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.
Also Known As Complex Regional Pain Syndrome (CRPS)
- Pain medication plan - may use narcotics, steroids, and antidepressants and certain drugs to control Restless Leg Syndrome
- Physical therapy
- Warm water therapy exercises
- 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)
- 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.
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.
Seeing that Christy was not accepting this, he ordered another round of oral steroids for the inflammation and decided to cast Christy's foot to immobilize it for a while. Her hand presented little or no problems, she said. She was told to return six weeks later to have the cast removed. In the meantime, he told her to stay off her feet as much as possible and to continue using the crutches only if she needed to get up. He refused to give her more Darvon and instead gave her a prescription for Motrin, a less potent pain medication.
Every day, Christy complained about the cast, the pain, not sleeping. Six weeks later when the cast was removed by a new doctor, Christy told him she had so much pain she couldn't stand it. She had tingling in her legs, and at the same time they burned or were in spasm. She had dizzy spells and fatigue which might have been a side effect of her medications. He told her mother that he could find no reason the child should have so much pain. He wrote a referral for physical therapy for four weeks. The only pain medication she had was Motrin, and all was well - until the refills ran out.
She begged her mother for help so Mrs. W. began taking Christy to a different Accident Ward. The visits were almost monthly looking to find relief for her daughter's pain. Christy's mother told each doctor she couldn't find anyone who could treat her daughter's pain and she was at her wit's end. Physical therapy didn't work, was there anything he could do? Each one would give a single prescription for a month's supply for a different narcotic with no refills. The medication rarely lasted more than two to three weeks. Then her mother would begin the cycle again going to a new Accident Ward. This led to Christy having multiple prescriptions for pain being filled at several different pharmacies.
In 1973, one attending doctor called the head of neurology for a consult. He gave Christy a cortisone injection. He gave Mrs W. his business card and said if this injection relieved her pain, to make an appointment with his office.
Christy felt almost instant relief from the injection. She had finally found someone to help her.
The new neurologist put Christy through a battery of tests to rule out the most obvious neurological diseases. Now at age 13, Christy was too young to be considered for Multiple Sclerosis, Guillain Barre Syndrome, various forms of Arthritis and other neurological disorders because the current criteria stated the average age of diagnosis was over 40.
Puzzled, her physical exam and pain assessment showed she truly had pain. Having no diagnosis to work from, the doctor advised her to cut down her salt intake to help reduce the swelling. He admitted her to the hospital and performed a nerve block followed by a pain management program that unfortunately continued her escalating use of narcotics. But Christy was finally comfortable for the first time since her injury.
Case Two: November 2008
Julie T., age 47, worked full time as a customer service representative at a center city insurance company by day, and part time on weekends as a waitress during the dinner shift at a busy upscale restaurant in Michigan. She needed the incomes from both jobs to meet her bills and to make payments on a surprise second mortgage on her home that she learned about after her ex-husband left her for a younger woman. Her medical benefits and 401K plan were benefits from her day job. Her weekend waitress job provided no benefits except good tips.
Julie was proud of having good health so she could work both jobs. Her waitress job was a joy; she was a cracker-jack server who kept her customers well tended, their coffee cups topped off and always available for their needs. She did well on tips but hated that she had to give over a portion to Ralph, a young lazy bus boy who sat out back smoking more than he worked. Because he was the boss's nephew, she had to do it.
On a particular Sunday night, the dinner crowd was heavy and Ralph was way behind in keeping her tables bussed, which was causing delays to seat new customers. Whenever Julie had two tables together that needed bussing, she dumped all the dirty dishes on one table so she could clean up the other so she would have one clean table for customers to be seated. The other waitress did the same; they were used to fending for themselves.
As Julie was laying new place settings on the cleaned table, Ralph squeezed between her and the next table so he could bus the dirty dishes. In the process, he bumped into her heel real hard with a wheel of the bus cart. It hurt and Julie held back from sniping at him. She was thankful she didn't have a trayful of food in her arms when he banged into her. She rubbed her heel, checked her shoe and stocking, saw nothing amiss and went back to work. She completed her shift about two hours later and told the other waitress that she would see her the following weekend.
On the drive home, she developed a headache and assumed it was from the blinding headlights of cars from the opposite direction. Aiming toward the exit ramp of the interstate, Julie suddenly veered off toward the shoulder of the road, slumped over and went unconscious.
A trucker who was behind her on the exit ramp pulled over and secured her rolling vehicle, tried to wake her up and then called 911 on his cell. Within minutes, the paramedics arrived. Julie came around but her speech was slurred when she asked what had happened to her.
The paramedics put two and two together when they heard her slurred speech and saw the droop on one side of her face. After calling it in to the ER home base, the paramedics were given permission to immediately administer TPA - a "clot-buster" - a drug to restore blood flow to the brain in patients who were suspected of having a stroke. On the way to the hospital, she was trying to convey to the paramedics that she wanted someone to contact her daughter in New Jersey, but it came out unintelligible.
Two hours later, after a complete workup in the ER, it was confirmed that Julie had suffered a CVA, a cerebral vascular accident (a stroke in layman terms), usually the result of a blood clot. Treatment was begun immediately, and two weeks later Julie was transferred to an inpatient rehabilitation center for extensive physical, speech and occupational therapy. Besides left arm paralysis, she had pain, swelling in her arms and legs, confusion, and balance and motor coordination deficits. She was getting nutrition through a feeding tube because her swallowing function had been compromised by the stroke. Her neurologist told Julie's daughter, Barbara, that she had a long rehabilitation ahead of her.
Barbara stayed in Michigan for three weeks but had to return to her teaching job in New Jersey. She kept in touch on the phone and with Skype, promising to return on her summer vacation. Julie T. spent the next six months trying to recover her once excellent health. Her center city job where she had her medical benefits had paid for her care up to the end of her inpatient rehab. She then received a letter that the benefits had been exhausted.
Upon discharge from inpatient facility, her doctors wanted her to continue outpatient physical therapy but with no health benefits and no money to pay for it, she didn't see how it was possible. Her daughter said it was time for her to apply for Social Security Disability, convincing her that she was entitled because she had paid into it during all those years of working.
In June 2009, Julie reluctantly applied for Social Security Disability at the age of 48. She qualified for a special medical insurance under Social Security now that she was disabled.
Talking to her daughter on Skype one day, Julie told her she expected her time on Social Security Disability to be short term because she wanted to go back to work when she got well. Barbara sensed that her mother was in denial about the severity of her disability, a fact that her doctors had totally ignored up to this point. Barbara called Julie's doctor to ask for a psychiatric consult.
For the first time in her life, Julie found herself sitting in front of a psychiatrist. The only therapist she had ever seen was a physical therapist at the rehab. That therapist had been very cursory because his patients were short term then they went home or to a long term care facility. It wasn't his job to dig deeper into any patient's history.
Julie admitted to her new psychiatrist that she was depressed, but who wouldn't be, if they were in her shoes. She told the psychiatrist she thought all the medications were adding to her depression and fatigue.
Julie was upset about the stigma of actually being on Social Security Disability, because she had been in good health up until her stroke. She always expected to work until retirement age so she could collect good retirement checks.
In her psychiatrist sessions, Julie learned that she was really mad that this had happened to her, that she was dependent on certain medications to get through her day and that people sometimes treated her like she was crazy, especially when she described her levels of pain all these months after recovery. The doctor told her that she shouldn't still be having pain, but he still renewed her prescriptions.
She told her psychiatrist that she used her optimism about returning to work as something to look forward to, instead of giving in to what everyone said - that her life would never be the same as before.
Soon she realized if it weren't for Social Security Disability benefits, she wouldn't have been able to afford all the treatment and medications she needed.
As soon as her insurance application was approved, Julie began an outpatient physical therapy program. There were some days she was able to go to her program and other days she couldn't get out of bed to be ready for the van to pick her up to take her to the PT facility. She routinely used a TENS unit to cut down on her use of pain medications, which she has tolerated to a point.
At doctor appointments, she repeatedly complained that she was exhausted and still experienced pain in her foot which now had traveled up past her hip. Her doctor, thinking the exercise program might have been too rigorous for her, altered her exercise plan by adding heated water therapy exercises, and increased the dosage of her pain medication.
One doctor said her ongoing complaints were probably side effects of medications. To this point, no physician investigated the underlying reason for her pain.
When Barbara returned to Michigan that summer to visit her mother, she saw not a woman recovering from stroke, but rather a woman ravaged in pain. Julie broke down and told her that her medical professionals thought she was lying about the pain, but they still kept increasing the dosages of her pain prescriptions.
Barbara took her to a pain management specialist who ordered a Fentanyl patch to use in addition to her pain medication. He then referred Julie to other specialists to get to the root of her problem.
When the specialists finished their tests and met several weeks later, they determined that Julie indeed had a stroke but the team thought the blood clot came from the injury to her heel from the bus cart. Her pain and her condition now had a new name - Reflex Sympathetic Dystrophy - RSD.
Update on 3/14/2014: RSD is also known as Complex Regional Pain Syndrome (CRPS)
Since 1972, Christy continued her oral and IV pain medications. She sporadically attended physical therapy and counselling sessions, and endured trigger point injections and nerve blocks. She was wheelchair-dependent within five years from her injury, on Social Security Disability and still living with a lot of pain even with taking so many pain meds. She never married, never finished her education and stopped looking for a diagnosis for her pain.
In 1986, Christy's physical therapist referred her to yet another neurologist who was conducting studies for a new pain syndrome called RSD -Reflex Sympathetic Dystrophy. The only reason she went was because the study promised pain medication, a treatment plan and a small monetary compensation. She was accepted for the study. Within six months, Christy had a definitive diagnosis of RSD.
She continued with physical therapy and eliminated almost all salt and processed foods from her diet. Her pain management plan now has a steady supply of pain medication using a pain pump which controls her pain so she can get up, get dressed, and function each day.
If Christy's schoolyard accident had happened twenty years later, say in the 1990s, her treatment plan and quality of life would have turned out much differently.
Today in 2012, Julie is 51 years old. After extensive speech therapy, pain management, warm water exercises and physical therapy, she is able to work part time as a customer service representative at her former center city insurance company. She is still allowed to collect Social Security Disability as long as her earnings do not exceed the limit in the state of Michigan.
As she continues to keep busy but not overdo, she has decreased her dependency on narcotic pain medication by trading in her TENS unit and replacing it with a Dynatron unit in addition to her daily use of NSAIDS, which she tolerates well.
With the brutal Michigan winters, occasionally she will ask for a nerve block or trigger point injections which are part of her ever-changing pain management regimen but for the most part, she is living with RSD the best way she can.
In Julie's case, modern medicine managed to save her life when she had a stroke, but overlooked the possible indications of RSD, which can happen in patients who have had a stroke or heart attack. The injury to her heel produced a blood clot that most likely caused her stroke. Her specialist speculated that if Julie didn't have a stroke, she would probably be still dealing with RSD because of her heel injury.
Since no two people experience RSD in the same way, the treatment for RSD is amended for each patient.
This is the plan that worked for Julie.
Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome
RSD was not even a blip on the medical radar back in 1972. It wasn't until the mid-1980s that RSD appeared in medical journals.
In addition to all of the treatments and resources mentioned in this article, a good support group or counselor specializing in pain disorders can help most people while other patients may feel that just being around others who are also in pain makes them feel worse.
Each person has to do what works for them. Anyone who deals with pain on a daily basis should avoid conversations talking about "pain" because it often makes pain feel worse.
Whether it truly is, or just seems to be, can only be determined by the person who is dealing with that pain - the RSD patient.
RSD - Complex Regional Pain Syndrome
RSD (CRPS) in hands
About the following video
Watch the video, then come back to this note. You may want to watch the video a second time to catch the things I am pointing out to you here.
I chose this video for several reasons.
I wanted you to see how a pain assessment is conducted before and after a pain medication infusion, in this case, ketamine.
Notice how dramatic the changes were and to listen toward the end of the video that "heated water exercise therapy" is the recommended ongoing treatment.
It is important to know that ketamine is not considered a first line of treatment. Usually several other drugs are offered for pain management before deciding on this course. This patient's medication was Fetanel, a very strong opiate, which was not taking care of her pain. Tapering down off the drug was also discussed.
Lastly, certain terms the doctor used in his dialogue are indigenous to the southern part of the USA. When he says "hitch hike back to Texas" he is instructing the patient to 'curl her toes backward.' As you watch the video, other sayings are self-explanatory.
- how quickly this disease progressed from the time of her lumbar puncture in June 2011 to October 2011 (you'll hear the doctor and mother discuss the date references)
- how high doses of ketamine were used for pain management, yet the patient still retained very high cognitive function - i.e. awareness of surroundings, able to answer 1 and 2 step questions, indicating the patient's very high threshold for pain medications
- how after the ketamine treatment, the areas of sensitivity (marked on the patient's back) were greatly reduced.
- how the patient was instructed to pace herself with heated water exercise therapy using the "hangover" guide.
Ketamine Treatment For RSD (CRPS) Spreading to Other Body Regions
American RSD Hope - USA
Pain Scale - Faces of Pain
See more resources below
While not many patients would agree, pain is a very important diagnostic tool. Without pain, there are very few ways to diagnose the other symptoms that a patient is experiencing in order to provide a good treatment plan.
Pain is measured using numbers from one to ten, with number ten being the worse pain imaginable. This is called a "Pain Scale."
When a patient says that today his pain is a "number 5," he is comparing "his number 5" with pain he has felt on other days, which was either worse or better than the "number 5" pain that he is feeling today.
If his pain on the next day is 100 times worse than his "number 5" pain of yesterday, he may say today his "pain level is a number 10." A patient may even say "it's a 10 plus 10 plus 10" in an effort to get his point across to the doctor that his pain is way off the charts today, and in no way compares to his "number 5" of the day before.
Any patient who tells his doctor that his pain is "way off the charts" every single time he sees him, is not giving his doctor good information. The patient who only once in a while uses that as a measurement of his pain does provide good information, but only for that one day. If the patient habitually reports his pain is "way off the charts," either the patient is not getting better on the present treatment plan, or his reporting skills cannot be relied upon.
There is no way to measure pain that is rated as "way off the charts." There is no point of comparison if every pain rating is so exaggerated.
There is a reason the doctor asks you to rate your pain. Doctors use pain scales to see if the amount of prescribed medication (as opposed to how much the patient is actually taking) is effective or not. The dosage may be increased or decreased as needed.
Some patients do actually get better and don't require the same dosage or the same number of pills for each prescription refill. Decreasing dosage and frequency is usually a good sign that either a patient is recovering or that other pain management techniques are working with medication.
Addictive personalities who decrease usage with one doctor may mean the patient is getting his drugs elsewhere. This way he appears convincing to at least medication provider that he is getting better so on a future visit when the patient asks for an higher dosage (in number of pills or milligrams) for new pain episodes, the doctor will likely write the prescription because the patient history indicated less usage in the past. It is a trick that addicts use to make sure they always have a steady supply of doctors to give them a prescription when other sources dry up.
If the patient says he has run out of medication and his pain scale doesn't jive with how much medication he was prescribed (or how much he says he takes), the doctor knows there is a problem either with the patient's rating of his pain or he may have access to other sources to get medication.
Doctors measure pain in a patient by what a patient tells them they are feeling - which includes using the pain scale - but also in conjunction with physical examination and by observing a patient's reaction.
On physical exam, the doctor will purposely stimulate certain trigger points to cause pain. It is not a process that patients who are in pain look forward to because it will either set their pain off for the day if it has been relatively calm up to that point, or it intensifies their pain so they ask for immediate relief.
Yes, the physician is purposely triggering pain, but what he is also doing is gauging how long the patient takes to react to the pain.
If the patient reacts immediately to a stimulus the doctor initiated, it helps him to know if the patient has exaggerated his pain scale number or if he is holding back and not given the pain a high enough number.
Patients may under-report pain because they don't want the "hypochondriac" look that some doctors unintentionally show on their faces.
By holding back pain, the patient is doing himself more harm than good.
It is a fact that a physician cannot adequately measure your pain - no one knows the pain you are going through. But in order to provide appropriate treatment, the physician and his team need to have a true evaluation so that the patient doesn't become over-medicated or under-medicated.
Under-medicating a patient's pain can lead to needing more medication sooner to keep the pain under control.
Over-medicating pain can lead to addiction and abuse of pain medication, so that the pain is no longer measurable because it is masked by so much medication.
Pain from addiction can be confused with the pain that the patient had when they originally started the treatment, because pain from addiction is another kind of pain entirely. Withdrawal is painful but is primarily psychological. Pain from injury is also painful, but is primarily physical.
Since the late 1990s, doctors are requiring patients to sign a pain management agreement, primarily because patients are obtaining multiple prescriptions from multiple health care providers.
One of the components of the agreement is to conduct routine and random blood and urine tests. The patient never knows when a random test will be requested, but will always know when a routine test is expected.
By doing this, it has helped many patients not only keep a good supply of medication on hand but it has helped many physicians and their teams to better manage a patient's pain treatment plan.
Please refer to the Resource Lists for links in the US and abroad.
Updated Resource List
Added June 2020
It has been a few years since the date of this article. Since RSD/CRPS treatments have changed considerably, here are some newer resources:
Published April 2012
© 2014 awordlover
awordlover (author) on March 26, 2014:
#ologsinquito - That's the idea -awordlover wanted to get the message out. If more people heard of it, they'd be sure to ask their doctor if this is what could be wrong with them. It is a very painful condition that many people are suffering with and many more are searching for the diagnosis so they can be treated for it. Thank you for reading and commenting.
ologsinquito from USA on March 26, 2014:
I've never heard of this either, but you did a really good job explaining this condition.
awordlover (author) on March 17, 2014:
#FlourishAnyway, pain is not easy no matter how much medication you take or where it is located. It just hurts! lol Thank you for your comment.
FlourishAnyway from USA on March 17, 2014:
I've never heard of this and learned a lot. I have definitely experienced prolonged periods of excruciating pain and empathize because of it.
awordlover (author) on March 17, 2014:
#DDE thank you for reading this hub, please share it with your friends. It affects many people who often feel that no one else even knows about this disease that affects 50% of people who have suffered an injury or debilitating illness.
This link explains statistics better:
It is hard for doctors to make the connection when there are so many other diseases and illness they think of first. Only with more awareness will physicians begin to automatically associate RSD as a side effect of other illnesses. Thank you for your comment.
Devika Primić from Dubrovnik, Croatia on March 17, 2014:
Reflex Sympathetic Dystrophy sounds a painful experience and I don't know anyone who has this problem. You ave created an important health information. So much I did not know before reading this hub thank you