Chances are you’ve heard of Parkinson’s. Funding for this disease numbers around a hundred million each year. What if I told you there is a disease that affects about the same amount of individuals every year, and rates a on a pain scale higher than childbirth or cancer pain? And what if I told you the average patient sees up to twelve doctors before they get the proper diagnosis. This is if they are lucky enough not to commit suicide before someone can offer them relief.
The disease is Complex Regional Pain Syndrome, or CRPS. It is previously known as RSD (Reflex Sympathetic Dystrophy) It is estimated that there are 16,000 new cases each year in California alone. But this is just a guesstimate as it is so often misdiagnosed.
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In the interest of disclosure, I have CRPS of the spine. A rare type of CRPS which has resulted in the loss of mobility, a year in a wheelchair, and what has resulted in a life of disability. Mine was instigated by a concussion when the electric tailgate of my car came down into my skull as I was standing up. Multiple surgeries and dozens of procedures later, it wasn’t until I was properly diagnosed that my true healing could begin.
The process of diagnosis is traumatizing, as many of its symptoms mimic Multiple Sclerosis or the dreaded Lou Gherig’s Disease. There is no one test for CRPS. It is diagnosed through a series of markers noted by your doctor who must be familiar with the disease.
About Complex Regional Pain Syndrome
CRPS is a disease of the nervous system that occurs due to a trauma or surgery. It could be as simple as a spider bite. According to the National Institute of Neurological Disorders, Complex regional pain syndrome (CRPS) is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), usually after an injury or trauma to that limb.
CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area.
Diagnosis is made by seeing an expert in CRPS who will take your history and perform a physical exam.
According to the Mayo Clinic the symptoms of Complex Regional Pain Syndrome are as follows:
- Continuous burning or throbbing pain, usually in your arm, leg, hand or foot
- Sensitivity to touch or cold
- Swelling of the painful area
- Changes in skin temperature — at times your skin may be sweaty; at other times it may be cold
- Changes in skin color, which can range from white and mottled to red or blue
- Changes in skin texture, which may become tender, thin or shiny in the affected area
- Changes in hair and nail growth
- Joint stiffness, swelling and damage
- Muscle spasms, weakness and loss (atrophy)
- Decreased ability to move the affected body part
Symptoms may change over time and vary from person to person. Most commonly, pain, swelling, redness, noticeable changes in temperature and hypersensitivity (particularly to cold and touch) occur first. Over time, the affected limb can become cold and pale and undergo skin and nail changes as well as muscle spasms and tightening. Once these changes occur, the condition is often irreversible.
Complex regional pain syndrome occasionally may spread from its source to elsewhere in your body, such as the opposite limb. The pain may be worsened by emotional stress.
In some people, signs and symptoms of complex regional pain syndrome go away on their own. In others, signs and symptoms may persist for months to years. Treatment is likely to be most effective when started early in the course of the illness.
How to treat Complex Regional Pain Syndrome
How does one manage CRPS? The key is beginning treatment ASAP. The focus will be on restoring function first, then pain relief will follow. This will result in “functional pain”. The other key to managing CRPS, is treatment through a Multi-disciplinary approach. A group of doctors in various practices of pain psychology, physical therapy, pain management, and neuro-feedback that all work together on your case.
This combined with ketamine infusions has proven extremely successful. My treatment has included all of the above and I am slowly regaining the use of my legs, and am no longer bed ridden.
One thing to understand is that this disease cannot be controlled by opioids alone. It will be a losing battle resulting in addiction, or even prescription overdose, as the pain levels are so high, the opioids will not manage it and in some cases may actually worsen the pain by activating certain cells responsible for exasperating the disease.
Ketamine is not officially approved for treatment of CRPS. However its results have been monumental in the treatment of CRPS. It is the safest anesthetic available. The downside is hallucinations and raising of blood pressure, but both of these are controlled by medications administered during the infusion.
85% of patients see improvement after ketamine infusions, but it’s important to emphasize that these infusions alone are not a cure or treatment by itself. They must be incorporated into a treatment plan that includes the Multi-disciplinary approach under the guidance of an expert in CRPS/RSD.
The ketamine infusions I had were in a medical facility, four hours a day, five days a week for two weeks. I then entered a four week Multi-disciplinary program through Dr. Joshua Prager at UCLA, one of the leaders in this field. After two months I developed a “flare” and underwent ketamine booster infusions. Within days my system quieted and pain levels reduced by 30-40%. I also gained additional mobility in my left leg which has dragged for over a year.
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There are other treatment options as well. Many people have a sympathetic nerve block. This blocks the nerves to the arms and legs. The problem with this is it is risky and pain relief is short.
I had a spinal cord stimulator implanted, or an SCS. This has electrodes (leads) that go up my spinal cord and are connected to a small generator in my flank that I operate with a remote control. It generates a tingling, vibrating sensation that replaces the severe pain signals.
The risk is a slippage of the leads that can result in needing additional surgery. This is my current complication and I will be having corrective surgery in the next month. 25-50% of patients with an SCS will eventually need additional surgery. It has however greatly improved my quality of life.
Medicinally, neuropathic pain medicines are used such as Gabapentin, Neurontin, but these take weeks to work. Lyrica is popular and works faster, but each of these have side effects.
The bottom line though, is no medicine or treatment will be effective if physical therapy and movement aren’t employed. Joint pain is a huge problem with this disease which causes muscles to weaken and joints to stiffen resulting in immobility which increases the pain of CRPS/RSD.
Ultimately, the pain becomes a disease by itself and is NOT a symptom. It’s essential also to balance physical therapy so that you never push yourself beyond your pain threshold. This changes daily, so one has to constantly listen to their body when in treatment.
I am learning as I go. The above is simply information I have absorbed over months of research and living this disease that has taken over my life. If there is one wish I have, it is that more physicians are aware of the symptoms, diagnosis, and treatment of CRPS. So many of us feel dismissed and misunderstood by the medical community while fighting the battle of our life. I have had four children, and have never experienced the pain levels I have had during my health challenge with CRPS.
It is a disease. It needs attention please share with everyone you know. You never know who might be suffering in silence with this excruciating disease.
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Source: Santa Clarita News