CRPS / RSD: PATIENTS & PROVIDERS
Chronic Regional Pain Syndrom / Reflex Sympathetic Dystrophy
Many new articles in various papers and online are calling CRPS a "mystery illness". Odd, since CRPS / RSD has been around for many years. More is being learned about diagnosis and treatment options. CRPS / RSD is no laughing matter, this is a diagnosis changes your life from the onset, to every pain, burning sensation you have and grueling time that you have going through life.
This level of pain changes a person. It is often devastating to their livelihood, their family, outlook on life, loss of friends, loss of social life, and then there is the spiraling out of control pain! This is not a diagnosis that is to be taken lightly.
If your non-stop, unbearable pain has been diagnosed as CRPS-I, local study doctors need your help with a research study testing an investigational medication.
studycrpsnow.com They need men or women between 18 and 80 years old, who have been receiving treatment for CRPS-I for at least 30 days. Participants will be seen by a study doctor and receive all study-related medications at no cost. Call the toll free number to learn more about this study and to see if it’s right for you. 855.545.0407
"TRIAL BY FIRE" SHORT DOCUMENTARY
Charles’ mother, who is also the sister of the late Reggae legend Bob Marley, was diagnosed with CRPS/RSD years ago and he has seen the pain and the mismanagement of the condition first hand. Charles, who also lost his father in November, 2014, was moved to try and get his mother the needed help and also bring awareness to the condition that has brought pain to the lives of almost two million people around the world. Visit the site
There are stretching exercises that I do and I have a stationary bike that I use but put no resistance on the bike. Is there pain doing these things... absolutely! The pain though is worth it to me if I can keep my mobility!!! Stay positive and keep your faith!!! There are times when this will get you down and that's natural for all of us... Just don't STAY down!!!
Please look into this test study in your area.
RSD/CRPS involves many internal body systems such as GI, Cardio, Nervous, etc. This is due to CRPS's direct effect on the Autonomic, Sympathetic & Central nervous system. Every patient presents as a different case. What's really over-activated are the glial cells that make up 90% of the Central Nervous System. That's why any pharmacological agent working on the NMDA pathway is very effective for many people who are lucky enough to access high dose Ketamine.
I would be dead now had I followed the advice of my doctors -- even some of my CRPS doctors! To get my 65+ page roadmap out of hell, essential for every CRPS sufferer, for just $29.95, click HERE >
Watch a one hour video about his journey and with Dr. Ekbert Göhmann that has brought him to the point of writing "The Survival Guide." HERE >
"We spent time utilizing his expertise in hypnosis in pain management, bio-feedback, imagery, light/sound therapy, alpha/beta sound waves, etc... He even picked up on the fact that I was suffering from PTSD from everything that I had been through with my CRPS. None of my other doctors had picked up on that. Ron utilized the tools he had and taught me to use his tools to help myself. By the end of the 30+ hours of time with him and homework that I had done in my hotel room in the evenings... I came away with CD's of every session, the tools to keep my pain or as Ron says (my "Comfort Levels") down / or at a ZERO, the ability to put myself into hypnosis and my own light/sound therapy machine. I have to let every CRPS / RSD patient know that this was the first type of treatment that allowed me to get my pain levels down to ZERO! Plus, Ron, gave me the tools to keep them at a Zero."
For additional information on Sound & Light Therapy HERE >
Voices of Expericence
Excessive Sweating = Meltdown
Whether the responsibility is yours or that of your caregiver, this comes at a time when you least have the energy to deal with it! If the sweat events are both a day and night, even more challenging! TIPS from those in the know...
Make a Plan !
Extream Treatment & Progressive Therapies
Nerodronate: CPRS Treatment in Italy
Grunenthals’ recruitment for the neridronate trial started in early April.
To inquire about your participation or to determine whether a clinical trial site is nearby, visit http://www.studycrpsnow.com
The bisphosphonate class of drugs has been used overseas to treat CRPS for years. Querying PubMed for bisphosphonates for CPRS will reveal a small trove of published research (more than 20 papers) dating back to 2002. (PubMed is a great website to bookmark to search the latest scientific research. Again, this search engine indexes published research, which may not prove fully accurate after deeper scientific investigation.)
Currently, two other pharmaceutical corporations are submitting plans to the FDA for clinical trials that will evaluate therapies for a CRPS indication. It’s an exciting time for all individuals affected by CRPS. Stay tuned!