous symptom (PNS) to help reduce the symptoms. I also didn’t know that CRPS was related to a malfunction of the central nervous system. All I knew was that I needed to reach-out to someone that might be able to help. That’s when I called the P.A.R.C Help Line and spoke with Helen Small. She explained to me that I was having a pain flare-up and that it would eventually come back down. Helen took the time to explain CRPS and we discussed different treatment options that were known to be successful for early diagnosis. That’s when I first heard about nerve block injections. I returned to physiotherapy the following day determined to ride this pain wave. I knew that it would get worse if I didn’t move and it was comforting to be surrounded by health professionals during this time. The pain flare-up was eventually reduced after several days.
Nerve block injections
I had my first nerve block injection at the Chronic Pain Medical Clinic in Ottawa in February 2016. At that point, I had been living with CRPS for five months. Since my knee was locked, this treatment required a local epidural to my leg. Bretylium (nerve block) would be injected on the top of my left foot and it would travel in the lower part of my leg for thirty minutes. A band would be tightly wrapped above my knee to make sure that the nerve block would be confined to that area. Afterwards, the anesthesiologist would try to unlock my knee with some manipulation. I was able to fully extend and bend my knee after the second treatment. I had six successful nerve blocks and they took place every two weeks for three months. The anesthesiologist also added a daily dose of cortisone (capsules) that I took for a short amount of time. The daily dose was reduced every week for a period of eight weeks. I had physiotherapy every day during those three months except on days that I had nerve block injections. With every nerve block, I was able to work harder during my physiotherapy treatments and we were able to add weight training to strengthen my leg (squats and lunges) and balance exercises using a wobble board. I could even swim laps up to thirty minutes. My daily routine usually involved physiotherapy during the day and swimming in the evening after my kids went to bed.
"I remember many evenings where
I would start to cry
because I didn’t want to go swimming
and my husband would be there to encourage me."
I would head out to the pool with my head down but I would always come back with a smile on my face knowing that I had done everything I could to make it better for the next day.
One month after I started the nerve block injection treatments, I was transferred to the Altum Health Physiotherapy Clinic. This clinic was equipped with specialized desensitization techniques to help treat CRPS. These techniques included graded motor imagery, mirror imagery, desensitizing my leg and foot using different materials on a stick (from cotton ball to sand paper) and putting my foot in buckets with different materials (pebbles, beads, sand). The tricks with those desensitization techniques were to go very slow. I quickly learned that I could aggravate the sensitivity if I plowed my foot in a bucket full of materials (for example, pebbles). We also tried to desensitize my leg to cold water using contrast hot/cold therapy. After several weeks using the contrast hot/cold therapy, I noticed that I could endure a water temperature of 75 degree Celsius. This was a huge milestone for me. It meant that I could start swimming in the pool or lake in the summer, something I taught I wouldn’t be able to do anymore!
A typical day at this physiotherapy clinic involved 30 to 45 minutes of stationary bike, strengthening exercises using rubber bands (clams, glute bridges, standing kickbacks), squats, calve raises and balance exercises (wobble board and standing on one leg with eyes closed). I would usually complete the desensitization techniques at the end of the workout routine.
Since I spent a lot of time at the physiotherapy clinic, I met other people suffering with CRPS. Although I wouldn’t wish this disease upon anyone, I enjoyed sharing stories, experiences, struggles and successes with other patients. We all shared the same goal: Remission.
Part 2: Psychotherapy
I met with a psychologist weekly for about a year and I was finally able to be candid with someone. I would always put a smile on my face for my kids but I didn’t have to do that during those therapy sessions. My true feelings would come out. I was mad at the world and I didn’t want to be pitied. I was having a very tough time accepting my limitations due to the ACL knee injury, living with pain every day and having a discolored limb. In the end, she helped me accept my new life and she thought me how to set realistic goals for myself. She taught me the importance of daily breathing exercises and I eventually realized that talking about my illness was very healing.
In late summer of 2016, while spending time at my parents’ cottage, I fell down the stairs and landed on my injured leg. I felt the vibration from the heel of my foot all the way up to my upper leg. I braced myself for another pain flare-up. I knew what to expect this time and I didn’t waste any time! I increased my pain medication (prebagalin) and met with my anesthesiologist. I had a nerve block injection with bretylium the following week and a second treatment was done two weeks later. I was back doing physiotherapy within a few days. I was extremely discouraged, frustrated and upset that I had become so fragile. I didn’t want to live in fear but it was hard to accept yet another set-back. Although in hindsight, I was recovering faster every time. I was also working part-time during that time and I was having a very difficult time adjusting to all the demands of work and life balance, rehabilitation and illness. I didn’t know how to fit everything in. I wanted to find a treatment that could help CRPS or the ACL injury. I knew that it wasn’t possible to surgically repair the ACL because of the unpredictability of CRPS but I was willing to try anything that might help me. . That’s when I decided to look into naturopathic medicine.
I showed up at the Ottawa Integrative Health Centre (OIHC) in November 2016 with a defeated look on my face. The high dose of pain medication was affecting my digestive system. Although my CRPS symptoms were greatly reduced (less sensitivity, no excessive sweating, normal hair growth, full mobility, low pain levels),
"I was exhausted all the time.
My knee would often buckle sideways which was extremely painful
and I had a hard time concentrating
which was extremely problematic, especially at work".
They first suggested I try an Autoimmune Paleo Protocol (AIP) diet to help regulate my immune system and reduce the inflammation. I followed the Wahls Protocol diet by Dr. Terry Wahls (one of many AIP diets) and I immediately felt better. Second, they suggested additional supplements (minerals to boost my immune system, turmeric to reduce the inflammation and collagen to help with the tissue repair in my knee). Lastly, they suggested laser therapy to help with the healing process for CRPS and the ACL and to reduce pain.
I started Bioflex Laser Therapy treatments at the OIHC once a week for several months and I noticed the blood circulation in my leg had improved, the discoloration was less pronounced and I was pain free many times during the day. I was able to reduce my pain medication after fifteen treatments. AND, my knee was finally more stable. It no longer buckled sideways. These were incredible results. I had finally found what worked for me!
My life today
Although I’m not cured, I’ve learned to manage my symptoms and I am able to deal with pain flare-ups when they arise. To do so, I follow the AIP diet, I take daily supplements (multi-vitamins, minerals, vitamin-C, magnesium, Omega-3-6-9, turmeric, collagen powder and probiotics) and I exercise daily (cardio and/or weight training). Yoga, stretching and gentle massages are also part of my “staying healthy routine”. I do weekly or monthly cold laser therapy treatments to help reduce CRPS symptoms or to help repair the ACL injury. And occasionally I do take pain medication to help control severe pain flare-ups.
I wear a brace while I exercise or play with my kids to make sure that I don’t re-injure the ACL. It’s my war wound and a daily reminder of how lucky I am to be able to walk and enjoy life again.
"I feel stronger every day
and I’m no longer afraid for my future.
I don’t dwell on what
I can no longer do but rather,
I focus on the things that I can do."
I also have amazing support at home and everywhere I go which gives me the strength to continue to fight every day. There isn’t a miracle treatment out there. If fact, it seems that taking a multidisciplinary treatment approach provides better results. What worked for me may not work for you.
The biggest lesson that I’ve learned throughout this journey is that it’s important to listen to your body. I thought pushing harder would get me there faster but I quickly learned that it was the opposite.
Start with small goals and work your way there slowly. Once you’ve reached it, set another achievable goal, and another one until you finally see that it is possible to get better.
During flare-ups, I try to stay as calm as possible to avoid the fight-or-flight responses. Yoga, stretching, deep breathing exercises, gentle massages, cold laser therapy, biking or walking usually helps me during those times.
I also enjoy listening to the song “Stronger” from Kelly Clarkson. I see myself fighting off CRPS during that song. I need to keep going when I’m having a difficult day
I’ve been on this road to recovery for a long time but I know that there is a light at the end of the tunnel. I hope that my story will give you hope and courage to continue to fight to get your life back.
"I’m a mother, a wife, a daughter, a sister, a friend and a colleague.
I AM NOT CRPS and it will never define me.
Stay strong and keep fighting. Just know that I will be cheering you on."
© Roxanne Clement 2018
Editor: Roxanne has CRPS and lives in Ottawa.
My journey to health with Thai Massage.
Most CRPS patients cringe at the thought of being touched, whether it’s from clothing, people or bumping objects - sometimes even a breeze can be too much to tolerate. The guarding we do to protect ourselves can shield us from anticipated pain, but it can also cause additional pain in the corresponding limb.
Thai Massage – What is it?
Thai Massage is essentially a combination of assisted yoga and physical massage. Theoretically, Thai massage is based on invisible lines in the bodies called “sens”, which are similar to concepts of meridians in Acupuncture and traditional Chinese medicine. Working on these points and lines can release pain and increase circulation.
As a patient, you wear loose, comfortable clothing and lay on a soft mat on the floor with a pillow under your head. Once you’re feeling comfortable, your practitioner assists you with yoga poses, stretching and works on the sens and pressure points on the body.Having experienced Thai Massage before my CRPS diagnosis, I was interested to see how my body would respond to this treatment post diagnosis.
“I found that after each session of Thai massage
my body felt freer and less swollen.
The ‘stagnation’ I felt from the swelling, guarding and
not moving parts of my body,
was greatly reduced.
I felt that my body flowed more and felt softer”.
Part of my path with CRPS has involved practicing mindfulness, meditation, therapy and natural treatments. While I was working on my mental health, I decided I would like to find something that would support my physical health at the same time. I have always enjoyed yoga, however due to post-concussion syndrome, and now CRPS, many yoga positions would cause complications.
My research led me to connect with a Thai Yoga Massage teacher in Vancouver, named Gordon Waselnuk, who offered both one-on-one and group classes. With unpredictable pain days, and my hesitation with having someone touch my affected limb, I decided that one-on-one classes would be the best option.Gordon has been a Thai massage teacher in Vancouver for over 12 years. He meditates, travels to South East Asia each year and attends retreats as well as offering Thai Massage to clients. You would never guess he is turning 68 this year, and on top of his amazing good health and youthful energy he is an incredibly inspiring human.
My journey with
I started classes with Gordon and immediately had to overcome my dislike for human feet. Puppy feet and kitten feet are overwhelmingly cute and sweet but human feet are not a body part that I enjoy touching.Much to my surprise, I found when I was put in the role of ‘therapist’, I began to view the body and all of its parts as an amazing system that I would be able to help, and it became more of a journey of health instead of just body parts.
“Gordon would show me a sequence of moves,
often involving using his hands to palm, (much like a cat kneading)
and using his thumbs to press along the sens lines on various body parts. “
The other sequences would be positions that would assist the patient in stretching muscle groups that would be difficult to do on your own.
I would then practice on him and learn successive sequences which would ultimately end up being an hour and half massage. Little did I know that in the process of learning Thai massage, I would become more mindful, more grounded and be able to better manage my own pain.
Thai massage involves rhythmic moving, palming up and down lines of the body, slow rocking, stretching and releasing tension throughout the body. When participating in these movements, it is necessary to be mindful of how the patient is doing, of keeping a smooth rhythm, feeling the stretch and being mindful of your own body mechanics.
“Each time that I do a massage for someone, my own pain levels decrease.
I breathe with the patients, I feel their relaxation,
stretch with them and I am in the present moment.
My mind is off of my own pain, …"
It is on the positive environment that I’m creating and the positive movements that I’m doing to help the person feel good in their own body. For CRPS patients who would like to do yoga but are unable to because of issues with pain, this may be a nice alternative.
“I have worked on patients who have significant health issues and/or injuries –
I am able to avoid or alter the moves and sequences to allow for better circulation ”
as well as to provide relief for all of the corresponding muscles and joints that work so hard to compensate for the daily pain.
Meditation, massage, yoga, alternative health and diet are all ways in which we can have control over our bodies. They are the tools we can use to help combat the pain we feel on a day to day basis. Regardless of which modalities we choose, it’s important that we communicate what we are able to do and have done to us. Thai Massage may not be for everyone, but for me the process of learning and practicing Thai Massage has been a gift to both my physical and mental wellbeing.
Submitted by Joanne McFadden
©Joanne McFadden 2018
Editor: Joanne has CRPS and lives in B.C. She is always exploring new ways to treat her CRPS.
Joanne runs the Aya Education Fund which assists schools in Tanzania.
My name is Ada Meecham and I have CRPS. Eight years ago I was run over by an SUV and my right side was smashed and broken. I was getting better and because my right hand was twisted severely and I had an elbow full of brass, the doctor suggested a small outpatient operation that would improve appearance and usefulness. I woke up screaming and even with Lyrica and Hydromorphone there was no relief.
I had just met CRPS.
Another doctor added Cymbalta two years ago and now with much positive thinking and 9 nerve blocks,
"I am having a life despite CRPS.
I live in a retirement home
and at age 87 encourage
everyone not to give up.
There is life with and after CRPS! "
MISSING FEMALE WITH DEMENTIA
On June 27, 2017, Ada Meecham,87, assisted the Durham Regional Police Service (DRPS) in a large-scale recruiting and training video production that will be used across the province to encourage and recruit the public to joining the police service. It will also be used for a training video for some of their specialty units.
Those involved included Toronto Police who came with their UAV (drone), EMS paramedics, Public Order Unit Officers (PSU), ATV officers, ground officers, DRPS officers, canine unit and marine unit.
The filming was based around a scenario of an elderly "Missing Female with Dementia" who was reported lost by her granddaughter. Ada had to dress in a nightie, slippers and housecoat as if she had wandered off and gotten lost. The filming showed her location and rescue from the woods.
In order to place her in the woods, she had to jump on the back of a DRPS ATV unit and ride across a large field to a wooded area. She was then filmed emerging from the forest guided by an officer into the arms of her granddaughter. An hour and a half of filming and 5-6 takes, from the ground and helicopter, and it was complete.
Source: Pringle Creek Press 2017.
Submitted by Helen Small
©PARC PEARL MARCH 2018
TIPS FOR TRAVELLING WITH CRPS
In the years of having CRPS, I have learned a good deal about what makes travel most successful for me. We lived on the west coast, with three grown children nearby, until my military husband was transferred to central Canada in 2013. Since then I have travelled by air, or taken the train, I have travelled for medical reasons as well as vacations. I hope that some of the things that have worked for me might help others in the CRPS community to be comfortable enough to try travelling again.
SUGGESTIONS FOR TRAVEL IN GENERAL
Water! Keeping many things as normal as possible during a trip is helpful to me. Municipal water quality can vary widely. If at all possible, we bring a jug to filter our water (r (i.e. a Brita), and I use it for drinking and to brush my teeth. Otherwise, I purchase bottled water.
Nutrition When eating food from unfamiliar sources and or preparation, I like to a take a daily immunity boost for while away and for a week after my return. My preference is a relatively inexpensive one from Costco, made by Health Balance and labeled as a Multi-Strain Probiotic.
Rest vs Activity Balance your time away with rest, and pay attention to your body. Despite wanting to optimize each day with activities and visiting, plan for resting times. Distractions may result in ignoring your body’s signals. For example, in Niagara Falls recently, we purchased a city pass to see the venues at our own pace. Had we paid for a guided tour, we would not have been able to stop and rest when I needed to. With the city excursion we still got a great price, but budgeted our time to include rest, and I was able to enjoy the sights more fully.
Train My only train experience is the VIA train in central Canada. VIA only has one spot in one car per train that can accommodate a wheelchair restraint system. If you need this, plan as far ahead as you can and book by phone.
One perk to needing this… The tie-down is in first class so I am given the first class seat at the lowest price of the day. This is a nice way that VIA compensates those with disabilities and they have been always very good to us whenever I travel. I also have the Easter Seals Disability travel card which authorizes me to bring someone to accompany me at no extra charge. (Please see links at the end of this article).
A small caveat is that the business has to be willing to accept the card. I have never been turned away but there may be a time that happens. The motion on the train is side to side, which I find tires the core muscles that keep me upright. Once my chair is strapped down, I tilt it back and lift the legs. This helps a lot. If you are sitting in the seats, consider bringing along a little footstool if pos-sible. I find being able to lift the legs helps with that motion. Walk about a bit if you’re able. One thing I really like about taking the train is that I am not exposed to pat downs and big security checks at the airport.
Airline Courtesy wheelchairs The air pressure changes, the noises, the security and more, make flying very taxing. Using the airport wheelchairs will give your body a rest when you really need it even if you normally don’t need one. The airport staff knows how to get you through faster and they are very helpful in loading your items for the security check. Conserve your energy!
Plan your flight I always ask for a window seat. The aisle seat can be brutal as people carrying their bags and children always seem to bump the aisle seats.
Air Canada has a disabled flyer application you can fill out ahead of time with your doctor’s signature, in order to request a seat, or a second seat if medically necessary. West Jet has a medical program as well, for temporary and permanent disabilities (OPOF--aka one person one fare).
After the initial setup, flights must be booked over the phone to the medical desk, citing the OPOF number where your medical requirements are stored. In my case the OPOF number tells them that I need a window seat in the front of the plane so I can lift my legs, and another seat for my service dog. On airline websites, please click on ‘travelling with a disability’ for more information.
Flying When flying, the air pressure, the recycled air, the turbulence, landing and takeoffs can all be a strain. Make sure you are comfortable. I suggest bringing warm socks and taking your shoes off because, well or not, feet always swell while flying. I have noise cancelling headphones which help reduce noise.
Most airlines provide entertainment, but be prepared with your own entertain-ment just in case- phone, mp3 player, tablet or laptop. Most airlines have their own entertainment app, so make sure you download their app before you get on the plane, Then you can watch or listen to things that are offered. I’ve found lip balm and a sleep mask useful, and I often take something for anxiety in enough time for it to kick in before getting to security. If it makes you a little drowsy that will be helpful during your flight. Stay hydrated with water! It’s better than pop or adult drinks.
Ship Travel - Ferry and cruise ships Ferry (my experience is with the BC ferry) Check the BC Ferries website if you’ll be travelling with them. There are discounted fares for residents, and there is also a program for its residents with disabilities to bring a caregiver with them for free. These must be arranged prior to travel. It is usually very busy on the ferry, so if you are affected by noise and crowds, I recommend the Serenity Room on deck six of the “Superferries “. There’s a nominal charge, but for me the quiet is worth it! They carry the latest newspapers and magazines, have some office desks for working at and provide light refreshments.
BC Medical will pay the ferry costs for Vancouver Island residents who have to travel to the mainland for medical care. This must be completed by a physician and be filed by telephone up to a month before travel. The number is on the form. You can get a pink TAP form at your doctor’s office that you can use to have your BC Health card cover the cost of your travel. You cannot file it after the trip so make sure to get it from your family doctor and phone the number listed on the form ( up to a month in advance) .
Please see: http://www2 .gov.bc.ca/ gov/content/health/accessing-health-care/tap-bc/travel-assistance-program-tap-bc
I have only been on 2 cruises. Taking a cruise is a good thing to do when you are disabled because the floors are all flat, there are elevators, and the rooms are always cleaned to high standards, There is a lot of entertainment and it can also be very relaxing. The way the ship is designed means there is little noise in the sleeping cabins. There is a wealth of information on the Internet regarding traveling disabled.
This is what I recommend, what works for me and why:
● Stay on board during the ports. The ship is much quieter in port with the cruisers off the ship. If you do want to get off, plan to go after those who were booked on excursions, and back on board before the line-ups of returning passengers.
● I brought along my own soft blanket to lie on. The housekeeper that looked after our room noticed it the first night and the rest of the time he had made the bed while we were out and tucked that blanket in as the bottom sheet for my side of the bed without asking! I didn’t have to do it myself. Just one way they try to make sure they are treating the guest!
Wheelchair: Check the total width of your wheelchair and the cabin doorways with the cruise line. My wheelchair was too wide and I borrowed a narrower scooter, as the wheelchair accessible rooms were interior rooms and we wanted a balcony.
● We really liked the cruises for the entertainment on board. It was great to be able to leave, lie down for a while, and return when rested.
● Excursions.... We were hit and miss on whether the tour was indeed handi-capped friendly. The tour operator verified that the tour was wheelchair friendly, and I spent in excess of $100 but had to leave my scooter behind. Not sure what our options would have been if it wasn’t still there when we returned! Be wary. In our case the owner gave us a virtual tour of his property, but it was not worth it. If possible check out the excursions on line well before you go on the cruise.
CONCLUSION: Once you have returned from travels, DO NOT assume that you can fill your days again after getting home.
“Our bodies can rise up to the challenge (of travelling ) a lot but if you do not build in proper rest breaks, your body will not sufficiently bounce back. You could find yourself enduring a lot more pain or even becoming very sick!”
I have learned this lesson the hard way and hope to encourage you to avoid that! Do what you can to make sure that you are not heading back to work/ appointments the day after you return.
Handicapped Parking Pass Bring along your handicap parking pass (if you have one). Often this will get you free parking or longer hours for the same amount. In Canada, different provinces offer different things.
In Ontario you can park anywhere, even no parking zones if you have a placard. Some venues, such as hotels will offer free parking if you need a designated handicap spot. Many venues will provide discounts since you are not able to do all of the things at their venue.
Many amusement parks will have tables specifically for those with handicaps. They will ensure that the table is cleared of able bodied people when you need a space. The first few times this happened for me, I was shocked! Now I really appreciate it.
“It is important that you keep in mind that your body is not always able to do what it once could.”
Rather than putting a stop to travels and exploring, just try to be aware and build in time for recovery. Remember to pace so that you might be successful enough to not need to pay the price of admission, so to speak.
Submitted by Fern Kwantes.
Editor: Fern is a longtime CRPS Survivor and PARC member. She was featured in a “Collar of Duty” episode on Animal Plant. Please go to: www.animalplanet.ca Search for Collar of Duty Episode 6. Fern talks about CRPS and her service dog Bella.
CRANIOSACRAL FOR CRPS
I have tried many therapies that are generally recommended for CRPS. Some have been helpful and others either caused flares or had no effect.
“As we all know, CRPS is finicky and it appears that
there isn’t one treatment that will work for every single person”.
This brought me to a place where I could look at calming my central nervous system as opposed to dulling the pain, or general pain relief. Fortunately, I work at Ocean Wellness, a health clinic where there are several different treatments for countless injuries and ailments.
I began having craniosacral when I was a teenager and found it to be a way to guide the body to heal itself. Due to its light touch, the gentle guiding of biomechanical and energy pathways and for the subtle reconnection to your body – I felt that this may be a good idea to try again.
Craniosacral is a very gentle, hands on therapy that works with the craniosacral system – made up of the membranes and cerebrospinal fluid that surrounds and protects the spinal cord and brain. Practitioners release the restrictions in the body to help improve the central nervous system.
“Sessions are generally an hour, and involve a very slight touch
on various parts of your spine, head, neck, or feet.”
Brenda Pulvermacher is my practitioner; she has extensive training and was quite interested in how we could set my body on a healing path. Brenda starts her sessions with setting an intention. This is a way to focus on a positive, to not get “stuck” in the situation at hand. This intention can be anything at all, to accept your situation, to release pain and anxiety, to calm your system or whatever you feel is challenging.
“The most helpful intention has been to calm my system,
to allow my body to heal itself.”
After each session, my left foot (the one afflicted with CRPS) returns to normal temperature and colour. My entire body feels akin to that feeling when you have taken a long slow breath, have exhaled and feel like you are filling your body with rejuvenating life. That feeling of presence, of calmness, of connection to your body part that often feels like it has betrayed you – is a feeling that inspires hope.
I have had successive sessions of Craniosacral therapy,
and find that I can connect more,
I can self-calm, and I can remind my body that it has
the ability to re-wire itself to provide a pain free existence.
Brenda mentioned that it is important to find a practitioner who has more than casual courses in Cranialsacral. www.upledger.com has lists of courses, information and you are able to search for a qualified practitioner.
This therapy has been a positive alternative to other hands on options. It calms rather than flares, and can also help with any anxiety or depression that comes along with this disease.
Submitted by Joanne McFadden
Joanne is a PARC member and has CRPS. She lives in the Vancouver area. Joanne manages a charity which helps schools in Tanzania.” The Aya Education Fund.”
Every day, those with CRPS soldier on and live their lives despite chronic pain. This page is a tribute to those who are doing something special with their lives such as helping others or spreading the word on this disease. Some have a loved one with CRPS. Some lost their loved one. We commend them all for their fortitude, perseverance and courage. We salute them for carrying on despite the numerous obstacles they face every day, while living with this disabling disorder.
Recently, the Olympic Torch was the vehicle for bringing about awareness of CRPS in Canada. Thanks to those brave patients who carried the torch in 2010! Read Paula Orecklin's story.
They are a tribute to the breadth and strength of the human spirit. May they uplift us all!
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, CRPS 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 afterCRPS, 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) CRPS/RSD does not define you.
You can have a fulfilling life with CRPS/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. CRPS 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 CRPS, 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 CRPS. 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 CRPS 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 CRPS: 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 Dec. 2011
reprinted from PARC PEARL WINTER 2011-2012
©Sarah Ruggins 2011
Update 2017: Sarah has finished her PhD and continues to do well.
Ayala is a wonderful, resilient young lady living near Ottawa. During the first minute of a floor hockey game at school when she was 10 years old, she was hit with a slapshot of the puck to her knee, which was the trigger to her CRPS. Ayala and her family has had a roller coaster ride, like many other children and adults, with finally getting the proper diagnosis, searching for the best available treatment, and in receiving understanding from her peers and relatives.
Aya is rising above her pain, and has dedicated herself to creating a web site with a positive outlook that leaves visitors to her site with a sense of hope and inspiration. Her site, has brought attention to and created a greater awareness of CRPS through interviews in major Canadian and local newspapers and CBC Radio.
Ayala plans to update her site and is the midst of compiling and writing a book of poetry and songs (as well as a novel in the works!) and intends on using its proceeds toward CRPS research.
UPDATE April 2002: Ayala Ravek will be receiving the Ontario Junior Citizen of the Year Award in April from the Lt. Governor of Ontario .Congratulations Aya!!! We are very proud of you!
UPDATE June 2004: Canadian Living Magazine features "HEARTBEATS" with a photo and article about Ayala and her fight against CRPS.
Toronto Star June 3, 2004 Section G: features Ayala and her story on CRPS. You may be able to find it online at www.thestar.com and search by subject.
As Aya likes to quote, "Positive thinkers feel the intangible, see the invisible, and achieve the impossible."
At the TEEN CORNER, feel free to e-mail her with any questions or ideas. To visit her site, please visit our links page.
OUR POET PHYLLIS
Phyllis has CRPS and lives in Oceanside, CA. She is married to an engineer, has 2 sons, 2 grandsons and 1 granddaughter. Her greatest love is interior decorating and she also enjoys floral arranging ie. weddings, parties etc. Since being diagnosed with CRPS, her new profession is 'therapy' mental and physical.
" I write now because it helps me to understand myself and it gives me a 'release' of sorts. I can write what I feel, no one has to listen to me complain and you only read my work if you want to. I have recently heard from a few people who have read my work; their comments were the same, "'You wrote just what I am feeling.'" I started keeping a diary at the request of my psychologist, who encouraged me to continue. I began putting short poems into my diaries to him. Before I knew it, I had written 30 poems. Writing seems to give me a purpose."
UPDATE: Two of Phyllis' poems will be published this year. Congratulations, Phyllis!
A CONVERSATION WITH PAIN
by Phyllis Van Wormer
Pain, why do you pierce and poke at my poor body.
You have plagued me for years, I ask you now, go please.
I searched for a palace, tall and proud -- I needed a pristine dwelling
in which to store my power.
Palace, pristine, proud, you must be mistaken? Those words would never
Pain, leave me now, for I tire of thee.
Remember, years ago, the very first time you acknowledged my existence.
You were tall and proud, your body a palace of pale pink.
Your soul was pristine.
You were the prize I sought, the palace I conquered.
After all, you were promised to me.
Yes Pain, I remember, with your cruelty you plundered my body and
pillaged my bones.
Life seeped through my pores as my blood flowed like a river, pooling
around body. As I gasped for air, the warm red fluid filled my lungs.
Oh, I struck you hard, I did. I took over your body as you began to
breathe your last breath. It pleasured me so, to conquer one so pure.
I was praised highly for that fete.
I stood over you proudly, each time you grimaced, or when a tear rolled down your cheek.
Your pallor was no longer pink, but shallow, like plaster before being kissed by the sun.
But I fought back, Pain! For prolonged moments you were gone.
I remember floating in a garden of blue; rays of light poured from beyond.
It was then I heard a far away voice, it called out to me.
A pitcher of pure gold appeared; it contained a scant bit of powerful brew. It was all I needed to escape thee, Pain.
Piece by piece, I rebuilt my body and my life.
It was plain to see, I became more powerful than thee.
Yes, you took control-- but remember I returned the next year.
You paid a handsome price for besting me. I pounded and pelted you with sorrow and hurt.
Your prior victory crushed, I proudly preened while my peers bestowed me with their cheers.
I remember how you pierced my heart and punctured my soul.
My sweet child was sacrificed to give you pleasure.
You plucked her from my womb --alas, that was the price I paid for besting you.
Yes-- I saw you weeping-- you cried from the punishment I bestowed upon you. Your heart pined for the pretty babe.
But once again I rose up, I found more power; I fought you off. As long as I could keep you from your pleasure --
I found peace. I've proclaimed you my palace. There is no part of you strong enough to fight me now.
My pleasure is your plight; I will see you undone.
Please pain, I've suffered enough. You are constant now, never ending
in your pursuit to punish me. Your power has plainly out done me. I've
protection from your wrath.
And oh, the pleasure! You are my prize. So proud am I now that your
future is mine.
Pierce through my body if you must, pound on me with all your might.
I promise you now --you will not take my life --you cannot have my soul.
Struggle if you must --but like a pest, I shall remain.
Is there no compromise, Pain? I need purpose in my life. You have
pillaged me so; must you now devour all that I am? Have you no passion,
why must I plead for a moment of peace?
I offer you a challenge --- ignore me if you can. You claim to have
power--use it, push me away.
I accept your challenge, Pain. My life will be rebuilt --I will ignore
you. Each breath I take will inhale power --and exhale Pain.
For many years, Eric has been a well known crusader for CRPS. Based in Massachusetts, Eric has sent out information, contacted, and arranged for medical assistance for countless people around the globe. At the International RSD Foundation, he quietly works behind the scenes to help those with CRPS get the help they need.
His tireless efforts have resulted in three excellent CRPS conferences in 1995, 1997 and 2000. He coordinated the Winter Medical Conference (Nov.30-Dec.2,2000) in Orlando, Florida. A year and a half in preparation, the conference was well attended by 160 patients and 68 professionals. It was well organized, informative and of great benefit to both doctors and patients. Eric is also assistant to Dr Hooshmand, a well known neurologist who treats CRPS patients. Dr Hooshmand has since retired but Eric continues to help patients.
We wish to acknowledge Eric's many years of hard work to promote awareness, educate the medical community, assist patients and promote research even though he has longstanding RSD. Eric is proof that having CRPS means one can still accomplish great things. He continues to be an inspiration to us all.
Eric is walking again after a long road of rehabilitation. Your dream came true, Eric!
Please visit the International RSD Foundation at our links page.
MY DAD: TONY
This wonderful letter was written by Tony's son and received by PARC in May 2001:
I would like to nominate my Dad. Since I was 6 years old I been living with my dad. He has rsd in his arm and now in his leg .He has had it for over ten years now. My dad is the best dad. He is the coach of my soccer team. He also is a member of the parents association at my boys and girls club in London. My dad is the person that started single fathers rights groups in London and has helped lots of dads get custody of their children. My dad is always in pain and can't do lots of things he wants to but he does not let me know how bad it hurts and he is always here for me when I need him. My dad has information on his web site to help other people with rsd and single fathers learn all they can. My dad is the best dad in the world. He helps all people that need his help and never asks for anything back. He just wants to help people learn.
Jacob McPhee I am 10
Editor's Note: Tony has been the mastermind behind the PARC Awareness Campaign to educate Canadian doctors aboutCRPS. We thank him for contributing countless hours to the CD project which is currently in Phase 1. Way to go Tony!
A memorial site for 10-year-old Lisa Shore, whose death at the Hospital for Sick Children in Toronto, Canada on October 22, 1998, was found to be a homicide by a coroner's inquest jury. Lisa died hours after going to hospital in severe pain from a flare-up of CRPS. The web site is an effort by Lisa's family to seek justice for Lisa's wrongful death.
UPDATE Nov. 2004: Read about the struggle by the Shore family to find out the truth about Lisa's death in a new book written by Sharon Shore, mother of Lisa. An excerpt from the book: NO MORAL CONSCIENCE.
LIFE BEFORE AND AFTER SPINAL CORD STIMULATOR
by Bryant Frazer
I had my Dorsal Column Stimulator (DCS) implant surgery and this is how my journey started…...
My name is Bryant, I’m 43 and, I was rudely introduced to the world of CRPS (formerly known as Reflex Sympathetic Dystrophy) back in January of 2000. My CRPS was a result of Thoracic Outlet Syndrome surgery (TOS). I had the top rib removed on my right side, to repair the effects of TOS, and that is the day my life changed. I awoke from the surgery in severe pain thinking that it was the result of the surgery. I spent 3 days in intensive care and then was released from the hospital, to recuperate at home.
I live in Northern Saskatchewan, just over 500 kilometers (one way) from Saskatoon where the surgery was performed. So one can imagine my trip home after a few days stay in Saskatoon was quite the ordeal.
So after three months of sleeping on the couch, (I couldn’t sleep flat at all,), a complication from the surgery, I returned to see the surgeon. The surgeon took one look at my hand and then after a “little” complaining on my part about still having severe pain, and seeing the swelling of my hand, figured it might be CRPS and sent me to another doctor who had knowledge of CRPS. This surgeon set me up with an appointment in the pain clinic that day.
That is when I had my first of 6 sympathetic nerve blocks using Guanethidine, one per week, for 6 weeks. The first few had some effect and relief, but only lasted for a day or so, and didn’t totally relieve the pain. But any relief at all is welcome, even if one has to travel for the treatment.
During this time I started physiotherapy. No one had heard of CRPS in town where I live. The therapist called the pain clinic and finally came up with a program that might work for me. In between the trips to Saskatoon for treatments, there was the daily physiotherapy routine.
I was off work for about 8 months doing physiotherapy, I decided to go back to work in the modified work department at my company. At least I could make an income for all the trips I had to take. On the final trip to Saskatoon the stellate ganglion block worked for a while, but in the end I was back to where I was before with the pain.
By this time, the effects of CRPS were starting to show in my right hand. Clawing of the hand had started and the muscle and tendons were shrinking. To this day my hand is still clawed and I have lost all fine manipulation and strength in this hand, but I haven’t lost all use.
During this time the doctors were also trying different pain medications to find me some relief. The drugs either didn't work or I had drug reactions. This was also the time (2002) that I had another change in my family doctor, the second one since this began. Living in the north this happens quite often since most of our doctors are from out of country and are only here on contract.
During that time, I just gave up, and went on with the way I was. So here I was still with no pain medication and no real treatment plan. There is no one to blame for this, it is the way I felt at the time. By the fall of 2002, I realized that I had to get back to seeking treatment, and saw my doctor who set up appointments for treatments again.
In the spring of 2003, the specialist suggested that I had an ulnar nerve entrapment and should consider surgery. I was hesitant about returning to the operating table, ( and so was he), so he wanted to try a few stellate ganglion blocks first to reduce pain. At first, there was some relief and the block worked for about a week.
After a few more trips back to have more blocks, the decision was made to have the surgery. Now of course this just didn’t happen over a couple of months, and during this time I was also working so my treatments were scheduled around work. I was on the waiting list for the surgery, in October 2004.
Before surgery, I had a block and the ulnar nerve release, (wrist., elbow) was a success. In my hand, some of the pain was gone, I had more movement and also a little less clawing of the hand.
Afterwards, over time, I had about 8 blocks but they stopped working. Then the pain clinic doctor suggested that I see a neurosurgeon about a Dorsal Column Stimulator (DCS). I was put on the wait list for surgery which would take until spring of 2005.
NOTE: Bryant tells how the DCS changed his life in part 2 next issue.
©PARC PEARL June 2006 issue.
PART Two: LIFE AFTER SCS(DCS)
Before the DCS surgery, I had issues to deal with: depression, medications and anger. During the past 3 years, I was battling depression. It took time to realize that I was depressed and to really accept it. There were also problems finding a medication that would work. I tried 3 medications and finally found one which helped..
Just as important were the issues of anger. Before all of this happened I was the happy go lucky type, but somewhere along the way I turned into the angry "go fly off the handle type."
The meds did settle me down but I needed a higher dosage. I was also going through counseling with a psychiatrist. Having someone to talk to who was non-judgmental was very helpful. (Not that my family or friends weren’t sympathetic, but after a while it was hard on them too). I also had a reaction to meds. I was having a bad day, and somehow lost control of myself.
This all took place about a week before my implant surgery. It was my lowest point throughout this whole experience. I guess that is what happens when one feels like there is no way out, even though there is relief just around the corner. It shows you my state of mind at the time.
During the second year of the CRPS, while surfing the net, I found RSD Canada (PARC) and the web site. I am grateful for all your help and support.
SURGERY AT LAST
My surgery for the DCS was performed in May of 2006. The surgery was done in two parts. The first part, the trial, and then the unit is then implanted into your body. The surgery is done while you are awake; a local anesthetic is used to freeze the area around the surgery site. This is done so that when all the leads are in, the unit can be turned on and then adjusted. A wire protruded from your back for the trial period; it connects to the trial DCS unit. The trial DCS is disconnected at bedtime and re-connected in the morning. This trial period lasts 1 week and then the actual DCS is implanted. The operation for the trial lasted about 2 hours. I was released from the hospital the same day.
Once the wires were in place, the unit was turned on. I felt instant relief immediately. There were a few minor adjustments, but it worked successfully. There is no feeling like the one you get after battling pain for 6 years then as fast as a button being pushed, the pain is gone. The DCS worked so well that I only had it on for 5 to 6 hours one day, and the relief lasted well into the next day.
The actual DCS was implanted exactly one week later. This operation, under local anesthetic, lasted about one hour.
The unit is then turned on, and checks are done again to ensure it is working. There is an 8-week period after this surgery where no twisting, bending, or movements can be done or leads will move. I can feel the unit under my skin, and it took a little time to adjust to it being there. To turn the machine on and off there is a remote. The remote is held over the unit (touching the skin), and can be either turned on or off, or the intensity can be raised or lowered. No other adjustments can be done.
After the surgery, I was a different person. Gone was the grumpy highly aggravated person, out went the pain meds and I slowly weaned off the anti-depressants. I still have to be aware of the leads inside and the unit. I use the unit now almost everyday as I’m becoming more active. There still are days when pain can be an issue, but the pain is much less than it used to be.
There are places to be aware of now. Any store with a theft detector, all airport security, or any place with a large magnetic field around it. These types of devices can cause problems. All of this information is in the book that you are given before surgery and in the DCS manual.
Since the surgery, I have had my post op check up, and so far all is going well. I will return again in September. As far as recommending this for someone else, all I can say is that it worked for me. My problem now is in taking it easy, I feel so good that I believe I can do things that I could do before, however, when reality sets in the CRPS lets me know that I overdid it. At least there is relief now.
I would like to thank all who were involved with my DCS surgery; I couldn’t have asked for better treatment. I would like to thank Dr. Cowie at the St. Paul’s Pain Clinic in Saskatoon for his great medical care and setting the surgery in motion.
It is so important to have someone to talk with. Without family and friends, I wouldn’t have done as well as I did. Along the way friends will be lost, (some people just can’t understand what happens to a person with CRPS, and they are not to be blamed for their ignorance), friends will be made, maybe old ones found, and life will go on. Even family will have trouble understanding, but being family they will eventually understand in their own way and, in their own time.
My final thank you is for my wife Donna. Without her support I know I would have not made it through this whole journey. She has been there since the beginning, has been my shoulder to cry on, my sense of reason, and my strength throughout. It takes a special kind of person to be there for you.
THANK YOU !!
©Bryant Frazer 2006
Editor’s Note: PARC thanks Bryant for sharing his DCS story with us. We hope that people will benefit from his experience.
THE CAREGIVER'S ROLE
by Daphne Demarell
HOW DO YOU DEAL WITH THE FRUSTRATION AND HELPLESSNESS (OR OTHER EMOTIONS) THAT MANY CAREGIVERS FEEL?:
WOW! THAT IS A LOADED QUESTION!!!!!!!!!
How many times have we both felt helpless and frustrated..............I sometime think it was a case of trial and error, what will work for some will not work for others.
When you both get depressed because there doesn't seem to be an answer, I think one of the things that I really concentrated on was not getting depressed about it (especially at the same time).......this was not going to beat us.....we were going to get answers to our problems and understanding RSD/CRPS was the key.
One of the most frustrating things for us was the fact that Herman was not diagnosed with RSD/CRPS until 2 years after his accident, we found out that many things like cortisone injections, etc were not the treatment that he should have had
We had our shouting matches, when Herman became depressed (as is normal) because of the pain, frustration with doctors, medications and probably even ME I became a good listener, you do not always have the answers, but, just being there and listening was the key to knowing exactly how he felt.
As time progressed and we understood why he was having more and more symptoms that were natural with CRPS..................I went to his doctors' appointments with him and the RSD articles in hand, sometimes it went over well, at other times I think some doctors would have liked to have thrown me out, but, at least his regular Dr. became sympathetic and understanding about it and did admit that we knew more than he did, this was reassuring as it was only him that could make sure that Herman did get the treatments and medications that he needed.
There is no perfect answer, but, this is how I handled it and it has worked for us!
©PARC PEARL 2006
Sadly, Daphne Demarell passed away in 2008. She left us with a marvellous story and her love for Herman.
MY RSD STORY
by Herman Demarell
In 1991 I had the index finger of my left hand crushed at work on the Diamond Drills.
I was seen at a hospital in Quebec, where a bone specialist was contacted to look at the X-rays. He said there was no immediate problem, so I went home and was to see my own doctor in about 10 days. When my finger was x-rayed he noticed that the bone of my middle finger was split, so I was referred to a bone specialist, where I was told that he would have to remove the tip of the finger so that the rest of it would heal. It was removed just below the finger nail.
This operation was done in April of 1991 and immediately after it I was experiencing excruciating pain. He could not understand why I was having so much pain and administered Demerol and gave me Tylenol 3 to help ease it.
This pain continued and I noticed that my shoulder was getting stiff. Within a month my shoulder was frozen and he injected cortisone, which did not help this condition. I was referred to physiotherapy and had a TENS machine, which I used every day at home.
I found the nights the worse, I would be up most of the night walking the floor and could only sleep for a period of a couple of hours at a time.
After each physio treatment I was in agony for days and the pain was unbearable. By this time I was also seeing my compensation doctor and he stated that I should have had a nerve block, but, that it was too late now and that I should discontinue physio as it was not helping me to regain any use of my hand and for me to continue trying to use it and doing exercises as my hand was now frozen into a claw. I had little use of my hand and the pain radiated from the middle finger up my arm and to my shoulder. I was told that I had what was known as shoulder, arm, hand syndrome.
Over the period of the next few years I was sent to a pain clinic and other specialists, which all stated that it was too late for a nerve block, but “hopefully the pain would go away.” They now confirmed that I had RSD/CRPS which was irreversible.
My skin got very sensitive to the touch and I found that loud noises could trigger my pain. I started wearing a glove on my left hand at this time, as it seemed the movement of air would also start my arm paining and this seemed to keep the air off of it. I still wear this glove.
I was still on Tylenol 3, but, was also prescribed other drugs which had no effect on the pain. I was a firm believer in trying to keep busy to keep my mind off of the pain, but, it was getting harder all the time.
In April of 1999 I started experiencing a jabbing pain in my left rib and the pain would radiate around the waist and down my left leg which made it difficult to walk any distance.
I also found that the pain would spread across my shoulders and into my right arm, also causing headaches.
Cold sensations started in late July and I was in constant pain, I found I had to wear a polar fleece jacket and wrap myself in blankets to try to get warm.
I broke my rib in September of that year and was prescribed Oxycocet, it seemed to help the pain some, but, I found that I was having to take more and more all the time to relieve the pain. It was then that I realized that I was addicted to them. I had to go through a dependency withdrawal and it was not pleasant. I went back on Tylenol 3, but, the pain was much worse now.
I was taking a drive one day to commit suicide, I did not know where I was going, but, I couldn’t live like this anymore in such pain. As it happened, my wife saw me driving from where she worked and stopped me and told me that she had called our family doctor to ask him if he would prescribe some Percocet for me, which I am still on and seem to be able to keep taking about 5 to 6 a day to control the worst of the pain. I guess I was not meant to die at that time!
I went to London to a nerve specialist that stated he didn’t know if operating on my finger to fix the neuroroma would relieve my pain or make it worse, which if that happened I would have to go on stronger medication.
I have been very lucky because I have a wife that stands by me and listens to me WHINE!
We moved to British Columbia in August of 2001 and I have been seeing a doctor here that has treated RSD/CRPS and has been monitoring my situation. He prescribed Gabapentin. It did not work for me, but, it has been tried very successfully on some other RSD/CRPS patients.
SOME HELPFUL HINTS THAT WORK FOR ME:
* When I have spasms in my hand and arm the pain is unbearable and I find that if my wife applies wet, hot towels with Epsom Salts, I can get relief from it. I cannot even think to get them myself because the pain is so intense.
* I have a “Blanket with a Brain” and cannot sleep at night without it, as I get so cold.
* I wear micro tech fleece underwear that is so soft and warm it also helps me to get through the night.
My Story: Yolande Clement Feb. 2016
Yolande, a resident of northern Ontario in Canada has made a video about her journey with CRPS. It is a success story that we are proud to share with you
It underlines the importance of catching and treating CRPS early in the course of the disease.
Her story is in 8 parts similar to a book. Good work Yolande and Leo!
OLYMPIC TORCH BEARER: PAULA ORECKLIN
Paula is signing the Olympic flag before her 300m run.*
On January 9, at 8:37 AM, in Virden, Manitoba, against a ferocious prairie windchill, Paula Orecklin carried the Olympic Torch for 300 meters, as it crosses Canada to the Winter Olympics.
Paula carried the torch on behalf of the 2 million Canadians who, as she does, live with RSD/CRPS.
Her goal was to carry the torch without the aid of a wheelchair or canes.
Paula accomplished her goal.
The following bio was read out at the community celebration after the torch passed through Virden. As the Olympic committee person read this, the audience, a few hundred people who were packed into the Legion Hall (there was standing room only) interrupted the speaker to give Paula two rounds of applause:
"In 2001, an injured ankle led to Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome, an incurable chronic pain disease. This is a life-changing debilitating medical condition.
Paula hurt her right ankle when she was 13, and in a Grade 8 running event. When the injury healed, the pain continued to escalate. It took 18 months of doctors' misdiagnosing and mistreating her ankle before a physiotherapist at the Children's Hospital asked us if anyone had mentioned "RSD" to us. If RSD is recognized within 2 or 3 months of the initial injury, apparently it can be successfully treated. As it was, like so many others, it was too late for Paula, and now she must live with a chronic pain condition. It turns out, we discovered, that chronic pain conditions are not well-taught in medical schools -- veterinarians spend more classroom hours than medical students do in learning about chronic pain.
This problem is one of many chronic pain diseases that are not very well known, but are widespread. RSD ranks at 42 on the 0-to-50 pain scale developed by the McGill University Medical School. Cancer, by comparison, ranks at 28. Cancer, however, is widely known and research to find cures is funded in the millions of dollars. It is estimated that about 2 million** people in Canada and about 6 million in the USA suffer from RSD, and yet very few people are familiar with this condition. As more children are injured in sports, this is also becoming a pediatric problem.
Canada has P.A.R.C. - Promoting Awareness of RSD/CRPS in Canada. In 2008, PARC sponsored Dr. Shulman's (a Toronto area pain specialist) RIDE TO CONQUER CRPS, a cycling marathon from Toronto to St. John's to promote public awareness of RSD.
Paula running with the Olympic Torch.*
**PARC NOTE: There are no epidemiological studies which can tell us how many people in Canada are afflicted with CRPS. It is estimated that 1 in 60 carry a lifetime risk of developing CRPS.(Source: Northside General Hospital Pain Clinic, N Sydney, NS)
*Congratulations to Paula Orecklin for bringing awareness to Canada. You are the power of one, Paula!
Carrie-Ann also carried the Olympic Torch in Ontario and brought awareness about CRPS.
NOMINATIONS: WE KNOW YOU ARE OUT THERE.....
If you know of anyone who is very special person with RSD/CRPS, (or a loved one), and deserves to be recognized for their talent or work he/she does, please tell us about this unique person and why he/she deserves recognition.