To: FDA, The United States House of Representatives, and The United States Senate
FDA Approval For Ketamine to Treat CRPS
Millions suffer 24/7 with a chronic pain syndrome called CRPS/RSD.
What the is heck RSD?
I am a nurse. I can honestly say that we were never taught anything about RSD/CRPS in nursing school. Let’s start with these initials. RSD stands for Reflex Sympathetic Dystrophy. It is also known as CRPS which stands for Complex Regional Pain Syndrome. It has also been known as causalgia. All of these names, for something that doctors and researchers don’t completely understand. What we do know is that it is a chronic pain condition where a simple injury causes pain that is totally out of proportion for that injury and lasts long after the injury should have healed.
The disease dates back to the Civil War. Soldiers who were wounded would complain of extreme pain. They would describe it as if a fire were burning on the affected limb. Doctors recognized it as a disease but they didn’t quite know how to treat it or why it developed in some soldiers and not others with the exact type of wound. In that era doctors didn’t share theories or treatments with each other, each one worked with their own patients trying different things to try to reduce their patient’s pain.
Today doctors and researchers still aren’t one hundred percent clear on what causes RSD to develop in one person and not in another with the same type of injury. Many physicians and nurses still do not know what RSD is so they do not know how to diagnose and treat RSD patients. Other physicians of misconceptions about RSD, such as it can not spread, it doesn’t cause widespread edema (swelling) and that the pain can not be debilitating. Many of us with RSD are told that the pain is in our heads and not real.
So what exactly is RSD? It is a chronic neurological syndrome that is characterized by a severe burning pain that is often described by patients as if someone poured lighter fluid on them and then lit it. They feel like they are on fire. There are pathological changes in the bone and the skin, such as bone loss, and shinny, hairless reddish purple skin. Many RSD patients have excessive sweating all of the time. The tissues of the effective area(s) swell. Most have an extreme sensitivity to touch (allodynia). Something as light as a breeze can cause excruciating pain. Clothing on the affecting area(s) can be painful. This last symptom can also cause people with RSD to pull away from the ones that they love. Touch is a sign of friendship and love. Many people can’t understand why you are constantly pushing them away and asking them not to touch you no matter how many times you explain why! Why? Because to someone with RSD, touch is extremely painful.
Anyone can get RSD. It is more prevalent in women than men and the number of pediatric cases is on the rise. One of the biggest challenges that the RSD patient face is the lack of proper understanding and education of pain in the medical community. The inability to get insurance companies to recognize and pay for a multidisciplinary treatment team. Finally, the loss of employment, social structure and family life are all struggles that the patient with RSD may be faced with. One of our biggest battles is that of getting treatments covered by health insurance and workman’s compensation insurance.
RSD is a malfunction of part of the nervous system that usually develops in response to a traumatic even such as an accident or medical procedure. A minor injury such as a sprain or a fall can also cause nerves to misfire sending constant pain signals to the brain.
RSD is broken down into two categories:
CRPS I (RSD)
The symptoms of type I include: The presence of an imitating event such as a fracture or sprain. Continuing pain including allodynia, which is pain from a normal stimulus such as the breeze from a ceiling fan, or hyperalgesia which an increased sense of pain. The pain is disproportionate to that associated with the injury. There is edema (swelling), changes in skin blood flow (skin color changes, skin temperature changes ) and excessive sweating in the region of pain.
The diagnosis of CRPS I (RSD) is one of exclusion. It is based on the existence of conditions that would otherwise account for the degree of pain and dysfunction.
CRPS II (Causalgia):
This is the presence of constant pain, allodynia (pain resulting from normal stimulus) or hyperalgesia (an increased sense of pain) after an identifiable nerve injury. Evidence of edema, and skin changes. This diagnosis is also one of exclusion based on the existence of conditions that would otherwise account for the degree of pain and dysfunction.
Ketamine can reduce the pain of CRPS/RSD and in some people put them into remission
Why is this important?
There are millions who suffer 24/7 with CRPS. Studies done over the past 10 years show how much ketamine helps with chronic nerve pain. We want the FDA to change Ketamine to a schedule 3 drug and approve it's use for the treatment of CRPS.