Other Success Stories and Testimonies
Other Sucess Stories
At 52 years of age, in December 2007, Roger was diagnosed with “bilateral lower extremity CRPS Type 1”. Five endless years of dysfunction and increasing disability followed. Motivated by an intolerable life and following much trial and error, he revised his treatment plan and his feet finally began to improve in 2012. After another very difficult but rewarding 18 months Roger finally became and continues to be completely symptom and pain free.
Check out his story and treatment plan with the following link (you may need to copy and paste it into the web bar at the top of the page):
Theresa- As an athlete in her forties, Theresa developed CRPS following a a sporting injury to here achilles tendon. After a challenging six months almost completly bed bound in debilitating pain she started a graded rehabilitation program based on a combination of pacing, stress reduction, integrated movement of her affected limb and walking. She now is back working full time and walks over a mile 3 times aday. Her dedication and determination have paid off with fantastic results. In her own words.........
My CRPS came on in November of 2014 and, in less than six months, my left lower leg had completely atrophied and frozen in a “toes down” position from disuse. In addition, I quickly developed many of the systemic symptoms that don’t usually come on until much later, such as breathing difficulties, vision problems, sound-driven adrenaline surges, severe Renaud’s Syndrome in both feet, extreme fatigue and digestive problems. Within four months of contracting it, I was not only in extreme pain (10 out of 10) all the time, but lame (totally unable to walk) and very, very sick.
While the doctors were still trying to diagnose me one threw out the term “CRPS”. I did some preliminary research and quickly realized that if this was to be my lot in life, I wasn’t long for this world. Fortunately, Roger Carlsen had just published his story on the RSDSA website, and I found it while looking there for information on the chances for complete recovery. Once I had finally been diagnosed and realized that the specialists were just clutching at straws with exotic treatments, I decided to take control of my own recovery. I utilized Roger’s pattern to set my own path, working within the specifics of my situation.
First I had to relearn how to walk. This began as a slow lurch down a hallway and back, leaning heavily on a cane with my left leg stuck out to the side (the Achilles tendon had shrunk and I could not get my foot under me) for five minutes three times per day. This graduated to one lap around the yard (400’) as my legs would not tolerate walking on pavement. They seemed to prefer the soft (albeit uneven) surface of turf over asphalt so I went with it. One lap turned into 10 four times per day. From there I graduated to walking on the road beginning with 3/10 of a mile four times per day. I would slowly add one tenth as my body adjusted (usually 1-2 weeks) to the last walk, then the third walk, then the second and so on until all four walks were at the new distance. It took from April 1 to December 31 to get my walks to one mile each. (I dropped down to three per day when I returned to work full time as there simply weren’t enough hours in the day for four.)
In the meantime I also found that mental exertion of any kind triggered a flare in my bad leg. To combat this and retrain my brain I signed up for lumosity.com and began playing brain games. At first I could only do 3 games in a row before experiencing burning in my leg. By the time I quit using it five months later I could play the games at will for hours without a pain response.
For me one of the worst parts of CRPS was being essentially bedridden for five months. I was desperate to get outside, and I thrive on a more “organic” approach to health and fitness. Rather than a regimented routine I began by simply trying to perform yard work. My first attempt consisted of sitting on a chair and pulling one weed at a time in a raised bed for a few minutes at a time. Slowly, over time I added filling and maintaining bird feeders, planting flowers and shrubs, weed-eating, pooper-scoopering, trimming bushes, etc. I tried to do a little more every day and found that the sunshine and fresh air seemed to do as much good as the physical activities. Yardwork requires balance, coordination, bilateral, reciprocal, and random movements utilizing your entire body.
Additionally I taught myself to juggle. This required mental exertion (helping in the same way the Lumosity did), balance, coordination and (most importantly) required me to relearn how to stand still in one spot—something I had not been able to do for months. Something else I found useful was a hypnosis download specifically for CRPS that I found at http://www.hypnosisdownloads.com/pain-relief/crps-treatment . I listened to it 2-3 times per day for several weeks. (On a side note, I also completely cut out all caffeine from my diet—to this day I now only allow myself 1 cup of black tea in the morning…whereas I used to drink half a pot or more of coffee per day.)
Five months later I was able to move to a new city, alone, and return to work full time. By then I was still only walking 8/10ths of a mile at a time. I held my activity where it was while I let my body and mind adjust to all the changes I had undertaken. After two months I decided it was time to add more formal activities (plus I had moved to an apartment and no longer had a yard to work in). It was then I added exercises consisting of “the ABC dance”, toe pick-ups, and ball dribbling—all exercises that Roger used. I have only been working with these for two months now and can say I am seeing progress weekly now as opposed to monthly.
I am now to the point where I am walking over 3 miles per day cumulatively, beginning to take stairs regularly at work, can cook and care for myself and my apartment without special accommodation or discomfort, and live my daily work-a-day routine without fear or pain. I have a “sit/stand” desk at work and can stand for 90 minutes at a time multiple times per day. I have not had any of the systemic symptoms for many months now. I am not “all better” yet and know I still have several months to go before I am totally symptom free, but I fully expect to have completely reversed CRPS by the end of 2016. I plan to return fully to the outdoorsy and athletic lifestyle I once enjoyed and will accept nothing less! That determination is what carries me through the setbacks, frustrations, and plateaus, and it will see me through to the end of my CRPS.
Jan Bohan- Developed CRPS after recieving treatment for brest cancer, she found the Royal National Hospital for Rheumatic Diseases at Bath, UK and Acceptance and Commitment therapy (ACT) really helpful.....read her tesimony below:
"I was diagnosed with breast cancer in 2007 resulting in an operation followed by radiotherapy. All went well in terms of the cancer but then I got an infection in the breast which was then successfully treated.
It was after this that I noticed that my side, the same side as the breast cancer, was blue. The consultant had never seen or heard of this before so I doubted myself! It was then that the pain started.
It took a further 5 years going through several different consultants specialising in different areas, to get a diagnosis. Diagnoses ranged from a result of the operation, nerve damage, in my mind and intercoastal neuralgia.
I researched on the internet & came across the Royal National Hospital for Rheumatic Diseases & their specialism with complex regional pain syndrome. I sent a couple of e-mail querying if this was something I may have & was referred by my GP.
It was confirmed that I had CRPS & I was admitted for a two week education programme where we learnt more about CRPS, had a programme of physiotherapy, hydrotherapy & occupational therapy. We also learnt from the experiences of each other.
This two week programme was amazing not least because they knew what I was talking about, the first time in five years I had been heard.
I found all of the exercises beneficial although challenging at first as moving my side with the pain seemed counterintuitive (& hurt)
The occupational therapist used a therapy called ACT, Acceptance, Commitment Therapy. I found this particularly useful & when I left Bath I read more about it. This therapy suggests you accept the pain for what it is, pain, & commit to still living the life of your personal values although that may have to be paced. Another key feature of ACT is mindfulness which I found useful as a part of pacing.
The most important aspect to me was that this therapy accepted the pain and supported me to deal with the suffering that comes with pain. Since I began to see the pain as just pain & could live my life I didn't get swallowed up with the emotion, depression, helplessness or hopelessness of pain but started to do the things that were important to me & look after myself.
Another similar therapy is self compassion which I also found useful & which empowered me to cherish & honour myself. Both approaches compliment each other. (See Suggested reading for details of these therapies).
I still experience pain but with active management the level has reduced. I still get tired & often become out of balance & have set backs & flare ups. I still have to pace activities & to sometimes choose between activities but I feel that I have more of the life I want & am no longer left to wallow in the suffering.