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.
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From Providers

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 ​​  

From Patients

"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
The key thing to this disease is that you have to try to keep moving!!! 
If you don't try to maintain your range of motion, you WILL lose it! Your muscles will begin to atrophy (lose muscle) and your foot can stay "stuck" how it is. I go for short walks with my husband...even though it hurts like heck to do it! ​
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!!! ​
Neridronic Acid
Just wanted to tell everyone with CRPS that there is a nationwide test study being done on a drug called Neridronic Acid. It is a 4 day 2 hr infusion. I just finished it last Thursday and I am 100% pain free. I have had CRPS for 3 years after breaking my hand and wrist. I had it in both hands, arms, legs, feet, my head, and back. There is hope out there for all of us. 
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. ​​
"CRPS Survival Guide" has has gotten me to 98% pain free and down to 3 pills of medications per day!!!! I can LIVE, LOVE, RUN, JUMP, WORK and TRAVEL again! I would have given ANYTHING to have this document when I started my dark journey into CRPS all those years ago. I had doctors charge me $800 for WORTHLESS visits and garbage information. 
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 >
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!  
The referred doctor this patient is referencing is Ron Eslinger in Clinton, TN 
"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 >
Medication Alternative
I just switched from Neurontin/ Gabapentin to Zonegran. The Gaba (3600mg) was causing me to do weird things, say weird things, talk about things I couldn't remember, want to eat to stop the mind fog, and things like that, but otherwise it helped my burning pain. 

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...
  • EXCESSIVE SWEATING:  Do not use the disposable bed pads to protect the mattress, sheets and pillows throughout the night. Some patients have 2-3 event through the course of a night. It is best to use washable bed pads with a soft cloth side (cotton or flannel) and a thin waterproof side. The washable versions are far more affordable in the long run and are much more comfortable to sleep on, as well as no noise associated with them that the disposables elicit.
  • Keep a decorative laundry basket by your bed to toss wet clothing and/or bed pads into. 
  • Setting your change(s) of clothing out before you go to bed helps reduce the stress of trying to find dry options in the middle of the night.
  • Only sleep in clothing that is easy for you to change out of and into. Throw out everything else. now. Why struggle?
  • Keep a luxurious towel by your bed at night so when you need to wipe down, it is in comfort and softness. 
  • Adding aroma therapy after these events when you are returning to sleep might be appropriate.
  • Keep a small bowl of water and a face towel near by to help refreash yourself following a heated sweat event / meltdown. 

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
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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.)
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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!