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7 Articles in Volume 4, Issue #5
A Case For Intractable Pain Centers: Part 1
Co-Existing Psychological Factors
Cold Lasers in Pain Management
Diagnosing Diffuse Aches and Pains
Occipital Nerve Block for Cervicogenic Headaches
Opioid Therapy in Chronic Non-cancer Pain Management
Reflex Sympathetic Dystrophy (RSD)

Reflex Sympathetic Dystrophy (RSD)

Also known as complex regional pain syndrome (CRPS), this progressive, debilitating illness can be managed to reduce symptoms and even, in some cases, achieve remission.

The following text, in its entirety, is excerpted from Positive Options for Reflex Sympathetic Dystrophy (RSD): Self-help and Treatment by this author and is reprinted with permission of Hunter House Publishing, Alameda, Ca.

Reflex sympathetic dystrophy is a progressive, neurological syndrome that is characterized by constant, severe, burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, discoloration of the skin, muscle spasms, and extreme sensitivity to touch. It is estimated that six to eight million Americans suffer from RSD and it is three times more common in women than in men. People between the ages of forty and sixty are at most risk. RSD can spread to the entire affected limb and all parts of the body. The joints can become stiff, limiting movement and causing muscle atrophy and further pain and dysfunction. RSD can eventually become intractable if it becomes centralized in the nervous system. If left untreated, those afflicted will endure a lifetime of severe, unrelenting pain, sleep derivation, disability, unemployment, financial ruin, isolation by friends and family, and depression that may lead to thoughts of suicide.

RSD is triggered by a trauma to the body, usually an injury to an arm or a leg. In roughly 65% of cases, a mere soft tissue injury such as a sprained ankle has progressed into the condition, but fractures, surgeries, injections, infections, paralysis and repetitive strain injuries can also precipitate RSD. RSD may even occur without any apparent injury and the resulting pain can be aggravated by the slightest physical or emotional stimulation or sensory stimuli (e.g., a gentle breeze, a soft touch, vibrations , etc).

Awareness of the condition in both the general and medical population is very low, and there is no single test for RSD. While progress can be made if treatment (including pharmacology and physical therapy) is begun early, a delay in diagnosis will lose this window of opportunity and result in permanent disability and pain. For the millions that are afflicted with the aftermath of RSD, the author's own struggle with this debilitating disease provides valuable insight in managing symptoms.

My Personal Ordeal

As a writer and healthcare communication professional, I descended into RSD via a winding road of medical misdiagnoses and incorrect physical therapy from what originally started as computer-related repetitive strain injuries to my hands. Over the course of a year, I became an invalid with RSD in both arms and was forced to abandon my career, move back home with my parents, and rely on a network of friends and family to shower me and brush my teeth.

Unable to concentrate, cook, clean, comb my hair, tie my shoes, or drive a car, I spent many sleepless, frantic nights struggling to maintain composure as burning pain laid siege to my arms. Showering was excruciating due to the burning sensation on my skin, while a gentle human touch on my hands brought agonizing pain. RSD took my independence and replaced it with pain, anxiety, fear, frustration, alienation, desperation, and immense loss. By day, I scoured every available resource for information on RSD and was terrified by the overwhelming clinical information and abundant horror stories that I found in place of encouragement. By night, I surprised myself by contemplating hand amputations or suicide just to end the pain.

To regain control over my terrified self, I started avoiding sources of information on RSD that reminded me negatively of my mysterious disease and instead reached elsewhere for ammunition with which to combat moment-to-moment despair. I learned that one of the most important things I could do was stay calm at all costs. I received extensive support throughout this process — something that so few patients find amidst the blur of constant pain, compounding loss, and labyrinthine debates with doctors and insurance carriers. Fortunately for me, medical experts, family, and close friends carried me through the experience with encouragement and faith.

My neurologist and occupational therapist took the time to explain the crucial interaction in RSD among mind, body, and spirit. Acupuncture and other complementary therapies greatly aided my healing and pain management. I explored my own means of distracting and expanding my mind, and dug deep enough to find the sense of humor and playful spirit that I had all but forgotten. I had to look at myself as someone forever changed, and (here's the hard part) I had to learn to make peace with my new life paradigm — as I've come to know that definitive treatment for RSD remains on the horizon. As much as I wanted to repeat "RSD has destroyed my life" over and over again, I realized that I would be the one suffering from recycled anger and grief brought on by my own focus on the negative.

The journey of regaining lost function still continues, but the constant burning siege has stopped and is in remission. With drug therapy, acupuncture, occupational therapy, and lifestyle modifications, I'm in control of my body once again. As my nervous system attempts to stabilize further, I learn new clues every day about keeping a close, yet forgiving, dialogue with my body. In Table 1, I've listed ten ways I've found effective in helping me re-energize and refocus my being as I continue to reclaim my life from RSD.

1O Quick Pick-Me-Ups, Calmer-Downers, and Visualizations
When your spirit is beaten down and you need to reclaim this necessary balance of self, the following exercises can help in releasing tense energy, replenishing your spirit, comforting your soul and rethinking yourself. Take a deep breath and try one of these refreshers to remove your pain from the foreground. Then, start over until the next hurdle in your day.
  1. Release energy: Fill the sink with lukewarm water, stick your face in it, and blow bubbles. Scream, sigh out, and release anxiety and frustration by exhausting yourself through your blowing. Or pick a song that speaks to your mood and sway gently along with it. Sing at the top of your lungs or breathe in profoundly, using your diaphragm to resonate deeply and release extra energy as you hum. Sometimes just one song can provide the time you need to release negative emotions.
  2. Replenish your spirit: Drink a glass of water, visualizing its purifying effect as it hydrates your tense body. Pay attention to its clarity as it spills over your tongue and travels down your throat, imagining its nourishing liquid washing away toxins. Visualize it cooling your inflamed pain and loosening your stiff joints, tendons, and muscles. Concentrate on how necessary water is to optimizing your health and how therapeutic your gift of water to your body is at this time.
  3. Laugh! Yes, it's hard to do with so much pain, but just one belly-laugh can tighten and release your stomach muscles, draining tension. Flip on Comedy Central or a comedy tape for a half-hour to help. Stand-up comedy, with its rapid-fire jokes, offers instant gratification and helps to drown out negative thoughts immediately.
  4. Try deep breathing techniques, Lie on your back-, breathe in for four counts, hold your breath for four counts, and breathe out for four counts. Focus on filling your stomach with breath, and watch your stomach rise up and down as you count. Visualize positive oxygen and health entering your body as you inhale, and the release of negative energy, stale air, and the day's pains as you exhale in a smooth, controlled rhythm. Continue for 20 breaths.
  5. Comfort Your Soul: Talk to the body parts that are hurting you. Express your frustrations-and your hopes. It may seem silly at first, but being able to direct these thoughts and feelings to where they most matter might make you feel better at times than telling a loved one. Kiss that body part or hug it against you, imagine blood flowing to the area and increasing circulation as you build this connection.
  6. Try heat: Warm up a heating pad, lie on your back, and place it over your chest. Concentrate on filling your chest with nurturing warmth and feeling grounded or secured by the extra weight. When heat permeates the chest, it can offer a deep sense of calm and sleepiness. The comfort of this position can lead you to a catnap or help you get to sleep at night.
  7. Use old rituals: Old rituals and songs from your childhood may soothe you and stir parts of yourself you have not seen for awhile. Go to a religious service that is familiar to you-even if you are not currently affiliated. Singing other childhood jingles or cheers serves the same purpose. Involve your family and friends in singing sessions and tap this source of comforting familiarity and connection.
  8. Connect with nature: Walk or wheel yourself into the sun for a short spell, even if you didn't feel like it. Focus on the warmth and light and contemplate yourself being closer to these natural forces. Feel the sun warming you through to your inner core, nourishing it, and reawakening your positive energy and earnestness for life. Watch for a tree blowing in the wind and imagine how you too can bend gracefully amid the challenges blowing your way.
  9. Rethink yourself. Marvel at your body's ability to learn things in a new way. If your dominant hand hurts, train your other hand to write and complete other tasks. Dial the phone with your toes if you need. Introduce yourself to the new, different you, and throw away "brain chatter" about how you used to do things. If all the words in your head are linked to trigger thoughts of pain and loss, step outside of your brain temporarily by learning a new language-a foreign tongue offers refuge in a completely new and distant world of unintelligible sounds. Whether it is a language you find beautiful, or one of your own ancestors, educational books and tapes are available for virtually any language you desire. To nurture positive thinking, repeat words of encouragement of yourself until they ring in your ears. Likewise, you don't have to dismiss or toss away all worries and fears as much as just find a limited space for them. Outwit the negative voice in your mind and put it in its place! Giving a name to the voice can help you make the distinction between yourself and your negative thoughts. This way, you can still entertain negative feelings from time to time-but you can keep them separate from your core positive self and get on with your day.
  10. Distract yourself: Since RSD involves perpetuation of the pain cycle, consider it a medical necessity to try anything that engages your heart, mind, or funny bone and pulls them elsewhere-out of pain's grasp. Try to focus on the opportunity to learn new diversions and hold off on mourning the loss of your favorite hobbies. Distraction from your pains, both physical and emotional, is a crucial form of therapy itself. Try comedy, a poignant film or book, world music, arts and crafts, nature hiking, bird-watching, photography, volunteering, board games, mental exercises, or wordplays.

Table 1. Ten steps for coping with RSD (reprinted with permission of Hunter House Publishers, Alameda, CA)

Conclusion

My own personal experience with RSD has shown that patients suffering from this disease should be encouraged to actively participate in managing their pain and strive to regain control over their lives. While apathy and depression are a natural byproduct of constant pain, patients experiencing these feelings must be taught coping strategies to adapt to a new life paradigm that includes the specter of pain.

Maximum benefit — and sometimes, even remission of RSD — can be achieved through multiple, complementary and holistic therapies, including: skilled physical therapy, acupuncture, biofeedback, massage, Yoga, Tai Chi, Qi Gong, cranio-sacral therapy, Feldenkrais, meditation, occupational therapy and cognitive-behavioral exercises that can help change mental and emotional reactions to physical pain as well as maintain balance and a positive spirit.

For more information and support, patients—as well as medical professionals and caregivers—can log on to www.rsds.org, www.forgrace.org, www.rsdhope.org, www. aware-rsd.com, and www.rsdinfo.com.

Last updated on: December 11, 2012
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