LETTER TO THE FDA!
To petition the FDA, pharmaceutical companies and pain management physicians treating CRPS
We want the FDA to approve new CRPS treatments. The pharmaceutical companies to present drugs to the FDA for use in CRPS patients and physicians to share treatments that work for their patients. To invest some of the billions they make into helping us.
The people of CRPS or RSD
This petition was initiated by
Charles Mattocks, nephew of Regae legendary Bob Marley and Director of the new film “Trial By Fire” based on CRPS or RSD.
Complex Regional Pain Syndrome also known as CRPS, Reflex Sympathetic Dystrophy, RSD and Causalgia is listed as a rare diseases on NORD (National Organizations For Rare Disorders. From here forward it will be called CRPS. It is estimated that the number of people with CRPS is between 1.5 million to 5 million. We must be heard.
There are many in the healthcare community who do not know about CRPS, how to diagnose it and how to treat it. This needs to change. Early diagnosis is essential. In order for CRPS to be diagnosed early, healthcare professions need to learn more about it. Our goal with this petition is to educate the medical community, pharmaceutical companies and the general populations on what CRPS looks like and how to treat it.
CRPS is not a new disorder. This disease dates back to the Civil War. Soldiers who were wounded would complain of severe pain. They would describe it as if a fire were burning on their effected limb. Doctors recognized it as a disease but they didn’t know how to treat it or why it developed. Why is it that some solders got it while others with similar injuries did not? In that era doctors didn’t share theories or treatments with each other. Each one worked with their own patients trying different things to reduce their patients’ pain.
In many ways this has not changed with regards to CRPS and sharing of information. This needs to change. In recent years we have learned more about CRPS. We now know that this is not a peripheral nerve disease but a disease of the brain and central nervous system (CNS). We know that glia cells are activated with CRPS. We used to think that these glia cells were the glue within the nervous system. We now see that it is more. Glia make up 50% of the volume of or central nervous system (CNS). Glia are involved in the transmission of pain, CRPS pain.
This information on glia cells has not made it’s way to all of the physicians treating CRPS. They are still doing nerve blocks which do not help the centralized CRPS pain. In some cases these blocks can cause CRPS to spread. Pharmaceuticals also need to have this information in order to come up with new medications to reduce the glia cell activation. People with CRPS need to stay up to date with the latest research.
What are the symptoms of CRPS? Burning pain is the most common symptom. Some descriptions of how it feels are that it is like the worst sunburn that you can imagine one thousand fold. Other describe as if liter fluid were poured on them and lit by a match. Burning pain is associated with nerve pain. It is not exclusive to CRPS but it is the defining symptom.
The classic symptoms of CRPS also include: a change in color and temperature of the affected area, burning pain, changes in the nails, bones and muscles. While most people with RSD experience several of these symptoms, some experience them all. The affected area (an extremity, the back, the face, etc.) becomes a reddish purple in color. This color becomes more prominent when the person with CRPS has a flare of their symptoms. The temperature of the affected area is cooler than the other parts of the body. Temperature probes that are extremely sensitive to the slightest changes in temperature can be used to check the temperature of the affected area compared to the unaffected areas. If your right foot has CRPS, the temperature of different areas of that foot are taken and compared to the same areas of the unaffected foot. The affected foot will be cooler than the unaffected foot. Even without these instruments, you can feel the difference in temperature simply by touching to two feet. In addition to color and temperature changes in the skin; often the hair density changes as well.
Changes in the muscles and bone also occur. the muscles atrophy. The bones become more brittle. Many people experience dystonia. Dystonia is defined as a neurological movement disorder, in which sustained muscle contractions cause twisting, repetitive movements or abnormal postures. Pain causes lack of motion and lack of motion leads to atrophy. Dystonia further adds to immobility and if not treated can be devastating to the person with CRPS. Many are bedridden. The nails thicken and become brittle.
Despite what some physicians believe, CRPS does spread. It can affect internal organs, limbs and torso. Things like needle sticks, IVs, surgeries and other procedures can cause a spread of the CRPS.
Currently medications are used off label for CRPS. Some of them are:
Lyrica manufactured by Pfizer. Their website states that Lyrica is used for Fibromyalgia, Diabetic Neuropathy and pain related to spinal cord injury.
There is no mention of CRPS. Cymbalta manufactured by Eli Lily. This is an anti-depressant which is helpful for chronic patients like those with CRPS. Neurontin now generic gabapentin is used for neuralgia and epilepsy. Other drugs designed for epilepsy are used in the treatment of CRPS.Narcotics are used to calm the pain. There are many used manufactured by many companies.
Ketamine Infusions have been used to treat CRPS for over a decade. This is available in generic. Ariba is one of the manufactures. Ketamine acts to reboot the central nervous system.
These pharmaceutical companies need to be working to get their drugs approved by the FDA for CRPS. These companies need to be researching CRPS and what medications can reduce glia cell activation as the cause of CRPS pain. The FDA needs to approve medications brought before it for CRPS. A pharmaceutical company brought before it a product containing placental stem cells requesting a clinical trial. The FDA declined as this product was in clinical trails for other diseases. Now the pharmaceutical is no longer interested in perusing the clinical trial.
It is time for those of us with CRPS to be heard. Physicians need to learn the signs of CRPS to provide early diagnosis and treatment. Pharmaceutical companies need to work on better medications to treat CRPS. The FDA needs to approve clinical trials that offer those with CRPS treatment options. People with CRPS need to educate and advocate for themselves .
Join is in our fight for CRPS awareness.
Please sign this petition and share it.
We will be heard!
For more information of the film and CRPS visit http://trialbyfiremovie.com
Follow Link For Petitionin! https://twitter.com/momwithdiabetes/status/616711652365316096
Also don’t forget to check out “Trial By Fire” a Documentary that I’m proud to be a part of.