Interesting article in NYTimes about Regional Pain Syndrome

Discussion in 'Fibromyalgia Main Forum' started by kholmes, May 30, 2006.

  1. kholmes

    kholmes New Member

    Here's the first part of an article in today's (May 30) New York Times about Regional Pain Syndrome. You can subscribe to the e-mail edition of the NY Times for free. The part about doctors originally believing this was psychosomatic sure sounded familiar. Here is the article:

    It was supposed to be a typical ballet class. Cynthia Toussaint, then a senior dance major at the University of California, Irvine, engaged in her usual stretching routine: she raised her left leg to the barre and slowly bent her upper body down to her right knee.

    For a moment, she delighted in the long stretch. But as she returned to an upright position, she felt a sudden pop in her hamstring. "It felt like a guitar string had been plucked and it had broken," said Ms. Toussaint, who is now 45.

    An intense burning sensation followed; it felt as if her leg had been doused in gasoline and set on fire, she said. The next day, the college athletics trainer determined that she had pulled her hamstring. But even years later, the pain would not subside. It migrated to her other leg, leaving her bedridden for nearly a decade, and overtook her vocal cords, leaving her temporarily mute.

    All the while, doctors puzzled over and even doubted her mysterious condition.

    Ms. Toussaint now knows that she is among an estimated one million Americans living with complex regional pain syndrome, a nerve disorder formerly known as reflex sympathetic dystrophy syndrome. For patients with the disorder, a trauma as mild as a fractured wrist or a twisted ankle can cause the nerves to misfire, so much so that intense pain messages are constantly sent to the brain.

    For the past 150 years, so little was known about complex regional pain syndrome that it was often diagnosed as psychosomatic. But doctors now believe that the condition complicates 1 of every 1,200 traumatic injuries. And desperate patients are turning to new, often unproven, drugs and treatments. "It is still quite a mysterious condition," said Dr. Scott M. Fishman, a pain management specialist at the University of California, Davis, and the author of "The War on Pain."

    "It raises doubts in the eyes of doctors and the people that are looking for hard lab evidence or good imaging confirmation," Dr. Fishman said. "With this condition, we simply don't have that."

    Baffling as it may be, the syndrome is not new to the medical literature. It was first documented by Dr. S. Weir Mitchell, a Civil War surgeon. But few physicians are familiar with it; the average patient sees 8 to 10 doctors before a diagnosis is made, according to a recent survey by American RSDHope, a support organization.

    Pain is the hallmark of the condition, which outranks cancer as the most painful disease on the McGill Pain Index. For some, the sensation remains in one place, most commonly one of the extremities. For others, it spreads throughout the body, making even a light touch or minor changes in temperature agonizing.

    For Ms. Toussaint, as for many other patients, the pain was life altering. When she tore her hamstring, she was on the verge of completing her bachelor's degree. She was also being considered for a part on the television series "Fame." But the injury left her in debilitating pain. She could no longer stand on her own or leave her house; riding in a car on the bumpy California roads was torture.

    Ms. Toussaint dropped out of school and fell into a deep depression, she said. It took 13 1/2 years for her disorder to be diagnosed. Dozens of doctors told her it was "all in her head"; one even suggested she suffered from stage fright.

    Without clear clues as to what induces the syndrome or who is particularly susceptible, doctors say that treating it is a challenge. Sympathetic nerve blocks can reduce the pain, and doctors say the relief often lasts longer than the anesthetic.

    More than two dozen drugs are also being used to treat the pain. But none of the medications, which range from acetaminophen and ibuprofen to morphine and methadone, have been approved by the Food and Drug Administration for this use.

    "The myth is that this condition isn't treatable, but the truth is that it responds to the same kinds of treatments that have been found effective for other neuropathic pain," said Dr. Anne Louise Oaklander, director of the nerve injury unit at Massachusetts General Hospital and an associate professor of neurology at Harvard.

    Dr. Russell K. Portenoy, chairman of the department of pain medicine and palliative care at Beth Israel Medical Center in New York, added that treatment was "a trial and error" process.

    Doctors tend to use the drugs that are most commonly prescribed for other conditions before the drugs that are less commonly used," he said. "But in many cases, doctors need to perform sequential trials to find out which drug or combination of drugs helps the most."

    Dr. Portenoy said he is a consultant for drug companies but not on work related to the syndrome or its treatment.

    Another treatment is to implant an electrical stimulator near the base of the spinal cord or the injured limb. The device sends low-level electrical signals to the spinal cord or to specific nerves and blocks pain signals from reaching the brain.

    Dr. Robert J. Schwartzman of the Drexel University College of Medicine in Philadelphia is skeptical of the electrical stimulators. Although he first began implanting them in patients in 1986, he no longer does. "Long term," he said, "stimulators don't work. From what I've seen, they wear out and then they stop working."

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  2. victoria

    victoria New Member

    he was a psychologist who also worked with chronic pain pts, many of whom were dx'd with RSD before he was... RSD causes depression, not the other way around, as there are actual physiological changes.

    For my husband, his salvation seems to be working out and working 'thru' the pain, something I cannot do with CFIDS/possible stealth infection... altho I have more fatigue & 'flu' type feelings and feeling brain dead resulting from trying to work out than any pain.

    There is a lot of commonality it seems tho between RSD and FM, not sure what the defining factor(s) would be to differentiate:

    Here is more info from the RSD organization at

    RSDS Symptoms
    FOUR Main Symptoms/Criteria
    There are FOUR Main Symptoms/Criteria for a diagnosis of RSDS:

    Constant chronic burning pain.
    Spasms-in blood vessels and muscles of the extremities
    Insomnia/Emotional Disturbance
    Not all four symptoms are required for a diagnosis but most patients do have at least three out of the four at any one time.

    The CONSTANT PAIN is described as burning pain as if a red hot poker were inserted into the affected area, also throbbing, aching stabbing, sharp, tingling, and/or crushing in the affected area (this is not always the site of the trauma). The affected area is usually hot or cold to the touch. The pain will be more severe than expected for the type of injury sustained.

    Allodynia is usually present as well (extreme sensitivity to touch). Something as simple as a slight touch, clothing, sheets, even a breeze across the skin on the affected area can cause an extreme amount of pain to the patient. Pain can also be increased by sounds and vibrations, especially sharp sudden sounds and deep vibrations.

    This makes it especially difficult on the spouses, children, and other family members also; as their softest touch can now cause pain instead of pleasure. If the patient has not been properly diagnosed yet and these sensations properly explained, these symptoms can cause extreme duress and confusion to all involved.

    The INFLAMMATION is not always present. It takes various forms, the skin may appear mottled, become easily bruised, have a shiny, dry, red, and tight look to it. An increase in sweating usually occurs as well.

    The SPASMS result in a feeling of coldness in the affected extremity as well as body fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back.

    The fourth part of this square is INSOMNIA and EMOTIONAL DISTURBANCE. RSD affects the limbic system of the brain. This causes many problems that might not initially be linked to a disease like RSD. Chief amoung them are Depression, Insomnia and short-term memory problems.

    RSD CAUSES Depression, NOT the other way around. For more on Depression see the Menu.

    RSD causes insomnia by not allowing the body to drift into REM, or rapid eye movement, sleep. This is the sleep that allows the body to use its own healing abilities. Without it, the patients pain cycle continues and becomes more entrenched. As the body cannot heal itself, it becomes harder to achieve that sleep which makes the pain worse and so the cycle continues.

    Many patients can feel they are losing their mind as their ability to remember things, short-term, greatly decreases. Things like, what someone told you an hour ago, what you had for lunch yesterday, whether you took your pils this morning, what you were just talking about etc. You are NOT losing your mind. Loss of short-term memory is part and parcel of RSD.

    Other signs of problems here would include the inability to think of, um, well, ah, hmm, just the right word. The patients ability to concentrate is also lessened while their level of irritability is increased. These problems get even worse as the sleep cycle continues.

    Do these symptoms sound familiar to you ? Do you also sometimes have an increase in your pain when your stress level is higher ? Or the noise level is higher ? Do you want to crawl into a hole by yourself and pull it in after you ? Does the simple rustling of a newspaper or the soft touch of your spouse send you through the ceiling in pain ?

    Do you sometimes have trouble finding a certain word? Do you sometimes completely lose track of what you are saying ? If these symptoms sound familiar, know this; you are NOT crazy and you are NOT losing your mind. You are also not alone, not anymore.


    Other Possible Symptoms
    Movement Disorders --- difficulty in beginning movement of the injured part or moving it in general.
    Increased Tone --- Muscle and skin tightness
    Increased Reflexes --- Tremors of the extremity and muscle spasms
    General Weakness --- Increased body fatigue, fever, rashes, sores, swelling also possible
    Color/Skin Changes --- Skin may turn shiny, red, dry and tightened; increased sweating, temperature.
    Nails/Hair --- On affected extremity they may grow at an increased rate, nails become grooved brittle.
    Bone Changes --- Softening of the bones, Osteoarthritis, Osteoporosis, joint stiffness/tenderness.
    Sleep Patterns --- Insomnia is often seen, also disrupted sleep pattern. Some Medications help this.
    Miscellaneous --- Dizziness, Tinnitus, Agitation, Irritability, Visual disturbances such as blurriness, dry eyes and others. Also, sounds/vibrations even strong winds can exacerbate the pain as well.
    The List can go on for other pain and discomfort that the patient feels and many can be attributed to the RSDS. But we can and will learn to cope with it. It is not, and will not, be easy; that is why a support system is so necessary for RSDS patients. This support system can take the form of your family, friends, a Support Group such as ours, and On-Line Support Group etc.

    RSDS may follow other conditions besides a fall or an accident; such as ... infections, radiation therapy, heat or electrical burns, heart diseases due to constriction of coronary arteries, surgery, and broken bones.

  3. valleyann

    valleyann New Member


    I was wondering if any of you know what kind of doctor I would go to for this? Rheummy?

  4. valleyann

    valleyann New Member

  5. valleyann

    valleyann New Member

    Thanks for the advice. I'll definitely check out that website.


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