Dear Family and Friends,
What an eventful year since last Achilles Walk in 2009. I had a good year + of mostly remission from Complex Regional Pain Syndrome (CRPS) / Reflex Sympathetic Dystrophy (RSD). I went back to work and completed my post-doctoral hours in clinical psychology. It was such a great feeling to give back to others, what I knew about first-hand. In health psychology, I was even able to help some fellow CRPS sufferers. It made a huge difference to patients to be understood, as this bizarre neurological condition is completely under-recognized and under-diagnosed by physicians. That is why RSDSA is so important in terms of promoting knowledge, awareness, support, and research funding. CRPS (new name for RSD) affects between 200,000 and 1.2 million Americans.
In March 2009, I attended the RSDSA conference in Scottsdale, AZ and met tremendous people, both professionally and personally, who not only allowed me to expand upon my career to incorporate some information into my own lectures and workshops, but also continue to be incredibly supportive and enthusiastic about making gains in understanding and treating this condition, and personally supportive in my current situation.
In April 2009, the CRPS spread to the right calf and caused more pain, muscle spasms, and difficulty walking at times due to the dystonia (awkward and painful position of a limb), but specific nerve blocks and flexibility at work were very helpful.
In November 2009, a flu shot re-triggered the CRPS in the left arm, but a nerve block helped. Then, an awful nerve block from a different doctor in December resulted in huge changes professionally and personally. Instead of injecting into the stellate ganglion area, the injection was into the brachial plexus, hitting a nerve root and spreading the CRPS to the left side from the head to the throat, to the chest, back of neck, shoulder, entire arm and hand. At times, just air blowing is extremely painful.
I went back to the first doctor to receive stellate ganglion blocks in the correct location, but they only helped temporarily. I traveled to Chicago to see if an intensive rehabilitation program could help me get back to remission, but I was turned down because the muscles spasms and dystonia were too rampant to engage in physical therapy. So, I am awaiting another treatment that will hopefully provide some relief so that I can get back to my work, activities I was doing, and continue my goals.
I am always learning and with your help and contribution to RSDSA, we can have more conferences, and put more heads together in unraveling the mysteries of this complex disorder, providing more treatments.
Thank you to all those who have been through thick and thin with me. As stated from an interview with Dr. Apkarian in RSDSA's most recent newsletter, "Patients must keep trying things until they find what works to decrease their suffering and the pain... It's not good enough to say, "I'm stuck with this and can't do anything about it."
For those of you who want to better understand the movement components (specifically dystonia) of CRPS, follow the link below.
http://www.rsdsa.org/2/library/article_archive/pop/Oaklander_Neurology_2004.pdf
Donating through this website is simple, fast and totally secure, but you may also send a check made out to RSDSA.
Many thanks for your support! If you wish to donate to ongoing international conferences, please contact me at designsbydaf@yahoo.com or (914) 708-9229, and I can personally arrange to meet with you along with the executive director of RSDSA.
Sincerely,
Danielle Freudenheim