Online Health Chat with a Cleveland Clinic Physician
April 30, 2014
Complex Regional Pain Syndrome (CRPS) is diagnosed when a patient has severe, spreading chronic pain with redness, fluctuating skin temperature, and sometimes changes in body hair and nail growth. Adults and children can suffer from this condition. Because of the chronic pain, most patients find it hard to use their affected body part—most often the arm or leg
Unfortunately, CRPS is not a widely known medical condition by many physicians. Also, it is not well understood, so it is often misdiagnosed. Many patients receive the wrong treatments or no treatment at all.
After proper diagnosis, the treatment of CRPS requires multiple therapy approaches carefully coordinated by physicians and therapists who are experienced in this complex condition. Treatment involves physical, occupational and psychological therapies — such as biofeedback, relaxation techniques and group therapy — as either inpatient or outpatient basis. Pediatric programs should emphasize psychological approaches, for patients and their parents alike, because of the importance of developmental changes in children’s responses to pain.
The techniques learned in these programs, sometimes together with well-chosen medications, enable some patients with CRPS to successfully manage their pain and lead active, “normal” lives. Other patients require additional interventions, such as nerve blocks or spinal cord stimulators that modulate pain by delivering electricity to the spine.
Let’s Chat About "Ask the Expert: Complex Regional Pain Syndrome (CRPS)”
Moderator: Welcome to our chat today with a Cleveland Clinic pain management and anesthesiology specialist. We are thrilled to have him here with us to share his knowledge about complex regional pain syndrome.
Moderator: Let's begin with some of our questions.
Complex Regional Pain Syndrome (CRPS) Diagnosis
Tazzy: How is complex regional pain syndrome (CRPS) diagnosed?
Cleveland_Clinic_Physician: CRPS is a clinical diagnosis and there are no tests for CRPS. The only tests that can help with diagnosis are the sweat test and laser scintigraphy. All of the other tests produce large false negative and false positive results. The Budapest Criteria were accepted as the best criteria to make a diagnosis by the International Association for the Study of Pain (IASP) (http://www.ncbi.nlm.nih.gov/pubmed/20493633).
Nakky: What exactly is the Budapest Criteria?
Cleveland_Clinic_Physician: The Budapest Criteria for clinical diagnosis of complex regional pain syndrome (CRPS) must report one symptom in three out of the following four categories: sensory, vasomotor, sudomotor/edema and motor/trophic. There must also be one sign in at least two of these categories.
LaruaJava: I am a 54-year-old female patient who has been diagnosed with autoimmune disorder, severe arthritis, fibromyalgia, hypothyroid, kidney disease, and more. I have had several recent hospitalizations for unexplained infections, also resulting in ICU admissions for a sudden drop in blood pressure and kidney disease. One admission involved redness of the foot (with no trauma nor injury) that spread across the top of the foot. The hospital treated this with antibiotics that took 10 days to work. Currently, I have bright red extremely painful areas on the skin in the underarm area and in folds. It is being treated with Diflucan® (fluconazole). Traditional narcotic pain medications do not touch this pain. Could this be complex regional pain syndrome (CRPS)? How can I find out?
Cleveland_Clinic_Physician: This question is difficult to answer without a full examination. To determine if this is clinically CRPS, both signs and symptoms must meet Budapest Criteria.
RSD Tri-Athlete: Can complex regional pain syndrome (CRPS) affect vision, cause headaches, and frequent muscle spasms not at the actual affected site?
Cleveland_Clinic_Physician: Yes, to all. The visual changes are real, but usually not measurable.
Hooper: What is the difference if any between fibromyalgia and complex regional pain syndrome (CRPS)?
Cleveland_Clinic_Physician: Fibromyalgia and CRPS are considered different syndromes. There is no evidence of a cause of similar mechanism.
CRPS Spread and Full-body CRPS
warehouse: Having been diagnosed in 2012 with complex regional pain syndrome (CRPS) in my hand, is it possible to have this travel down into my legs and feet by 2014?
Cleveland_Clinic_Physician: Yes, CRPS can travel to another region from the primary site. We think that spinal cord stimulation (SCS) if applied early may prevent stead to another site, but I am not sure. Spinal cord stimulation is still the best treatment for patients who have not responded to medications and/or therapy. It can be effective for both upper and lower extremities. In some cases can be used to treat both upper and lower extremities together.
janet: I have had reflex sympathetic dystrophy/complex regional pain syndrome (RSDS/CRPS) since 1992. I have been advised that patients with RSDS in their lower limbs will see difficulties with urination and bowel efforts eventually. Do you find this to be so?
Cleveland_Clinic_Physician: Yes, you are correct. There are several cases documented in the medical literature of patients with longstanding CRPS with complaints of bladder dysfunction, bowel dysfunction and abdominal pain. Because CRPS involves the entire nervous system—even though it may start at one site like the foot, this is a chronic condition lasting many years. It often causes the autonomic nervous system (the nervous system that looks after internal organs) to react. Therefore, there isn’t proper regulation of functions, which ultimately causes urinary and bowel problems.
Kfrid: How do you address full-body complex regional pain syndrome (CRPS) that has been unsuccessfully treated?
Cleveland_Clinic_Physician: 'Full body' CRPS does occur, but it may be the result of more than one disease. If CRPS starts in one limb, for example, and then spreads to involve another limb or even all four limbs, this will impact all of the trunk muscles. While this is not necessarily CRPS, the myofascial (muscle pain) may produce what people call 'full body' CRPS. Treatment of this involves gradually sorting out muscle groups individually until all of the myofascial pain is under control This requires months of treatment and will need physical therapy, occupational therapy and behavioral medicine all working together.
c.c.345: Does dry needling for complex regional pain syndrome (CRPS) work?
PSTIM™ (pulse stimulation treatment) works for me in certain areas.
Cleveland_Clinic_Physician: Yes, dry needling for CRPS is particularly effective if there is myofascial (muscle) dysfunction. Treating the myofascial (muscle) dysfunction effectively may reduce the other all effect of CRSP pain. I agree that PSTIM™ can be effective in this case.
Bionicknee: Have you found any medications that work better than Neurontin® (gabapentin) for the nerve pain that will not cause weight gain?
Cleveland_Clinic_Physician: Yes, there are many different anticonvulsants like gabapentin before giving up on their use. One medication Topamax® (topiramate) will reverse weight gain. However, it must also be effective in treating the CRPS pain.
Chrisk: What recommendation would you suggest as the next step in the treatment of
complex regional pain syndrome (CRPS) after a failed spinal cord stimulator (SCS) trial? I am in constant pain. Medications such as morphine cause constant sleepiness, so I currently use Vicodin® (hydroxycodone) with little relief.
Cleveland_Clinic_Physician: I would recommend considering Prialt® (ziconotide) given intrathecally (spinal infusion).
Morethan2hands: Have you had success with patients who cannot tolerate medications?
Cleveland_Clinic_Physician: Yes, there are many methods that can be tried, including physical, behavioral (psychological) and other interventions that can be used to target different areas causing the CRPS pain.
jkee: I was a patient of yours in the early 1990s. What are your feelings about intravenous ketamine? Do you know the status of neridronate? Is it FDA approved for reflex sympathetic dystrophy (RSD)?
Cleveland_Clinic_Physician: Ketamine can be useful for complex regional pain syndrome/reflex sympathetic dystrophy (CRPS/RSD). It may be given over a five-day period with three to four hour infusions. About 50 percent of patients experience relief for six to 12 months. This of course being said, 50 percent of patients will not have a long-lasting results. This treatment can be repeated—particularly when a long duration of improved symptoms result. We do not know whether ketamine or any other treatment of CRPS will prevent the spread to another site. However, ketamine and—for that matter—any other treatment when applied early may prevent CRPS for worsening. And we feel that early treatment may prevent or delay spread.
I have not used neridronate in my patients. The other biphosphonates may help a little bit with pain at the beginning, but overall they are not very successful drugs to treat RSD.
ChrisK: Is there any research using ketamine to reduce CRPS symptoms?
Cleveland_Clinic_Physician: Yes, there is continued research in the U.S. and overseas regarding the use of ketamine to reduce symptoms. It seems that ketamine is more likely to be effective in CRPS and not other conditions like fibromyalgia. Almost 80 percent of patients diagnosed early with CRPS and treated with exercise and sometimes a local block will get better and not have any further problems with their condition.
Sympathetic Blocks and Epidural Infusion
Kfrid: Can a nerve block be done after a year with the disease? When is it too late for nerve blocks if the patient has never had them before?
Cleveland_Clinic_Physician: Yes, but it is best to be done early if you are referring to a sympathetic block.
Tiant: I have had reflex sympathetic dystrophy (RSD) for three years after surgery on my left foot. I have had various treatments, including hyperbarics and sympathetic blocks. I live in Cleveland, but I visited a physician New Jersey. I tested positive in both feet with thermography. He is very certain based on my clinical profile (good movement, but chronic burning, aching and disabling pain) that I should undergo epidural infusions of bupivacaine in a hospital for five straight days. He said that I may achieve a year’s relief. Could I get this done at Cleveland Clinic, and what are your thoughts on its efficacy?
Cleveland_Clinic_Physician: I am not sure that a continuous epidural over a five-day period is economically effective. A tunneled epidural catheter can be placed and attached to an external pump that can be managed through home care. We do this regularly at Cleveland Clinic.
Spinal Cord Stimulation
Tiant: Will a spinal cord stimulator work on people who have reflex sympathetic dystrophy (RSD) in both feet, and also from the ankle to the knee in one of the legs? Also are there any particular physical therapists that you would recommend at Cleveland Clinic for RSD?
Cleveland_Clinic_Physician: Spinal cord stimulation is still the best treatment for patients who have not responded to medications and/or therapy. It can be effective for both upper and lower extremities. In some cases can be used to treat both upper and lower extremities together.
Bionicknee: I have had CRPS in my left arm and leg for four years. I had a spinal cord stimulation (SCS) device implanted at Cleveland Clinic in September 2013. It covers my left leg where the worst pain is located. How soon would you recommend the left arm being added with another lead? I have the 16-electrode lead, but not the corresponding battery pack. I know that would need to be replaced.
Cleveland_Clinic_Physician: I would add the left lead as soon as both signs and symptoms occur in your arm.
lab fan: Is it common that the pain from complex regional pain syndrome (CRPS) can come through a spinal cord stimulator (SCS) as mine does? I currently also have an implanted intrathecal drug pump and haven't found relief with this either despite a positive trial using morphine. What medications(s) would you suggest for treating CRPS?
Cleveland_Clinic_Physician: No, it is not common for there to be pain with a SCS (spinal cord stimulator). In some patients, however, the SCS does not reduce the pain and may cause a sensation like excessive stimulation. This may be your problem.
I agree that morphine and similar drugs for anyone younger than 50 to 60 years old will not respond well to this or medications for very long. The best medication to try is Prialt® (ziconotide), which should be on a trial basis and delivered via pump.
womenCRPS: I have had complex regional pain syndrome (CRPS) for three years now. It started in my left foot after a broken ankle and has now traveled up to my hip. I have had five epidural injections. The last formed a collection of blood in the base of my back that lasted for a few months. I had a lidocaine infusion and attempted a trial for spinal cord stimulation (SCS) with Medtronic device. I found the SCS to be very positional. I am being told that the SCS can be implanted with a patch so I won't have that problem. Is there anything else out there that I could try? I feel as though this is the last option I think that is offered. Also I heard that there is a new SCS that came out two years ago. Do you have any information on that?
Cleveland_Clinic_Physician: Sometimes, interventions like epidural and SCS, are technically problematic. If a SCS is positional, it can be placed in such a manner that prevents this being a problem. Someone performing these procedures should have vast experience and be well-known for this type of surgical procedure is the best way of ensuring that an effective treatment will occur. There is also a new unit that corrects for body position, but the nature of the positional change may require a different type of surgical approach to eliminate the problem completely.
Physical and Occupational Therapy Exercises
Tazzy: I am a certified occupational therapy assistant and was wondering what specific exercises or soft tissue mobilization techniques would benefit people with complex regional pain syndrome (CRPS) or even chronic pain in general? Most patients have neuropathic pain or chronic pain from an unknown cause. I think that when the cause is unknown, it often gets labeled as arthritis. I believe that in some patients perhaps it could be CRPS, since as you said it is not well known and often goes undiagnosed. I work in a skilled nursing facility with an average population of rehabilitation patients who are between the ages of 60 to 90.
Cleveland_Clinic_Physician: The specific exercise for CRPS is stress loading and isometrics, If there is too much sensitivity, isometrics only with desensitization before starting range of motion work. Yes, you are correct, these patients have new emphatic pain and the diagnosis is difficult.
janet: When I am under stress, the pain level increases. Do you have suggestions how to handle this as stress is unavoidable?
Cleveland_Clinic_Physician: Yes, you are correct. Stress plays a direct role in pain levels. Stress from any cause such as worry, partying, pain and financial concerns may all affect the part of the brain that is responsible for the autonomic nervous system. This system does not work properly in patients with complex regional pain syndrome (CRPS). The answer to this is to use stress-relieving methods like yoga, Pilates, hypnosis and psychotherapy, which are all effective
Coffee333: What do you recommend to those who have reflex sympathetic dystrophy (RSD) and are managing its symptoms, so that it doesn't get worse and cause many secondary conditions from occurring? For patients who have intolerance to pharmaceuticals, is there a holistic approach to treating RSD that has been successful?
Because of the neurological, autoimmune and inflammatory components of RSD, how do you get doctors who treat the varied components to communicate and work together?
Many doctors and other health professionals are unaware of RSD. What headway has been made in chronic pain education? Are medical schools including pain awareness and therapeutic options in their mandatory curriculum?
Cleveland_Clinic_Physician: Yes, holistic approaches to CRPS are effective. However, it may be necessary to deal with specific autoimmune/inflammatory components separately in order to control the overall symptoms. Sometimes, spinal cord stimulation (SPS) may be the only means to control the neurological symptoms.
The most effective way of treating CRPS which remains active is a multidisciplinary program that incorporates physical therapy/occupational therapy, psychotherapy, holistic therapy and whichever modality or method, e.g. SCS, may be necessary.
Finally, you are correct that there is a big amount of ignorance concerning CRPS. We are trying educate contemporary health disciplines (doctors, nurses, physical therapists, etc.) as well as being recognized in medical school curriculum. It is a slow process.
bock: Can hypnosis be an effective tool in pain management?
Cleveland_Clinic_Physician: Yes, it can be effective in a susceptible patient. In fact, it can dramatically affect the symptoms in some patients because it is working in the area where we believe some of the problems causing CRPS occur. This treatment is available at Cleveland Clinic’s Department of Integrative Medicine.
Surgery with CRPS
msugal: I was diagnosed with reflex sympathetic dystrophy (RSD) in 2004 following knee replacement. I visited you the following year to try to understand what was in store for me. At that time, my foot and lower leg were involved. No doctor wants to operate on me to correct problems as they are so afraid of making things worse. You had told me to make sure a nerve block was done if I did have to have surgery. I am at the point where I cannot tolerate the pain from a rotator cuff tear in my right shoulder along with a compressed nerve. This is on the same side as the RSD. Everything I have done—dental implants and radionuclide rhizotomy for L1-4, seems to cause nerve pain, but these are procedures where a block isn't done. Do I risk having the shoulder surgery as the pain has become intolerable after living with it for a few years with no sleep? Is there more danger of problems if surgery done on same side as the RSD?
Cleveland_Clinic_Physician: Yes, shoulder surgery can be done in a patient who has CRPS. As long as a regional anesthetic (local block) is done so that the pain from the shoulder surgery does not reach the central nervous system (CNS), this surgery can be safely performed. The main problem with existing mechanical injury like your shoulder will continually cause CRPS to flare up. Therefore, until this is fixed, it will not only cause pain because of the injury, but will also make the CRPS worse.
Tiant: Is there a protocol possibly with ketamine that you can order to help prevent the spread of reflex sympathetic dystrophy (RSD) during surgery for those that are already diagnosed with it
Cleveland_Clinic_Physician: The protocol varies. We use a daily four-hour infusion for five days. There is no evidence that it will prevent spread.
Calmare® Pain Therapy and Experimental Therapies
goshengirl: I am a 68-year-old female patient who after a mastectomy in 2001 has been in pain ever since. I take lots of medications. Regarding the Butrans® (buprenorphine) pain patch, I started at 5 mcg/hr, and then went to 10 mcg when it lost effectiveness in a year. I understand there are two more strengths, but I wonder if this is the best course of action as one builds up a continuing tolerance? What would you recommend for me after Butrans® patch? Have you heard of a treatment called Calmare® Pain Therapy, and is there any merit to it? Does Cleveland Clinic use it?
Cleveland_Clinic_Physician: Calmare® Pain Therapy could be effective in reducing your symptoms. It also might be useful to review the nature of your pain and determine if there is a particular source of the pain that could be treated with the Butrans® Patch.
At the present time, Cleveland Clinic department of pediatric rehabilitation is trialing Calmare® under experimental review. The FDA is overseeing the investigations.
lab fan: Do you see any new medications coming to treat complex regional pain syndrome (CRPS)?
Cleveland_Clinic_Physician: Yes, gene therapy is on the horizon in about eight to 10 years.
Lifestyle and Exercising with CRPS
RSD-Triathlete: I was diagnosed reflex sympathetic dystrophy (RSD) in my left hand and arm 10 years ago following a car accident. I have continuous pain and manage it with weekly with occupational therapy, occasional pain medications, Lidoderm® (lidocaine patches, nerve blocks (past stellate ganglion block and now epidural). I am extremely sensitive to many of the medications that have been tried. My pain level fluctuates on a daily basis from 3 to above 10 on a scale of 1 to 10. Generally when it reaches 7, I go in for nerve blocks to bring it down. Some are more effective than others. Two years ago, I started the sport of triathlon (I hurt whether I am active or inactive, but found staying busy and active has helped manage the symptoms a little better). I do find that I have more good days now, but my bad days are worse than ever. I am not a competitive triathlete. I always go at my own pace and try to listen to my body and rest when needed. Could I be making things worse overall? It helps my mental and physical state, but I don't want to worsen the RSD.
Cleveland_Clinic_Physician: To answer your question, a sport like triathlon is one of the more extreme sports. Although you regulate your own pace, you may actually exceed your capacity and cause the complex regional pain syndrome (CRPS) pain to get worse. The problem with CRPS is that there is a permanent injury in the area where you were originally injured. The injury affects nerves, the small blood vessels and the structure they serve, so you will have to regulate your activity to a lower level before developing CRPS. Again, yoga, Pilates and other stress-relieving activities would be helpful.
Cleveland Clinic Evaluation
lshade09: I was diagnosed with complex regional pain syndrome (CRPS) for only about one month now. They said there is no cure. I currently cannot walk on one foot due to pain and swelling. They have done spinal injections, but it didn't do any good. Is there anything else I can do for it? My doctor referred me to Cleveland Clinic for a second opinion, but right now I do not have insurance or a job. I don't know what else to do.
Cleveland_Clinic_Physician: You should be in an exercise program and whatever method of treatment should be used to help with rehabilitation. For CRPS/ RSD patients who would like an appointment with me, the best way to schedule this is to contact my secretary at 216.445.9559. She will be happy to help you maneuver through the system. You can also call our direct appointment line at 216. 445.5996. Finally, we have financial representatives that you may contact. (My office can supply that contact information)
nafky: I have been suffering with this for 18 months. I had seen over 20 doctors over the course of this nightmare. I did visit the Cleveland Clinic in May and June of 2013. I have tried so many different "adjuvant" medications that do not help at all—they only increased the pain and makes the situation worse. I do not have the typical symptoms of complex regional pain syndrome (CRPS). I have read everything I can get my hands on. It's just lots of horrible debilitating pain. Is there any test anywhere in this world that tests specifically for CRPS? I just feel there is something else wrong with me, and I cannot find a doctor to really listen to me and explore this case.
Cleveland_Clinic_Physician: I understand you have not had success in achieving effective treatment for CRPS. With all of the problems that you have it is difficult to respond to your questions. Perhaps another visit to Cleveland Clinic for another evaluation would be helpful. As I stated earlier, it is a difficult condition to diagnosis and there is not one specific test that definitively provides a diagnosis.
Moderator: I am sorry to say that our time is now over.
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