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Mystery Diagnosis: Rsd - Reflex Sympathetic Dystrophy and Crps - Complex Regional Pain Syndrome

My articles are written from my perspective as a long time writer on HubPages, a retired healthcare professional and an educated patient.

Two different cases, same diagnosis

1972 - Christy initially doctored for pain due to a foot injury. Soon her doctors were treating only her pain, and her long ago foot injury was forgotten.

2008 - Julie had a stroke, completed an extensive rehabilitation program, but still had unexplained pain long after the stroke.

Two very different cases, same mystery diagnosis. Both patients were given the conventional treatment at that time, but each had very different outcomes.

Chart detailing from onset

Chart detailing from onset

Also Known As Complex Regional Pain Syndrome (CRPS)

Treatment

  • Pain medication plan - may use narcotics, steroids, and antidepressants and certain drugs to control Restless Leg Syndrome
  • Physical therapy
  • Warm water therapy exercises
  • Psychotherapy
  • Support groups for chronic pain and/or depression
  • Cortisone injections, nerve blocks
  • TENS unit or a Dynatron unit
  • Changes in diet (to exclude Gluten, processed foods)
  • Pain pump - morphine or other
  • Surgical options - neurectomy, sympathectomy

Reference: NIH - The National Institute of Health uses this fact sheet

Reflex Sympathetic Dystrophy (RSD)

Symptoms

  • Swelling, aching, pain in either or both arms, legs, back, neck, etc.
  • Sensitivity to touch
  • Affected area changes in skin temperature
  • Discoloration of affected area, i.e. redness, shiny, cyanosis, blotchy or pale
  • Stiffness of affected joint
  • Burning, stabbing pain
  • Muscle cramps
  • Restless legs or arms
  • Extremely hard to move affected body part (arm, leg, back, neck, etc.)

Case One: September 1972

It was a new school year and Christy W. was starting 7th grade. She was talking with two schoolmates, Anna and Mike, while leaning against the wrought iron fence in the schoolyard. Out of nowhere, a huge 8th grader named Bruce shoved Christy into the fence, so he could attack Mike, who had called him a name earlier that morning.

The shove caught Christy off-guard, her hip making contact with one of the rails in the fence, her ankle turned inward, then she crumbled hard to the ground landing on her hand. Trying to get up with Anna's help, sharp pain ripped down her right leg to the bottom of her foot. Anna helped Christy into the school building to go to the nurse's office.

The nurse thought she had sprained her ankle. Christy W. did not return to class and spent the rest of the afternoon with the nurse, while she waited for her mother to get done work to come pick her up from school. The nurse put some ice packs on the sore areas of her leg, foot and hand, then gave her one Tylenol, a new pain reliever that just came out and was being used in place of aspirin. She let Christy rest till her mother arrived at 4PM. By then her hip and her ankle were killing her and her fingers started to swell. Christy thought she might have broken something.

Mrs. W. got angry when she heard what happened and she told the nurse that she wanted the school principal to address this incident with the boy and his parents. She helped Christy to the car and left the school hoping the boy would be held accountable for his actions.

It was the last day Christy W would ever attend school.

By dinnertime, Christy was in so much pain and the swelling of her ankle and fingers had worsened, despite all the ice packs. Her mother took her to the Accident Ward of their community hospital. The doctor ordered X-rays of her ankle, hand and hip to rule out a fracture. In 1972, there were no MRI's or CT scans in their hospital. The radiologist read the X-rays 'wet' and said it showed no fractures.

The attending doctor said she probably had a sprain and instructed the nurse to wrap her hand and foot in elastic ACE bandages. He sent her home with crutches, a prescription for a few days of steroids for the inflammation and told her stay off her feet for a couple of days. He told Mrs. W to give her no more than two Tylenol as needed for pain every 8 hours and to make a follow-up appointment with her pediatrician.

Christy stayed home from school and set up camp on the couch in the living room with her foot propped up on a pillow, and settled in to watch TV, talk to her friends on the phone and be close to the kitchen for her snacks and soda.

Ice applied to her foot seemed to help but she soon complained about how cold it was, so Mrs W. resorted to using a heating pad which helped the pain for short periods but did nothing for the swelling. Mrs W.'s cure for everything was Epsom salts, but Christy said it only helped a little. When Christy went upstairs to go to the bathroom, it was very painful.

Christy couldn't sit at the table to eat her dinner, but while on the couch, she drank soda, ate Fritos, Cheese Puffs and Potato Chips. Her mother supposed it was better than eating nothing. She needed food in her stomach while taking steroids and pain medication. It seemed to Mrs. W. that even laying on the couch made Christy get worse. Whenever she woke up saying she was in terrible pain, her mother gave her more Tylenol.

Concerned that Christy would fall so far behind in schoolwork, Mrs. W called the school to ask for a tutor so her child would stay current with her lessons. When she asked about the boy who had hurt Christy, she was told that the boy said he was sorry.

Two days later, Mrs. W. took Christy back to the Accident Ward because the pain ws not getting better. Her foot had swelled to double its size and the Tylenol was not working.

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After asking a few questions, the doctor said all the chips, soda and junk food she was eating were full of salt. He said her swelling was due to fluid retention. This was not what Christy wanted to hear. By now, her foot hurt more than her hand and she wanted something for pain, but not Tylenol.

To appease the child and her mother, he ordered more X-rays which now showed a fracture of the fibula that had been missed on the previously 'wet' X-Ray reading. Christy thought they would set her broken bone, put her in a cast and give her something for pain.

Just as it is now, the standard practice in 1972 was to let fractures of the fibula heal on its own, give a prescription for a mild pain medication for the discomfort, and put the patient on crutches for up to 6 weeks.

Seeing no cast coming her way, Christy was furious. She was sent home with her foot wrapped in a new elastic bandage, given a prescription for a three day supply of the pain medication Darvon, a set of crutches and a note to stay home from school for the next week.

Two days later, Mrs. W. brought her daughter back to the Accident Ward. Christy ran out of Darvon and she complained of increased pain, burning, redness and swelling. She was gobbling down Tylenol like they were jelly beans and they weren't taking care of her pain.

The doctor suggested to Mrs. W. that alternative medicine like acupuncture might be worth looking into. Some people were having good success treating their pain. He was concerned that Christy might become dependent on Darvon if she were to continue, especially since her three day supply was gone in less than two days.