Mystery Diagnosis: RSD - Reflex Sympathetic Dystrophy and CRPS - Complex Regional Pain Syndrome
Written by Anne DiGeorge
© awordlover, April 2012
Two different cases, same diagnosis
1972 -Christy initially doctored for pain due to a foot injury. Soon doctors were treating only her pain, her long ago foot injury forgotten.
2008 -Julie had a stroke, completed extensive rehabilitation but still had unexplained pain, long after the stroke.
Two very different cases, same mystery diagnosis. Both were given the conventional treatment at that time. Each had very different outcomes.
Also Known As Complex Regional Pain Syndrome (CRPS)
Treatment (Reference: National Institute of Health)
- Pain medication plan which can include 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 (exclude Gluten, processed foods)
- Pain pump - morphine or other
- Surgical options - neurectomy, sympathectomy
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 Two: November 2008
Julie T., age 47, worked a full time job as a customer service representative at a center city insurance company by day and on weekends she worked the dinner shift part time at a busy upscale restaurant in Michigan. She needed both incomes to meet her bills and to pay back a second mortgage home lend her ex-husband dumped on her with when he left her for a younger woman. Her medical benefits and 401K plan were through her day job; she had no benefits through her waitress job except good tips.
Julie prided herself on having good health to be able to work both jobs. Her weekend job was a joy; she was a cracker jack waitress who kept her customers well tended, their coffee cups topped off and her tables clean, ready for new customers. She did well on tips but hated she had to give over a portion to Ralph, a young lazy bus boy who sat out back smoking more than he worked, but because he was the boss's nephew, she had to let it ride.
On a Sunday night, the dinner crowd was heavy and Ralph was way behind in keeping her tables bussed, which was holding her up 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. At least that way 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 adjacent table so he could get to the table with all the dirty dishes. In the process, he managed to clip her heel real hard with a wheel of the bus cart. It smarted and Julie held back from sniping at him. She was thankful she didn't have a trayful of food in her arms. 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.
She drove the half hour ride to her home, developed a headache on the way and assumed it was from the blinding headlights of cars coming 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 pulled over and secured her vehicle, tried to wake her up and then called 911 on his cell. Within minutes, the first responder paramedics arrived. Julie came around but her speech was slurred as she tried to ask what had happened to her.
The paramedics put two and two together when they heard her slurred speech and saw the droop to 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 (in layman terms known as a stroke), 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, edema in the arms and legs, confusion, balance and motor coordination deficits. She was getting nutrition by way of a feeding tube because her swallowing had been compromised by the stroke. Her neurologist told Julie's daughter, Barbara, that she had a long haul 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 rehab, her doctors wanted her to continue outpatient physical therapy but with no benefits or 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, since she had paid into it all those years of working.
In June 2009, Julie reluctantly applied for Social Security Disability at age 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 saying her mother needed someone to talk to, and asked 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 seen till now was while in rehab. That therapist had been very cursory because he only saw patients to transition to living in a rehab and never delved deeper into any patient's history or disability.
Julie admitted to her new psychiatrist that she was depressed, but who wouldn't be, having been in her shoes. She told the psychiatrist she wouldn't doubt that 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 a halfway decent retirement benefit check.
In her psychiatrist sessions, Julie learned that she was darn mad that this had happened to her, that she was dependent on certain medications to get through her days and that people were treating her like she was crazy sometimes, especially when she described her levels of pain all these months after recovering from a stroke. She was always told that she shouldn't still be having pain.
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, she would not have been able to afford all the treatment and medications she needed, because she had lost all of her income due to no longer being able to continue working at the restaurant and at the insurance company.
As soon as her new insurance was approved, Julie began an outpatient physical therapy program. Some days she was able to go to her program and other days she couldn't get out of bed to get ready for the van to come 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 almost always experienced pain in her foot which now was traveling up past her hip. Her doctors, thinking the exercise program might have been too rigorous for her, altered her exercise plan by adding heated water therapy exercises, and changed the dosage of her pain medication.
Her ongoing complaints were then suggested to be the result of side effects of medications. No physician tried to get to 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 pain ravaged body that no one was addressing. Julie broke down and cried that medical professionals thought she was lying about the pain. They were always changing her prescription, she said.
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 a panel of other specialists to get to the root of her problem.
When the panel convened several weeks later, it was determined that Julie indeed had a stroke but that 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 name - Reflex Sympathetic Dystrophy - RSD.
Update from Rachael O'Halloran on 3/14/2014: RSD is also known as Complex Regional Pain Syndrome (CRPS)
Case One: September 1972
It was a new school year and Christy W, a 7th grader, was enjoying talking with her schoolmates, Anna and Mike, while leaning against the wrought iron fence in the schoolyard at recess time. Out of nowhere, a big 8th grader named Bruce pushed past Christy, shoving her 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. The bell signaled that recess was over and 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, waiting for her mother to get done work to come pick her up from school. The nurse put a couple of ice packs on the sore areas of her leg, foot and hand, then gave her one Tylenol, a new pain reliever that was being used in place of aspirin. She let Christy rest till her mother arrived at 3PM. By then her hip and her ankle were killing her and her fingers started to swell; Christy W thought she might have broken something.
Mrs. W got angry when she heard what happened and told the nurse she wanted the 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 the hospital in their neighborhood and the doctor ordered X-rays of her ankle, hand and hip to rule out a fracture. In their city, there were no MRI's or CT scans in hospital use in 1972. 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 bandages. He sent her home with crutches, a prescription for a few days of steroids for the inflammation and said to 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 6 to 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 all for everything was Epsom salts, but soaking only helped minimally. When Christy went upstairs to go to the bathroom, it was very painful.
Christy couldn't sit at the table for the dinner meal, but while on the couch, she drank soda, ate Fritos, Cheese Puffs and Potato Chips. Her mother supposed it was better than nothing, if anything just to line her stomach while taking steroid and pain medication. It seemed to Mrs. W that even laying on the couch made Christy get worse. Every time she woke up in terrible pain, her mother gave her more Tylenol.
Concerned that Christy would fall so far behind in schoolwork, Mrs. W called the school for a tutor so the child could keep up to date with her lessons. Asking about the boy who had hurt Christy, she was told that he said to say he's sorry.
Two days later, Mrs. W took Christy back to the Accident Ward because the pain had returned with a vengeance, her foot had swelled to double its size and the Tylenol was clearly 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. Her foot hurt more than her hand by now and she wanted something for pain, as long as it was 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. Finally, Christy thought, they would set her broken bone, put her in a cast and give her something for pain.
Just as it is now, standard practice in 1972 was to let fractures of the fibula heal on its own, order some 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.
Mrs. W brought her daughter back to the Accident Ward two days later. 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 touching the pain.
The doctor suggested to Mrs. W that maybe alternative medicine like acupuncture might be worth looking into because 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 sparingly. He refused to give her more Darvon and instead gave her a prescription for Motrin, a less potent pain medication.
Each day, Christy complained about everything: 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, yet they burned or were in spasm. She had dizzy spells and fatigue which could not be ruled out as a side effect of her medications. There was no reason the child should have so much pain, he told her mother. He wrote a referral for physical therapy and Christy went to treatments 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 almost monthly, trying to find relief for her 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 she would begin the cycle again with a new Accident Ward. Consequently the child had multiple prescriptions for pain being filled at several different pharmacies.
In 1973, an attending doctor called in the head of neurology who 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 age 13, she was too young to be considered for Multiple Sclerosis, Guillain Barre Sydrome, various forms of Arthritis and other neurological disorders, when the current criteria stated the average age of diagnosis was over 40.
Puzzled, her physical exam and pain assessment showed she truly had pain and 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.
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 permitted 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 conjunction with 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 present in patients who have had a stroke or heart attack. The injury to her heel produced a blood clot that likely caused her stroke. Her specialist speculated that if she had not had a stroke, she would probably be still dealing with RSD as a result of the 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 works for Julie.
Christy continued taking oral and IV pain medications, sporadically attended physical therapy and counselling sessions, and endured trigger point injections and nerve blocks. She was wheelchair dependent within five years from injury, on Social Security Disability and still living with pain even with 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 study promised pain medication, treatment and a small monetary compensation. She applied, was accepted and within six months, she had a definitive diagnosis of RSD. She told her doctor it was nice to finally know that she wasn't truly crazy after all, she just felt like she was.
She continues with physical therapy and has eliminated almost all salt and processed foods from her diet. Her pain management plan delivers 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.
Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome
Do you know anyone who suffers with Reflex Sympathetic Dystrophy (RSD)?
RSD was not even a blip on the radar back in 1972. It wasn't until the mid-1980s that RSD was even written up 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 others may feel that just being around others who are also in pain exacerbates their condition.
Each person has to do what works for them. Anyone who deals with pain on a daily basis would do well not to make "pain" a topic of conversation. Concentrating or talking about pain as well as external stimuli often makes pain 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.
OK, I chose this video for several reasons.
I want 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.
I want you 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 was on a course of Fetanel, a very strong opiate, which was not taking care of her pain. Tapering down off the drug is also discussed.
Lastly, certain terms the doctor uses 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 will become 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 is instructed to pace herself with heated water exercise therapy using the "hangover" guide.
Ketamine Treatment For RSD (CRPS) Spreading to Other Body Regions
Pain Scale - Faces of Pain
Pain and Pain Management 101
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 a patient is experiencing in order to provide a good treatment plan.
Pain is measured on a scale from numbers one to ten, with number ten being the worse pain imaginable. This is called a "Pain Scale."
When a patient says his pain is a "number 5" today, 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 he is feeling today.
If 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.
Incidentally, a patient who tells his doctor that is pain is "way off the charts" every single time he sees him, doesn't provide valuable information to his doctor. 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.
You can't measure "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 medication he prescribed for a patient (as opposed to how much the patient is actually taking) is very effective or not. He can increase or decrease as needed.
Some patients do actually get better, believe it or not, so that they don't require the same dosage or 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 in tandem with medication.
Addictive personalities might jocularly say decreasing usage with one doctor means the patient is getting his drugs elsewhere, so as to appear convincing to this "medication provider" that he is getting better.
This ensures when the patient asks for an increased dosage (in number of pills or milligrams) on a future visit for new manifestations of pain, the doctor will likely grant the prescription because the patient history indicated less usage in the past. It is a trick which addicts use to make sure they always have another "go to" person to obtain 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 is either prescribed or actually reports that he takes, the doctor knows there is a problem either with the patient's rating of his pain or if he has access to alternate sources of 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 produce a patient's pain. It is not a process that patients in pain look forward to because it will either set their pain in motion for the day if it has been relatively calm up to that point, or it intensifies their pain so they ask for immediate medication.
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 reported pain scale number or if he is holding back and not given the pain a high enough number.
Patients will under-report pain because they don't want to appear complaining so they don't get that "hypochondriac" look some doctors will show on their faces without meaning to.
By holding back pain, the patient is doing himself more harm than good.
It is a fact that a physician cannot adequate 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 leads to addiction and abuse of pain medication, so that now 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 originally started the treatment for, because pain from addiction is another kind of pain entirely. Withdrawal is painful and is primarily psychological. Pain from injury is also painful, and 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 more than one physician.
One of the components of the agreement is to conduct routine as well as 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 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 March 2014 by Rachael O'Halloran
It has been two years since awordlover wrote this article and RSD treatments as well as her resource list have changed considerably. Here are some newer resources to add to all of the above:
Howard Black's website: Definitive Library for RSD and Chronic Pain
RSD in Children - Getting children diagnosed and treated before RSD becomes chronic gives them the greatest chance of achieving remission. This site has many links to other resources.
Neuro Talk - RSD Forum - an online support group.
© Anne DiGeorge, April 2012
Edited on 3/27/2014 and 5/20/2015 by Rachael O'Halloran - to include more up to date videos, photos and to correct information regarding RSD category change to include CRPS
© 2014 awordlover