The RSD Riddle
The RSD Riddle
Few conditions elicit as much confusion as reflex sympathetic dystrophy.
Few painful conditions involving the hand and arm elicit as much controversy, confusion and misdiagnosis as reflex sympathetic dystrophy (RSD). A catch-all diagnosis, RSD has been used to describe the condition of many patients who may have actually experienced other chronic pain syndromes, such as sympathetically maintained pain or complex regional pain syndrome.1
To decrease the confusion, the International Society for the Study of Pain has proposed renaming this group of painful conditions to "complex regional pain syndrome."1
This name would de-emphasize the role of the sympathetic nervous system, while relying more heavily on a clinical assessment, according to the International Society for the Study of Pain.
A name change may be warranted. The term reflex sympathetic dystrophy implies situations that don't consistently exist with all RSD patients. The term "reflex," for instance, could be considered an inevitable response to injury.1 But RSD occurs in only about 5 percent of trauma, according to the RSD Syndrome Association of America. Likewise, the term "sympathetic" implies that the sympathetic nervous system causes the pain.1 If that were simply the case, sympathetic blocks would alleviate pain. Unfortunately, they don't.
So what is RSD and what can be done for patients who have it? The RSD Syndrome Association of America defines it as a multisymptom, multisystem syndrome that usually affects one or more extremities. Although RSD was clearly described in the literature more than 125 years ago by a group of physicians, it still remains poorly understood, unrecognized and overused as a diagnosis. RSD can involve nerves, skin, muscle, blood vessels and bones; pain is the common denominator.
RSD can be produced by accidental injury, surgery or even an adverse condition resulting from treatment by a physician. Although trauma secondary to accidental injury is the most common etiology of RSD, it can occur less frequently with certain diseases, such as myocardial infarction.
Oddly, there doesn't appear to be any correlation between the severity of the injury and the incidence and severity of RSD. As a matter of fact, many cases of RSD are produced from relatively minor trauma, and it's most frequently diagnosed in women.
Because RSD can produce a variety of fluctuating symptoms, RSD can be extremely difficult to diagnose. At a lecture, Denise Claiborne, MS, OTR, CHT, described the four cardinal symptoms of the condition.2 These symptoms are pain, which is out of proportion to the injury; swelling, which is the first physical sign; stiffness, which is profoundly worse than expected; and discoloration, which initially may present as redness over the dorsal MP and IP joints. The hand also may appear pale or gray. All four of these symptoms must exist for an RSD diagnosis. Secondary signs and symptoms include osseous demineralization, sudomotor changes, temperature changes and trophic changes.
Three stages characterize RSD, each marked by progressive changes in bones, joints, ligaments and muscles.
Stage I. Patients in stage I typically have the most pronounced pain, which is described as "burning" and localized to the injury site. A progressive lack of active range of motion may exist, and hyperasthesia is present. Patients may sweat and have cool extremities as vasomotor changes occur. Edema, pitting and nonpitting may exist over the dorsum of the affected extremity. Around the 5th week, patients may develop osteoporosis. Skin changes, such as atrophy, dryness, scaling and a shiny appearance, as well as hair growth on the extremities, and nail changes also may occur. Discoloration, usually pale and gray, is typical. This stage usually lasts three months.3
Stage II. Patients in stage II continue to experience profound pain, especially during active and passive range of motion. They present with a brawny edema, which is difficult to decrease. They also experience increased stiffness. The extremity may be red and hot, with glossy, shiny skin. Spotty demineralization characterizes the carpal bones. There may be diminished hair growth to the point of scarcity, and the nails may be very dry and brittle. Muscles may diminish to the point of atrophy. This stage lasts three to nine months.3
Stage III. By stage III, the patient's pain severity has peaked. But it's still painfully present and occurs with active range of motion. Periarticular swelling occurs, which probably adds to the decreased active range of motion and complaints of stiffness. The extremity has a pale, dry, cool, glossy appearance, and digit pencil pointing may be present. Osteoporosis is profound, diffuse and presents quite a challenge to treat. Although stage III typically lasts for nine months to two years, it may continue indefinitely.3
Treating RSD requires a thorough evaluation, paying particular attention to quantifying pain via a body diagram/visual analog scale. Because the stages of RSD vary, you must customize treatment for each patient; what works for one person at one particular stage may not work for another. Don't use physical means that will produce pain, however.
Likewise, we must recognize the emotional and psychological aspects of the disease as well as the physical components. As difficult as RSD is for health professionals to understand, it's even more difficult for patients, their families and friends.
The daily fluctuation of symptoms can add to the misunderstanding, and the lack of compassion, from friends and family. To that end, observe patients daily for signs of depression and adjust their treatment plans accordingly.
By doing so, you'll recognize any changes in their pain, motivation and physical symptoms. Nonverbal cuing, such as massaging the hand and forearm, may be indicative of increased pain and/or swelling, even though patients report feeling "the same as before." Because they're in constant pain, these patients may feel like "chronic complainers" and just assume there's no use complaining because it's not going to make a difference.
While recognizing patients' psychological needs is important, treating them with physical and/or occupational therapy is crucial. Although patients may resist, keep joints moving and implement stress loading as soon as possible. Stress loading "loads" or "stresses" the involved tissues to effect change in the sympathetic nervous system. Two techniques for doing this are scrubbing and carrying.
With scrubbing, patients hold a scrub brush with the affected hand and scrubs, back and forth, while positioned on the floor on their hands and knees. Patients should begin by scrubbing for three minutes, three times a day. They should increase their scrubbing endurance and the number of times they perform this per day to tolerance. The scrubbing provides a stress loading on the joints, muscles and tendons and increases circulation to the affected area.
With carrying, patients hold any object (a pail, purse, briefcase) in the affected hands with the arm in extension. They're instructed to carry the object throughout the day whenever they're standing or walking. They should begin with an object weighing between 1 and 5 pounds and increase as tolerated.
With carrying, the muscles and tendons lengthen and circulation increases. It provides a distraction at the joint. Scrubbing and carrying help patients use the affected extremity, which they typically avoid. If patients use the affected extremity, stiffness, edema and pain will decrease. Incorporate stress loading into the home and clinic programs. A stress load record sheet can help patients monitor progress.
Pain alleviation techniques also can offer patients some reprieve and include the following modalities:
TENS. This modality will provide an alternative sensation to the pain, usually one that's preferable to pain. This may allow patients to use the affected extremity more, which will help decrease stiffness, pain and edema.
Superficial heat and ultrasound. These modalities can serve as vasodilators, which can increase circulation locally and decrease pain. Ultrasound also can reduce edema.
Vibration. This will help increase circulation locally and can reduce pain because it massages the areas over the muscles to encourage increased active motion.
Contrast baths. These baths can increase circulation locally, as well as alleviate and reduce edema by encouraging vasodilation and vasoconstriction.
To reduce edema, instruct patients to keep the extremity elevated when possible and to perform AROM exercises in elevation to all arm joints with low reps (about five to 10 reps.) Retrograde massage in elevation and possibly intermittent compression with compression gloves and wraps also can help reduce edema.
Address joint stiffness with a gentle, structured, activity-directed AROM exercise program, which includes cone stacking, supination arches, pegboards and gentle putty exercises. All of these activities can decrease the emphasis of "exercising" while having the patient perform the movement patterns you want to accomplish.
The exercises should be performed for three minutes every 30 minutes of the day, with longer exercise periods three times daily. A static night splint may be used to place the extremity in a safe, functional position at night. The splint should not replace active exercise, however.
When hypersensitivity exists, incorporate desensitization techniques, which should be designed for the clinic and home. For the home, the patient can use a mini vibrator for 45 minutes at a time, twice daily.
The vibrator helps desensitize the hypersensitive area by providing pleasant stimuli to it. Retrograde massage, which should be performed frequently throughout the day, also will assist with desensitization. If a fluidotherapy machine is available, the patient can place the extremity in the fluidotherapy, without turning the machine on, to squeeze a soft sponge or simply rake the particles.
Along with therapy, encourage activities of daily living that force patients to use the affected extremity. Projects requiring sanding are excellent since they incorporate stress loading, AROM, and spontaneous use of the affected extremity. An end product, such as refinishing a piece of furniture, may serve as additional motivation.
For those who don't do woodworking, pre-fabricated projects, such as the ones you'd purchase at a craft store, are perfect. (Insurance companies easily reimburse these "craft kits" when I explained what we're doing with them. They're the best way to get the stress loading these patients need.)
RSD is an extremely challenging condition for even the most experienced therapist. Early recognition is key, as is delving deeply into the arsenal of treatment options for pain management, edema reduction, stiffness and patient motivation.
1. Manning, D. C. (2000). Reflex sympathetic dystrophy, sympathetically maintained pain and complex regional pain syndrome: Diagnoses of inclusion, exclusion or confusion? Journal of Hand Therapy, 13, 260-268.
2. Claiborne, D. (1997, May). Proceedings from the Michigan Hand Rehab Center Conference for Rehab Specialists. Southfield, MI.
3. Letcavage, N. (2000). Feeling the burn. Advance for Physical Therapists and Physical Therapy Assistants, 11(23), 41-42.
Karen Williams, OTR, is a free-lance writer and an independent consultant of rehabilitation and management services. She can be reached at (734) 462-2812 or by e-mail at firstname.lastname@example.org