HOW IS CRPS DIAGNOSED?
CRPS can be diagnosed in a number of different ways. The best and most accurate way is a clinical diagnosis by a CRPS-educated physician, most often a Neurologist or Anesthesiologist.
Now we need a few definitions. What is a clinical diagnosis and what is a CRPS-educated physician? Lastly, are there other ways of diagnosing CRPS?
We need to answer the second question first.
A CRPS-educated physician is someone who is up-to-date with the latest information on Complex Regional Pain Syndrome, as well as someone who has treated a number of CRPS patients successfully. The information in this field is changing rapidly and in the last few years has taken enormous steps forward. The more that is learned, the more it is shown that the best treatments for CRPS are the ones that are the least invasive (invasive means surgery is involved). If a physician, or physical therapist is not familiar with treating CRPS patients then serious problems and setbacks can sometimes result. CRPS is one of those diseases where doing the wrong thing is often worse than doing nothing.
A clinical diagnosis occurs when the patient presents himself to the physician. It is what the Doctor actually sees and hears in his office, not just reads in a test or report. To quote Sir William Osler: “Observe, record, tabulate, communicate. Use your five senses…. Learn to see, learn to hear, learn to feel, learn to smell, and know that by practice alone you can become expert. Medicine is learned by the bedside and not in the classroom. Let not your conceptions of disease come from words heard in the lecture room and read from the book . See, and then reason and compare and control. But see first.”
What does the Doctor look for? Not all patients will have the symptoms listed below at every stage of the disease, especially early on, but the physican should be alerted to:
- Pain that exists long after the injury has healed.
- Pain that is out of proportion to the injury sustained (these are two hallmarks of the disease that Doctors look for).
- Changes to the skin; color/texture, dryness, tightness, redness, skin rashes, possible sores, as well as an increase or decrease in sweating.
- The presence of a constant chronic burning pain. While there are some cases where there is no burning pain, it is rare.
- Spasms of the blood vessels and muscles.
- The existence of a prior injury that could have damaged a nerve.
- Use of casting, surgery difficulties, injury subsequent to the original incident.
- Lastly, they need to look for symptoms that the patient might not realize are significant and need to be shared with the doctor; some of these are changes that occur in the limbic system.
- short-term memory loss
- difficulty concentrating
- insomnia
- difficulty finding the right word when speaking
- sensitivity to sound, vibration, smell, barometric pressure changes, and touch
- depression
There are other things to look for, obviously, but this gives you a basic idea.
Are there other methods used to diagnose CRPS? Yes.
Many are not very effective at truly diagnosing CRPS but are used none-the-less. Among these are thermography, MRI’s, Cat-scans, X-rays, Bone-scans, accupuncture, EMG’s, and many others. While some of these may show they presence of CRPS or some of its symptoms, often times it misses the disease altogether.
Whether the diagnosis is made, whether it shows up in these scans can depend on the stage of the disease, the age of the patient, other diseases or problems the patient may be experiencing, how well medications might be working at the time of the test, as well as the skill level of the person administering the test. Unlike a typical and straightforward disease that is easily delineated and diagnosed with clearly defined symptoms, CRPS is a difficult diagnosis that takes a skilled and CRPS-experienced physician in a clinical setting where he can observe the patient’s symptoms, sometimes over several visits, at different times of the day, and under different stress levels.
Different times of the day? Yes. Many patients experience changes in symptoms and pain levels based on the time of day. If you are one of these patients make sure to schedule your Doctors appointments accordingly. One way to determine if this description fits you is to keep a pain diary for a month. it would also be useful to refer back to when discussing your case with your physician as you will be able to provide more specific examples regarding your pain and other symptoms.
Just a side note. We came across this quote from Doctor John F. Dombrowski, a pain specialist recently and felt it was important to include it here.
“Just because you can’t find the exact source of someone’s pain doesn’t mean they don’t feel it,” says John F. Dombrowski, MD, a Washington, D.C. pain specialist. “No test can measure the intensity of pain, no imaging device can show pain, and no instrument can locate pain precisely. This doesn’t mean pain can’t be treated. “We don’t need to know the exact cause of the pain to try to make it feel better.”
DOES IT MATTER WHEN PATIENTS ARE DIAGNOSED?
Patients must be diagnosed and treated aggressively within the first two to twelve months of the onset of symptoms if there is to be any real chance of reversal. Note that that is the onset of symptoms and not actual diagnosis, since many times patients are not diagnosed until well after that first twelve months are passed.
While some Doctors may quote a lower figure, all would agree that the odds decrease significantly every month after that, with the greatest drop after twelve months. Also, the younger the patient, the better their chances at reversal. Now there is new information available to Doctors to help them with their diagnosis. Typically, patients see between 5 and 10 Doctors before getting a correct diagnosis. According to a national survery conducted by American RSDHope, our survey came back with 55% seeing 7-10 doctors, 17% seeing 5-6 doctors and 14% seeing 3-4 doctors. That number is dropping slowly as the knowledge about CRPS increases.
That survey was done back in the year 2000. Just over ten years later that number had already dropped to the majority of patients seeing 5 or less physicians before being diagnosed! That is a huge improvement in a little more than a decade. In another ten years we hope to get that number down to 2 or maybe even 1. The year 2015 finally saw two drug companies begin studies into CRPS-specific medications for the first time in history! Life for CRPS patients is getting ready to take a significant turn for the better for the first time ever.