"Just pull yourself up by your bootstraps!" " It can't be that bad!" "You don't look sick to me!" "You're just imagining it!" "Just don't think about it, IT'S ALL IN YOUR HEAD!"
These are some of the comments that many RSD sufferers have come to loathe. The only common experience in suffering from RSD seems to be an uncommon lack of understanding about the disease and its potentially devastating effects. Many times, it seems as if our society simply cannot accept that a "simple pain" can be so all-consuming. Some even question whether the pain is real at all. There is no doubt that RSD is a physical disease. It usually develops as a complication of a minor injury or operation. There is real anatomical damage. It responds, in its early stages at least, to pharmacological and physical treatment. Examination of a limb affected by RSD leaves only one conclusion - this disease is physical - every bit as physical as heart pain from angina or the breathing difficulties of asthma.
But many physical diseases are impacted by emotion. Angina sufferers get pain under stress. Heart attacks are most common on a Monday morning when the victim is driving to work, especially if there is low job satisfaction. Some forms of asthma are triggered by emotional stress, and can be physically life-threatening. The association between stress and symptoms is widely recognized in many diseases. Many physicians have adopted methods that address the patient's reaction to stress along with their physical needs. For example, programs helping asthma sufferers deal with stress without developing bronchospasm have existed for decades. Dean Ornish's program for cardiac rehabilitation emphasizes meditation and stress reduction together with good nutrition and proper exercise.
Just because a physical disease is affected by stress does not mean it is a "mental" problem. It does however, suggest additional directions for treatment, and for some, even a way to complete recovery.
In RSD, these emotional aspects are especially important since the sympathetic nervous system, which is responsible for maintaining the pain of RSD, also regulates emotions. This is why many RSD patients find symptoms worsen with emotional upset - psychological stress aggravates an already-stressed sympathetic system, and may be one reason RSD is so misunderstood. If a person has more physical symptoms when stressed, people may think that the root of the problem is "really" psychological. Since living in chronic pain is itself highly stressful, many RSD patients find themselves in a vicious cycle - the stress of RSD makes the symptoms worse which, in turn, increases the stress! For this reason, emotional support from family, support groups and others is particularly important while treating RSD. In our work at The Pain Institute, we have seen that the intense and incapacitating physical symptoms of RSD, can, for many patients, be diminished significantly with supportive, stress-management psychotherapy. In addition to stress reduction, many people can learn to use psychological techniques to actually control sympathetic activity.
Using psychological techniques to treat physical problems is not new. For example, some people with high blood pressure can use relaxation and visualization techniques to control their disease. Recent studies have also shown that immune response, hormone production and a host of other sympathetic-related functions can be positively controlled using psychological techniques. These recent advances promise exciting treatment options for RSD.
The staff of The Pain Institute have been working since 1989 to integrate specific psychological therapies with conventional medicine, physical therapy and advanced neuromuscular retraining to directly control the symptoms of RSD. Using these techniques, many of our patients with established and apparently intractable disease have achieved long-term remission.
For many RSD patients, the suggestion of psychotherapy seems to validate the statement: "it's all in your head." Our hope at The Pain Institute is that more RSD patients will be able to benefit from an integrated treatment program that meets all their physical and psychological needs.
Since 1989, The Pain Institute doctors have treated RSD using hypnotherapy integrated with various medical and rehabilitative techniques. The initial results of this form of treatment were promising and provided the impetus to build the clinic. The following is a report of those first 30 cases treated by The Pain Institute doctors.
Thirty people with established RSD in stages 2 or 3 were treated using various medical, psychological and rehabilitative modalities. The primary intervention in all cases was specialized hypnotherapy, that included guided imagery, progressive relaxation, self hypnosis and other autogenic training. Patients able to benefit from this form of therapy demonstrated an ability to alter symptoms using psychological interventions. This capacity was demonstrated by 85% of all patients, although most were unaware they had this ability. The ability to alter symptoms using such techniques was greater in the RSD patients than in a general population.
Conventional treatment had failed to help all patients. After confirmation of their diagnoses, patients received training in symptom reduction using the various psychological techniques. They also received myofascial therapy to release associated trigger points, provide generalized muscle relaxation, improve range of movement in affected joints, and to retrain the sufferer to accept touch without pain.
Of the 30 patients, only four were unable to diminish symptoms using guided imagery or hypnotherapy. The remaining 26 were able to reduce symptoms. Four achieved complete symptom relief during the initial hypnotherapy session. Of the 30 patients, eighteen actively participated in therapy. These patients progressed to remission with the most common duration of treatment being three weeks. Eight patients, for various reasons, were unable to participate and withdrew from the program shortly after evaluation. Among these patients, the disease remained unchanged during the following six months. The patients who achieved remission experienced absence of pain, allodynia and vascular instability. In a six month follow up, only two relapsed. For the remainder, long-term remission resulted in a progressive reversal of tissue atrophy, including remineralization of bone in four cases who had subsequent studies.
In summary, over half of the RSD sufferers in our sample gained long-term remission using non-invasive modalities. Though these patients were considered refractory to conventional treatment, they commonly achieved remission in under three weeks.
Invasive therapy, including implantation of catheters for constant infusion of drugs and dorsal column stimulation is effective in providing partial relief of symptoms in many patients. When successful, they may be used for months or years to alleviate suffering. Unfortunately, these solutions are not always acceptable as they frequently fail to provide relief, carry risks from drug effects or infection, and are expensive. Treatment of physical disease using primarily psychological methods seems to be effective in many patients with RSD, at minimal expense and with minimal clinical risk. Our experience with these patients indicates that an evaluation of the patient's ability to use autogenic techniques should be a part of the standard evaluation of RSD. If the patient demonstrates the capacity to work in this way, autogenic techniques should be an integral, if not central part of the treatment plan. Our results suggest that the use of hypnotherapy is justified, not only after failure of invasive therapy, but as a potential first line of treatment.
Arthur is a massage therapist who developed RSD without apparent prior trauma. Like many patients, the diagnosis was not made for several months and he did not receive aggressive therapy early in the disease when conventional treatment is considered most effective. Treatment with protocols now used at The Pain Institute began about six years after his initial symptoms. (At this point, the disease usually is considered intractable.)
Symptoms began spontaneously, with a tiny spot of burning under the ball of his left foot while walking. The next day, the burning became intense so that he needed crutches. By the fifth day, burning had spread throughout his foot and into the calf and was severely aggravated by any use. He decided to rest it completely, but the next day his whole foot became swollen, very tender and painfully cold. His foot started to turn blue and any use continued to make the pain worse.
His doctor initially diagnosed sesamoiditis, but three weeks of complete rest and a course of naproxyn (Naprosyn) produced no improvement. Fed up, he determined to remain as functional as possible. He wired a board to the clutch pedal of his car so it could be hand operated and drove to work. There, he arranged chairs and pillows around his massage table for support and began doing massage while hopping around on his right foot. After several days of this, his right foot also began burning, eventually becoming almost as incapacitated as the left.
Two more months passed before RSD was finally confirmed by bone scan. Conventional medical therapy did not help, so he sought alternative treatment. Acupuncture initially provided substantial relief but soon became ineffective.
Over the next three years, Arthur consulted with fifteen different doctors and spent most of his time in a wheelchair. He used a number of anti-inflammatory medications and achieved a reduction in swelling from diclosenac (Voltaren), although the effects were short-lived and he developed an ulcer. Nifedipine (ProCardia) helped the burning but increased the swelling and tenderness. Symptoms stabilized and he improved without additional treatment for several months. He was able to walk without crutches for about two months, but a single mild exertion precipitated a relapse, leaving him again wheelchair bound.
Surgery was suggested at one point but a second medical opinion recommended strongly against it. He was left feeling hopeless and abandoned. Arthur sought out a nationally known expert in RSD and after three and a half weeks of intensive inpatient therapy, was able to walk again without crutches. About a year and a half later the symptoms again returned, suddenly and strongly, though he was able to confine the worst of them to the left foot, allowing him the use of crutches to get around.
Seven months later, after weak improvements and setbacks, Arthur began our integrated treatment program. He was initially skeptical but curious and later said that he needed to make a conscious effort to be open to the treatment options offered.
Specific guided imagery and visualization techniques were coupled with very careful therapeutic massage that respected his particular sensitivities. With this approach he discovered his way to eliminate symptoms. Over the next several months, he developed increased skills in symptom elimination. These techniques, coupled with massage therapy and strengthening exercises not possible before these treatments, greatly reduced the number and severity of flare-ups so that he was able to return to work as a massage therapist in a holistic health center.
In the nearly two years following treatment, Arthur has had several minor flare-ups but has easily and successfully treated them on his own. Otherwise, the burning pain is completely absent and the tenderness is only occasional and mild. He is steadily expanding his massage therapy practice and provides information, encouragement and support for others still suffering from RSD.
E-mail: dflemming@mem.po.com
Web Page: http://medhlp.netusa.net/www/piic.htm