Thanks for joining our chat Feb. 9 with Dr. Paul Christo of Johns Hopkins to discuss Complex Regional Pain Syndrome (also known as Reflex Sympathetic Dystrophy). The chronic pain condition is characterized by intense or burning pain, usually in the arms, hands, legs or feet. Doctors do not know the cause, but can be related to an injury or even surgery. Christo, director of the Multidisciplinary Pain Fellowship Training Program at Johns Hopkins University School of Medicine, will take reader questions on the nature of the disease and the latest treatments.

Read the transcript below. Find more live chats on a variety of health topics from national experts here.

Note: Comments made here are for informational purposes only and do not represent or substitute as medical advice. Patients are advised to consult their own physician or pharmacist for advice, diagnosis and treatment.

 Health chat: CRPS and RSD(02/09/2011) 
11:27
Baltimore Sun Health: 
Hi, we'll be starting our live chat at noon, but feel free to submit your questions now. Thanks!
Wednesday February 9, 2011 11:27 Baltimore Sun Health
12:02
Baltimore Sun Health: 
Hi, Dr. Christo will be with us momentarily to start taking questions on CRPS/RSD. We will try to get to as many questions as possible within the hour, answering on a first come, first served basis. We did get quite a few in advance and we'll try to combine some that are similar.
Wednesday February 9, 2011 12:02 Baltimore Sun Health
12:03
[Comment From KimberlyKimberly: ] 
Thanks in advance for accepting questions for this chat. My CRPS questions: Are there cognition changes, short or long term, related to this disorder? Is anything yet known about the long-term effects of CRPS to the affected limb? Five years post-trauma, I still suffer regular (several times per day) occurances of what appear to be a vascular "slow-down" to my hand, resulting in a hand that has a white appearance, is cold to the touch, and is painful. The skin of the hand has changed; it is noticably thinner than the other, like the skin of a much older person. Is anything yet known about the long-term effects of CRPS to the rest of the body?
Wednesday February 9, 2011 12:03 Kimberly
12:04
drchristo: 
I’m not aware of any direct changes in cognition that the condition causes. That being said, it is felt that psychological stressors and poor coping skills can influence the course of the disease and its severity. It¿¿¿s felt that the symptoms of CRPS in the affected arm or leg change from being warm and red in the acute phase to bluish and cold in the chronic state. This corresponds to what you¿¿¿re describing actually. The key to treatment is maintaining a functional arm or leg by doing physical therapy (strengthening, stretching, stress loading) so that you do not lose function. Some patients report spreading of CRPS symptoms to other limbs and others will have numbness on the entire side of the body that is part of the diseased arm or leg. It is believed that both the spinal cord and brain undergo changes (a reorganization of nerves and neurotransmitters) as a result of CRPS. This is the reason that CRPS really reflects a disease of the central nervous system (brain and spinal cord) as well as part of the nervous system called the sympathetic nervous system (controls the opening and closing of blood vessels).

Wednesday February 9, 2011 12:04 drchristo
12:05
[Comment From N.N.: ] 
Questions for Dr. Paul Christo regarding CRPS: 1. For someone who has CRPS in the feet and hands and was diagnosed 3 years ago, would you recommend a spinal cord stimulator? I've heard that the spinal cord stimulator electrodes and battery pack can easily be moved out of place or shift inside the body, is that your experience? How often do complications like these occur with the SCS units? 2. I read this article about oral cannabinoid and how it was associated with up to 60% reductions in pain in 10 patients with CRPS, according to research presented at the 2010 annual World Congress on Pain in Montreal. Do you think this is something worth pursuing for a patient with CRPS? 3. What are your thoughts on Ketamine infusions?
Wednesday February 9, 2011 12:05 N.
12:07
Baltimore Sun Health: 
If you want to learn more about CRPS, here are some websites worth checking out
Wednesday February 9, 2011 12:07 Baltimore Sun Health
12:07
Baltimore Sun Health: 
http://www.mayoclinic.com/health/complex-regional-pain-syndrome/DS00265
Wednesday February 9, 2011 12:07 Baltimore Sun Health
12:08
Baltimore Sun Health: 
http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm
Wednesday February 9, 2011 12:08 Baltimore Sun Health
12:08
Baltimore Sun Health: 
http://www.rsds.org/index2.html
Wednesday February 9, 2011 12:08 Baltimore Sun Health
12:08
Baltimore Sun Health: 
http://www.theacpa.org/default.aspx
Wednesday February 9, 2011 12:08 Baltimore Sun Health
12:08
Baltimore Sun Health: 
And here¿¿¿s a listing of support group resources nationwide
http://www.rsds.org/4/support_groups/index.html#Maryland
Wednesday February 9, 2011 12:08 Baltimore Sun Health
12:10
[Comment From CarolinaCarolina: ] 
Another web site: http://www.rsdfoundation.org/es/es_cpg.html
Wednesday February 9, 2011 12:10 Carolina
12:11
drchristo: 
N,
Spinal cord stimulation can be beneficial for CRPS or the hands or feet. The lead (wire) that¿¿¿s placed on top of the spinal cord can move, but we do our best to prevent that from occurring. The battery pack can move less often. There is a risk (25% and higher sometimes) that the system will require a corrective surgery. Oral cannabinoids have not been studied sufficiently to make a recommendation on usage for treating CRPS. I have not used them. The work being done on ketamine is encouraging for patients that suffer from extreme CRPS. Topical ketamine and infusions that do not produce unconsciousness have support for effectiveness. Ketamine isn¿¿¿t used that often around the country because it¿¿¿s regarded as a newer and less studied treatment for CRPS.

Wednesday February 9, 2011 12:11 drchristo
12:12
[Comment From SueSue: ] 
Hello Dr! I have severe CRPS & do not respond well to many meds or other modalities, but have had positive response to Ketamine infusion, which has helped to "turn down" both the pain & the accompanying edema for a couple months at a time. As you know, with CRPS, any help can be life-altering. Unfortunately I have only been able to get into a program that does 3-day outpatient infusions. My question is 3-fold: 1.Does Hopkins do Ketamine infusions? Currently I have to travel for these treatments & it's grueling. I would love to try 5 or 10 day infusion sessions to see if the response would be longer-lasting &/or stronger (Hopkins is close enough to do outpatient fairly comfortably). 2.Also, would you consider infusions that combine Ketamine & lidocaine? I do respond to Lidocaine cream, but the patches are too "hot." I have some breakthrough pain even during the IV Ketamine infusions & have a sense that adding lidocaine might help in both short & long term. I've used many creams & gels to help turn down the heat & pain, including "Freeze_It" & "Ice Blue." Unfortunately, most oral meds have been of little help, & I need more between-infusion management. 3.Have you ever used oral ketamine? I read about its use when I first went for infusions, I do not like the psychomimetic side effects--in fact I think Versed is also a dysphoric drug & is not the best adjunct t
Wednesday February 9, 2011 12:12 Sue
12:13
[Comment From CarolinaCarolina: ] 
In English: http://www.rsdfoundation.org/index.html
Wednesday February 9, 2011 12:13 Carolina
12:13
drchristo: 
Sue,
Hopkins does do limited ketamine infusions for patients in our pain clinic with CRPS or other conditions. This would be done as an outpatient, so no hospitalization necessary. The research into ketamine infusions is encouraging, but not so for infusing local anesthetics (lidocaine). Oral ketamine isn¿¿¿t available in the US to my knowledge. The military is developing a nasal form of ketamine for use on the battlefield which may be available for civilians someday. The long term effects of ketamine use for pain are not fully understood, so pain physicians across the country do not typically use this drug. In fact, infusions of ketamine or putting patients in a ketamine “coma” is only performed at a very few centers in the US.
Wednesday February 9, 2011 12:13 drchristo
12:15
[Comment From SueSue: ] 
My 15-year-old daughter was diagnosed with CRPS one year ago after a contusion of the knee from snowboarding. She was in an inpatient rehab program for 3 weeks in July and still continues to suffer from allodynia and pain in all her limbs. Treatment in children seems to be different in children than for adults. Do you know the current theories on CRPS treatment for children?
Wednesday February 9, 2011 12:15 Sue
12:16
[Comment From marymary: ] 
In answer to the last part of the first question, RSDSA is conducting a study on the long-term effects of CRPS
Wednesday February 9, 2011 12:16 mary
12:21
drchristo: 
Sue,
More experts are now recommending that children with CRPS be offered similar treatments as adults: nerve blocks, medications. Many children undergo intensive physiotherapy probably like your daughter as well as psychological therapies. It¿¿¿s not as easy to perform nerve blocks on kids because of their fear of needles and the need to lie flat and still during the injection. The pediatric pain specialist that works with me will refer kids for nerve blocks and she will use similar medications (gabapentin, for instance) that we use for adults.
Wednesday February 9, 2011 12:21 drchristo
12:22
[Comment From CRPS caregiverCRPS caregiver: ] 
Hi Dr. Christo, Thank you so much for helping CRPS patients & caregivers with this session! My wife suffers from CRPS (both feet & legs) and has many objectively visible & measurable symptoms -- severe temperature dysregulation (that I & her doctors can feel & see), edema, skin color changes, skin lesions, nail changes (intensely grooved & growing in new, curving patterns), some muscle changes including toes curving downward & twisting-- as well as severe constant pain (she describes it as burning, intensely electric, stabbing, stinging, throbbing, deep aching, etc.) & loss of mobility. There's a huge circulatory component: temperature vacillations (below 60F to 100F-- skin thermometer doesn‘t register below 60), swelling & redness. The temp differences can be bilateral or unilateral, up to 20 degree F difference between feet as they change from cold to hot & back. Elevating legs & feet has become necessary whether she's in or out of bed. This situation makes even wheelchair mobility a challenge. How can she get help with these circulatory aspects? It often looks as though her feet were going to burst from the red blood engorgement & edema. The heat-- to the touch-- is remarkable. Her pain is frequently off-the-scale. She's a classical pianist & most days cannot even sit in a position that enables her to play, much less to perform. She has never had a microcapillaroscopy. Do you do these at Hopkins?
Wednesday February 9, 2011 12:22 CRPS caregiver
12:22
[Comment From CRPS caregiverCRPS caregiver: ] 
As a complicating feature she has long-standing Raynaud's in both feet & hands, but the CRPS is something that started years after the RP diagnosis & its classic symptoms, which were always: white to red to blue, always with a return to normal after warming. Now she cannot stand even lukewarm water, & there seems to be no "normal" or medium temperature for her feet. She says that when they are frozen they are less painful than when they are hot, but the yo-yo situation is pronounced. Could chronic changes in vessels from the RP be making her CRPS temp changes more extreme, & could addressing this aspect help to calm the loop of CRPS pain & dysfunction? She was diagnosed with CRPS by two anesthesiologists & a neurologist who know about her RP & were able to differentiate the CRPS, but she has no rheumatologist at present. We are doing all we can to manage, but need more help. Thank You, Gorden **As a side-note, one of my wife's first cousins suffered from CRPS, & died of ¿¿¿sudden¿¿¿ cardiac complications at age 43. He was being treated at the Cleveland Clinic at the time of his death. His doctor there told our family that his cardiac symptoms were likely caused by CRPS.
Wednesday February 9, 2011 12:22 CRPS caregiver
12:23
drchristo: 
Gorden,
I would recommend that she be evaluated by a pain physician. The vascular changes that you are describing (temperature changes, redness) and the swelling can often be reduced with nerve blocks called sympathetic blocks. The nerve blocks can reduce pain as well and better permit your wife to do physiotherapy which can work on her twisting and curving toes. Sometimes, drugs called calcium channel blockers can improve circulation in CRPS. I¿¿¿m not sure that microcapillaroscopy would be of any value in terms of treatment. Other medications like gabapentin (neurontin) and antidepressants (nortriptyline) can be useful in treating CRPS. The Raynaud¿¿¿s probably worsens these vascular changes that you are describing. The sympathetic blocks can be helpful for both CRPS and the Raynaud¿¿¿s. Spinal cord stimulation is beneficial in CRPS and can be considered if your wife doesn¿¿¿t respond to other treatments.
Wednesday February 9, 2011 12:23 drchristo
12:26
[Comment From GuestGuest: ] 
Thank you in advance for holding this live chat. My question to you is if a patient has tried one nerve block and it did not work, should she try another? Patient is a 17 y/o female who started experiencing symptoms two weeks after having nerve decompression surgery.
Wednesday February 9, 2011 12:26 Guest
12:30
drchristo: 
If the nerve block was performed properly, then I'm not sure that I would do it again. I realize that it's hard for you to determine the response to my last statement. Sometimes, I wil try another block again if the first one wasn't as accurate as it needed to be or if certain side effects occured that prevented the patient from determining if the nerve block was helpfu.
Wednesday February 9, 2011 12:30 drchristo
12:30
[Comment From MacMac: ] 
Any conection to shingles?
Wednesday February 9, 2011 12:30 Mac
12:30
drchristo: 
Mac,
No connection to my knowledge.
Wednesday February 9, 2011 12:30 drchristo
12:32
[Comment From GuestGuest: ] 
What is the best evidence based method of diagnosing CRPS?
Wednesday February 9, 2011 12:32 Guest
12:35
drchristo: 
Most recently, an expert panel validated what's called the Budapest Criteria for diagnosing CRPS. (Harden RN, Bruehl R in the journal called, Pain 2010). The criteria involve reporting one symptom in each of 4 categories and displaying one sign in 2 or more categories. These are the categories:

Sensory: report hyperesthesia = increased sensitivity to a sensory stimulation; evidence of hyperalgesia or allodynia

Vasomotor: temperature asymmetry or skin color changes

Sudomotor/edema: edema or sweating changes

Motor/trophic: decreased range of motion or weakness, tremor, dystonia or trophic changes (hair, nail, skin changes)
Wednesday February 9, 2011 12:35 drchristo
12:36
[Comment From NikkiNikki: ] 
I know there are different types of spinal cord stimulators, are some more effective than others?
Wednesday February 9, 2011 12:36 Nikki
12:37
[Comment From MikeMike: ] 
What are your thoughts on Spinal Cord Stimulation.I have CRPS/RSD for 17 years.In my right hand and arm,shoulders,back,and both legs and feet.
Wednesday February 9, 2011 12:37 Mike
12:38
drchristo: 
Nikki,
There are 3 manufacturers of stimulators and they all can be equally effective. I'm not aware of any studies that compare one stimulator (Medtronic) to another (St. Jude or Boston Scientific) for treating CRPS.
Wednesday February 9, 2011 12:38 drchristo
12:42
drchristo: 
Mike,
There is evidence that these stimulators can help reduce pain, but that the benefit diminshes in time (over 5 years). That does not mean that patients don't report that it's still helpful, though. The stimluators can sometimes help patients tolerate physiotherapy which is important part of restoring function to the affected part of the body.
Wednesday February 9, 2011 12:42 drchristo
12:42
[Comment From CarolinaCarolina: ] 
Good afternoon, I want to know about the effectiveness of fentanyl patches in CRPS?. How to counter nausea and vomiting that are the main side effect? Thank you in advance.
Wednesday February 9, 2011 12:42 Carolina
12:45
drchristo: 
Carolina,
Opioids are often used to treat CRPS, especially when other treatments fail. There is evidence that sustained release morphine may be helpful, but we don't have much information on other opioids. Nausea and vomiting can be controlled with medicines like reglan, zofran, or even a patch worn behind the ear called scopolamine.
Wednesday February 9, 2011 12:45 drchristo
12:46
[Comment From cc: ] 
I am taking 4.5 mg low dose naltrexone (ldn) to treat my crps pain--do you know of this treatment and what are your thoughts/recommendations? Does it help long term or only short term? Does it have any long-term or short-term side effects? Anything else to know about ldn?
Wednesday February 9, 2011 12:46 c
12:50
drchristo: 
C,
I haven't used naltrexone for CRPS, but I'm glad it's helping you. I'm really not aware of studies on using it for this condition either. Be aware that if you start using an opioid, you may not feel the effects because the naltrexone blocks the receptor that the opioid bind to in the body. If you need surgery, make sure that you tell the surgeon and anesthesiologist that you are using naltrexone.
Wednesday February 9, 2011 12:50 drchristo
12:52
[Comment From LidaLida: ] 
When do you make the distinction of oral medications are not helping severe CRPS pain and it is time to consider an implanted electric stim device or a drug pump?
Wednesday February 9, 2011 12:52 Lida
12:56
drchristo: 
Lida,
I would consider other therapies like a spinal cord stimulator if your symptoms are getting worse or simply not improving at all. There are classes of medicines that can be used alone or together first, then topical drugs like lidocaine patch, gel, or cream or topical capsaicin. Think about nerve blocks as well. Drug pumps that use baclofen to control spasticity for CRPS have been studied and found useful.
Wednesday February 9, 2011 12:56 drchristo
12:58
[Comment From SamanthaSamantha: ] 
Do you believe it is better to keep using the afflicted limb with mild to moderate exercise than doing no exercise?
Wednesday February 9, 2011 12:58 Samantha
1:00
drchristo: 
Samantha,
Rehabilitation (desensitization, mobilization, isometric strenghening) of the limb is critical to maintain function and to help prevent disuse atrophy of the muscles. If you can tolerate the exercise, I would suggest continuing it.
Wednesday February 9, 2011 1:00 drchristo
1:01
[Comment From MaryMary: ] 
I need orthodontia, but have been told this would be too painful and aggravate inflame me even more.What is your opinion? My bite is off so much that the migraines are a result of this in addition to the RSD.
Wednesday February 9, 2011 1:01 Mary
1:05
drchristo: 
Mary,
Although the research is minimal on the topic of prevention of CRPS, there is some support for doing things like postponing surgery until the signs of CRPS are minimal, using anesthetic techniques like nerve blocks/epidural blocks, and even using something called salmon calcitonin injected under the skin daily for 4 weeks during and after surgery to help prevent CRPS from relapsing.
Wednesday February 9, 2011 1:05 drchristo
1:06
Baltimore Sun Health: 
That's all the time we have for today. Thanks for all of your great questions. Sorry we couldn't get to them all. We'll be back in 2 weeks to discuss another pain topic.
Wednesday February 9, 2011 1:06 Baltimore Sun Health
1:06
drchristo: 
Thank you for your insightful questions today. I hope my responses were helpful.
Wednesday February 9, 2011 1:06 drchristo
1:07