Tons of Tools for Relentless Pain

Welcome to my RSD/CRPS resources. I'm Nickie Coby, and I wrote a book about my life with Complex Regional Pain Syndrome (Also known as Reflex Sympathetic Dystrophy). In that book, I tell stories of many aspects of my own life with this condition as well as my life with blindness and how they intersect. My goal for this site is to provide anyone in pain, dealing with RSD, or even family and friends with the best resources possible this will be a companion to my book, but if you don't have the book yet, you will still benefit from these resources.

CRPS has many officially recognized symptoms and some symptoms that are not recognized
officially, but that many CRPS patients describe. The symptom that all physicians
who treat this condition recognize though is intense burning pain. Patients frequently
experience color changes, excessive swelling (edema), and changes in hair and nail
growth of the affected limb. Patients complain of struggling with movement of the
effected limb, excessive sweating and muscle spasms. Researchers have found movement
disorders and "neglect like" symptoms, in which the limb with CRPS feels foreign
to the patient (Galer and Jensen, 1999). These symptoms are generally used to diagnose
CRPS, but again, the largest symptom is pain "disproportionate to the inciting trauma".
Despite these objective signs and symptoms, there is no test or lab work which signifies
that a patient has CRPS. Doctors generally use their own clinical experience to diagnose
CRPS, but often use certain procedures to aid in diagnosis. These procedures include
infra-red thermograph to measure the temperature of the affected limb as compared
to the unaffected limb, special infusions of a chemical to block sympathetic nerve
impulses, and sympathetic nerve blocks, which also serve as a treatment for some
patients and will be described later (Harden, 2005).
To fully understand CRPS, it is important to understand pain as it is the most definitive
symptom of CRPS. According to the International Association of the Study of Pain,
pain is "An unpleasant sensory or emotional experience which we primarily associate
with tissue damage or describe in terms of damage, or both" (QTD in. Moskowitz and
Lang, 29). For example, the sensation of a burn to the hand after touching a stove
is considered pain because it is both unpleasant and is associated with damage to
tissue like skin. A commonly understood explanation of acute pain is that pain helps
the body protect itself. For example, pain causes a person to remove a hand from
a hot stove or avoid walking on a broken leg. The nerve fibers sense the damage and
the information passes through the dorsal horn of the spinal column. The brain receives
the information, and reacts. There are many possible responses to pain, depending
upon the injury. An inflammatory response is likely in the case of an injury. It
is thought that an exaggerated inflammatory response may play a role in CRPS.
An inflammatory response is caused by the sympathetic nervous system, and is one
reason for the previous, but still common understanding of CRPS as an over-firing
of the sympathetic nervous system. The sympathetic nervous system is commonly referred
to as the "fight or flight" nervous system. It is involved in controlling more automatic
processes in the body such as circulation, breathing and digestion. It reacts in
response to stressful situations, of which pain is certainly one. The sympathetic
nervous system, having received the impulse warning of pain causes swelling to protect
the injured area (Moskowitz and Lang, 21-22).
Although there is not currently a widely accepted laboratory test that can objectively
identify CRPS, that day may be coming soon. Scientists have found several biological
markers that are present in CRPS. Researchers have found DNA changes in the cells
of the spinal cords of CRPS patients (Juris, 11). There is also evidence that a portion
of the brain shrinks when the CRPS patient is experiencing significant pain, however
that change appears to be reversible (Galer, 2006 P 4).
It is precisely these biological and neurological changes that distinguish CRPS from
other chronic pain conditions. Additionally, a condition like back pain remains local
and does not usually spread. There may be nerve damage, but the changes are generally
limited to the site of original injury, although they can cause pain radiating into
a limb. CRPS shows changes in the entire nervous system, such as those associated
with a sympathetic response. Research also shows a loss of small nerve fibers in
skin biopsies from the affected limbs of CRPS patients (Groopman, 2005.)
Because of the response of the nervous system in CRPS, many doctors felt that CRPS
was necessarily degenerative. They believed that CRPS had three or four stages, and
that all patients progressed linearly through those stages. The first stage is acute
CRPS, stage two is the dystrophic stage, stage three is the atrophic stage and stage
four involves the inner organs and treatment with implanted devices is strongly considered
(RSD Hope, 2007).
The hypothesis of stages, as with many hypotheses in CRPS, has not been shown to
be effective clinically. This hypothesis was created when Complex Regional Pain Syndrome
type I was called Reflex Sympathetic Dystrophy.
Doctors commonly find with CRPS that the condition responds very differently between
patients who would normally be considered similar in other health classifications.
Because of these differences in response to therapies, doctors treat CRPS with numerous
medications, procedures and therapies. The Reflex Sympathetic Dystrophy Syndrome
Association publishes treatment guidelines which suggest pharmacological management,
physical and occupational therapy, psychological interventions and other complementary
therapies. The focus of these guidelines is decreasing pain and increasing function
(Harden, 2006).
Pharmaceutical interventions are not curative, but do help many patients to recover
function. Pain is relieved through analgesics and adjuvant analgesics, meaning medications
that are not always used to treat pain. Patients first try to treat their pain with
over-the-counter pain medications such as Acetaminophen (Tylenol) or anti-inflammatory
such as Ibuprofen. Anti-inflammatory medications relieve pain, but also relieve swelling.
While these medications can be enough to control the pain for some patients, not
all patients receive enough relief from these medications. Doctors generally try
to choose medications that will relieve as much of the pain as possible, and aid
a patient in functioning more effectively with the least amount of side effects.
For example, a tricyclic antidepressant treats nerve pain by increasing Serotonin
and Nor epinephrine, but also cause drowsiness and can be helpful for a patient who
struggles to sleep because of the pain. An anti-seizure medication like Gabapenten
(Neurontin) or Pregabalin (Lyrica) can calm nerve pain, and aid in reducing allodynia
or sensitivity to touch and other stimuli which would not normally be painful. Some
patients also find relief with a lidocaine patch. Lidocaine is a local anesthetic,
which decreases nerve activity and can produce relief.
However, relieving inflammation, calming excited nerves, relieving depression and
insomnia, sleeplessness are not always enough to relieve pain enough to help the
patient function. Doctors sometimes need to add an opioid pain reliever such as Vicodin
or Oxicontin. In this case, doctors try to find a medication which will help the
patient's pain, but also avoid side effects such as drowsiness and constipation.
When treating a patient with opioids, doctors also must avoid addiction to the medication,
although this is generally considered a rare problem when opioids are used to treat
pain. Some doctors use contracts which outline patient's and physician's responsibilities
(Harden, 2005).
Another tool physicians commonly use is a nerve block. In essence, a nerve block
involves injecting medication, usually a local anesthetic, to block nerve transmissions.
The most common nerve block used for both the diagnosis and treatment of sympathetically
mediated, originating from the sympathetic nervous system, pain in CRPS is a sympathetic
nerve block. This is usually done in the neck or in the lumbar spine. The sympathetic
nervous system lies on the sides of the spine, so the physician guides a long needle
near the spine to block sympathetic activity. A patient can confirm that she or he
has received a sympathetic block by the increase in temperature which occurs after
the block. This is because the veins dilate and allow more blood to the extremities
(Harden, 2005). Though these blocks seem to be less common, I have personally received
an ankle block, named because it blocks nerves in the ankle which stops sensation
and pain in the foot and an epidural injection which numbs the lower half of the
body. There are very few studies on the efficacy of these two injections.
One new treatment which holds significant promise is the ketamine infusion. Ketamine
is an anesthetic which blocks chemicals which excite the nervous system. While studies
are limited, this particular medication has assisted 85% of patients at one treatment
center in becoming more active or reducing their daily medications (Getson, 2005).
Although in depth description of these treatments is beyond the scope of this paper,
it is important to know that psychological therapies such as biofeedback, relaxation
and coping skills are often used with CRPS patients. Physicians also prescribe physical
therapy to aid the patient in strengthening and desensitizing the limb (Harden, 2005).