CRPS Physician Says Take Control of Your Treatment

CRPS Physician Says Take Control of Your Treatment

By Ed Coghlan

For the 200 persons who attended a CRPS Educational Conference in Long Beach, one presentation held everyone’s attention. Dr. Pradeep Chopra of the Brown Medical School gave a comprehensive review of CRPS—a disease that this pain management specialist has a special interest.

In an interview with the National Pain Report over the weekend, he argued that CRPS needs more research.

“The lack of good research is holding us back. It is a very complex condition and medicine doesn’t want to treat complex conditions because they take a lot more time and effort,” he said.

Dr. Chopra believes that his colleagues need to pay more attention to complex pain conditions like CRPS, Neuropathic Pain and Fibromyalgia.

“It’s much easier to treat a simple disease or injury. A CRPS patient can take me over four hours to evaluate,” he said. “If a doctor can see more patients during that time he/she will make more money. They don’t want to deal with complex conditions and there are no magic pills to treat CRPS.

Cancer is easier to treat,” he pointed out.  “At least there’s a set pattern of treatment.”

It’s because of that lack of a set pattern of treatment that Dr. Chopra urges patients to be more self-determinant is their care.

And he has some tips:

  1. Educate Yourself—“Find out what are the good treatments/the snake oil treatments/what are the harmful treatments…and basically be the leader of your own team to manage your own condition. There’s no one treatment that’s going to work for everyone.”
  2. Don’t Take Opioids – “Opioids not a good answer for CRPS especially in higher doses because they don’t work in CRPS and can actually make CRPS worse. They sensitize patients to CRPS. It makes the pain worse and we’ve seen again and again where patients come off opioids and have felt better. Research has shown that it actually helps their neuropathic pain once they come off opioids.” (By the way, Dr. Chopra thinks the whole opioid controversy is way overblown—saying that only .01% of chronic pain patients who take the prescribed medicine become addicted)
  3. Ketamine Is the Court of Last Resort-“ Before you get into ketamine infusion because it is logistically and financially challenging, try everything else first and see what needs to be fixed. Get your Vitamin D levels fixed. Ketamine is just another tool in your toolbox. It’s not the silver bullet. Patients spend a lot of money thinking Ketamine is going to work. That’s not a fact. It does help, but it has to be done in conjunction with other therapies.
  4. The Need for Restorative Sleep: Non-restorative sleep is when you brain is still awake while you’re sleeping which is common in CRPS patients. You wake up tired and exhausted because the nerves that turn on your “flight or fight” mechanism are activated which is part of CRPS. It’s not the pain that keeps you awake–it’s the nerves. Take drugs that address the flight or fight mechanism rather than taking a sleep medicine and importantly practice good sleep hygiene. No TV or computers in the bedroom. The bed is made for sleeping not watching television.

“Each patient needs to have a game plan and put the treatments all together,” he said. “Different things work for different people and you have to know what works for you. It will help your doctor.”

Treating CRPS has a big trial and error component.

“It’s like cooking,” he said. “You need a little bit of salt and little bit of pepper to make the dish tasty. Too much of one can give you bad side effects. You have to pay attention to your body.”

He spoke for over an hour and took questions for another half hour. If there hadn’t been a time limit, he might still be answering questions. People, both patients and physicians, buttonholed Dr. Chopra in the hall outside for most of the day, seeking his wisdom on how to handle this confusing and frustration and very painful disease.

The conference was sponsored by RSDSA.

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Authored by: Ed Coghlan

There are 27 comments for this article
  1. Carmel Maalouf at 12:00 pm

    I was prescribed opioids in the 90s along with other multidisciplinary treatments, but after nearly twenty years, of exposure to the meds, I became hyperalgesic, and developed serious trouble with pain control when I broke my foot and leg following a syncopal episode. My treatment included PT and narcan, drugs to minimize the effects of withdrawal, but I had been on fent 150 patches and 60 of vicodan daily, which for nubes, means I was getting the morphine equivalent of over 300mg an hr. and I was still going crazy with pain, and so spastic I thought I had MS. That is what happens when your doc doesn’t incrementally increase your dose when your body needs it. The peaks and valleys of vicuna also are associated with this phenomenon, although folks simply exposed intro to remifentanyl, a potent fentanyl, have developed this condition. I thought that I would kill myself if I went off narcs because I have so many conditions which are chronically painful including CRPS. I have not, but in two years I gained 70 pound and I have chronic sleep issues. Science is clear about the brain changes which occur with sleep deprivation including cerebral shrinkage, hypothalamus changes which affect hormones, and frontal lobe issues which affect emotional regulation. If a tumor was doing all this the medical community would surely do more than tell you to do yoga and learn how to medicate because they do not think medical marijuana or buprenphine is a good idea. One would want to try any chemical in their backpack. I had a surgery where my cardiologist blew off my need for narcs while he used cautery and dug around in my chest to get a cardiac monitor out causing me even more anxiety issues. This cannot go on practitioners have to stop passing the buck saying it is some other specialists responsibility. I am a Masters prepared nurse who studied acute and chronic pain, now retired.

  2. Tina at 8:30 pm

    I am suffering. I came off opioids believing it would help and I lay here with my legs on fire! Until you walk in our shoes no one can deny the true reality of how painful this disease is.

  3. Barb Hite at 3:11 pm

    I cant get a Fentenyl patch that is 100mcg I can only get 50 mcg, when im lucky. How am I going to get ketamine? I know its a scheduled III drug and dogs and horses can get this medicine b4 I can get it. I have to beg to get 50 mg of trazodone so I can get an extra 2 hours of sleep a night. I guess the doctors don’t believe I can’t sleep at night because of the pain I have. I am on amitriptline, trazodone, diazipam and my epilepsy medicine at night and I guess they figure that should knock me out, but it doesn’t. The pain is excruciating.
    Ketamine would be great. Sleep would be great. To sleep and have no pain for 8 hours I would die for…

  4. Renée Hernandez at 3:42 am

    I have had CRPS for 18 years.I am also a RN (no longer able to work). I have had one of the worse flares in many years that started last October and finally after a ketamine infusion April 14 has put the monster in its cave. For many years I took all the drugs the neurologist prescribed me opioids,anti-depressants, anti-seizure, benzodiapims etc. I was a barely functional human. I stopped all of the drugs and started my own physical therapy routine ( walking,yoga,water exercises) diet, increase Vitamin D, and realize also that sleep is incredibly important. For me I felt the effects of narcotics and it did make me more sensitive to pain..for others it seems to help. I know how desparate this horrific pain can make a person become..we so need advocates and understanding. It would be good to form a patient advocacy group that focuses on legislation and especially the insurance companies to cover the medications ( such as ketamine) and therapies ( including alternative ones such as acupuncture) that are helpful.

  5. Gina at 7:07 am

    I am 29 years old and developed CRPS after a fall which injured my left arm and wrist. When the pain just became constant and not consistent with my injury, I thought I was over feeling, being a hypochondriac. I was never diagnosed until about 6 months later. It’s been a year and a half since then. And I have tried a wide range of treatments, topical, alternative, the Lyrica route. I’m just tired. Tired of people telling you there must be something you can do. And asking me why, when I say I’m tired physically. Do what works for you. We all react differently. I once had a friend get on my case because I had stopped taking my medicine. I didn’t like how they made me feel. And so on my own personal advisement, I went without them. When my doctor finally checked in with me, I told him I hadn’t taken Lyrica or the anti-inflammatory, or the codeine for months. Then he said, good. I could have had liver failure for the excess of drugs. Sigh. Do what works for you I say again. Listen to your body. Someone also told me that I should stop reading all this CRPS stuff. Where else though am I going to learn about what’s going on with me. My own doctor only began to learn about this condition after another doctor diagnosed me. Do what works for you. I go to the beach as much as I can. I take showers and baths. Water is so helpful to me. Do what works for you, and don’t let anyone give you any sh**.

  6. Susan Diamond at 6:17 pm

    We love Dr.Chopra in Ohio! He and our CRPS experts here feel the same about opioids and this disease. Causes hyperalgesia for many patients. Ketamine, LDN and soon, Neridronate may be our top three effective meds.

  7. Elle at 7:41 am

    Dr. Chopra’s YouTube Videos helped me save myself, when my doctors offered me little.

    After I took low dose naltrexone, per Chopra’s green lighting it on his videos, within a short period of time my CRPS symptoms lessened and I started to walk again. Opioids do work to dull the pain, but they are not the answer. LDN is. I did not want a lifetime of pain management medications, I wanted something that got my body to heal itself-LDN did this for me.

  8. Barb Hite at 2:42 pm

    I’ve had chronic pain for over 13 years and have excruciating migraines and dad and fibromyalgia. Now that being said I am a patient that has 14 different anaphylaxis allergies, not just to pain meds but also depression meds and 6 different antibiotics. When the pain gets so bad I don’t want to live anymore it’d time to go to the ER. ER looks at my allergies and ASSUME I’m there for narcotics to make me “high” instead of getting me out of pain. It’s a no win for me, and by reading different opinions not just me but all chronic pain patients get “screened”.

  9. Donna at 5:55 am

    Dear Mr.Coghlan,
    Speaking for myself, I am impressed that Dr. Chopra has devoted much of his time to CRPS, and is advocating for so many that suffer. The disagreements stem from the comment of “Never take opiates” and “opiates do not work”, when clearly for some, they do (for whatever reason). Imagine being a CRPS sufferer who has looked for help for years only to be labeled a drug-seeker. And when placed on an opiate, you feel even the tiniest bit of relief, only to read what Dr. Chopra has said. I am not a CRPS sufferer, but I can understand the anger.
    Also, so many of us are in danger of losing our pain medication, to read such a comment made me even more fearful.
    Emotions are running high, and pain sufferers have so much at stake.
    Thank you for the service you provide, and I sincerely hope that it continues as an advocacy for those in pain and the caregivers who often feel helpless.
    Respectfully Yours,
    Donna Skelton

  10. Donna at 5:29 am

    Wonderfully said, Claudia. Individualized care, along with educating everyone. Thank you!

  11. Julie at 4:58 pm

    I have RSD /CRPS1 l was on opiates my Doctor the bright spark he is said opiates are not the answer l want to take you off them and you will feel so much better so l agreed .
    3 months later l was planning my suicide l was referred to a RSD Doctor who put my straight back on to opiates and saved my life now 10 years later with the help of my opiates l get to start a new day still in a lot of pain but not as bad as the pain l did have that caused me to go down the path of suicide so the Pratt the wrote this is just that .you said quite clearly all patients are different and that’s true but don’t you dare say that taking opiates away from people whom opiates is there only way to get through every day but then it darned on me l now know why as you see patients with chronic pain a burden to society l mean it takes 4 hours to diagnose someone with chronic pain and as you rightly say all the patients that can be seen in that time and the money you could make .so l believe anyone with chronic illness get tough tell your doctor what helps and what does not but if you know opiates work for you under no circumstances let anyone talk you out of opiates especially if that’s the only thing that works .
    I mean of course we would all love Ketamine then put that on the insurance and see how many thousands and thousands of people that will sign up for it and for you people that have coped without opiates great good for you the o ly thing that comes to mind is did you really have a chronic illness to begin with l beg to differ.
    Also a brilliant point to be made you want chronic patients to have the help the so deserve then get RSD and chronic illnesses on MMJ clinics so we can have treatments that help and MMJ helps chronic pain patients.

  12. RSD Warrior at 4:24 pm

    All those who are misinformed regarding opioids need only read on Wikipedia, plain as day – NOT for long term use. Maybe some lash out cuz they are in denial and don’t like hearing the truth. So much misinformation out there, the patient must be their own advocate, no one cares or should be more invested in yer health n body than you yourself the patient. Sad to see Dr Chopra spreading awareness n getting bashed by ignorant people who speak before doing the research. Who that has commented has more experience/studied more than Chopra?

  13. Claudia at 12:33 pm

    I have been dealing with RSD since 94 and I was never considered a Drug Seeker till I moved to Florida. I moved her because I couldn’t take another winter in the cold. My PCP labeled me a drug-seeker on my first Doctors appointment. She heard of RSD/CRPS but never read up on it nor had a patient with it. When I seen my diagnoses I was really upset and made another appointment with the Doctor and brought her a file that I had on RSD/CRPS information including DR Hooshmand Puzzles. I also brought her a file from my PM Doctor up in Pittsburgh, which listed all of my treatments and results from 1994. We went over some of the information and I left the two file with her. A few weeks later I got a call from her that she is removing the Drug Seeker diagnoses from my records, and she said that she learned so much from what I brought her and from my own records of treatments that didn’t work. With her help and a dietitian we did a blood test and all the vitamins and minerals that I was lacking we addressed, we also cut out processed foods and went Gluten Free. I also started taking short walks every with my dog for Vitamin D. I was able to cut my pain meds in half and feel so much better about myself. I still go though flairs but they are not as bad as before. Each one of us need to work with our Doctors and find a plan on treatment that works for you as a individual. No two people are alike with Symptoms of RSD/CRPS and One Treatment doesn’t fix all. We with RSD/CRPS need to be our own Advocate and need to work out a treatment plan that works best for us with our doctor. I found out by just going into the Dr and telling them I had RSD,I was diagnosed as a Drug Seeker as the Doctor didn’t have any of my past medical records and she didn’t know me from the last person she seen. I don’t agree with Opiates are bad for us, but we need a game plan in place beside being on Narcotics,

  14. Dave at 6:05 am

    The NPR provides a very vital service to people in pain and the public by allowing free exchange of ideas, some catharsis, and important updates on pain care.
    It is understandable that many people in pain are angry, disappointed, hurt, etc. It is well know our society is not meeting their needs. Though the health care industry has tried to convey that they “get it” that pain care is not adequate- people in pain remain unconvinced.
    Real reforms have not been put in place to fully address problems in pain care. And the war on drugs is seen as the war on people in pain. Health care providers still refuse to have education in pain care- and when they are required to do so- they chose the narrow path of approach with minimalistic education that is biased toward preventing substance misuse.
    People in pain don’t have a voice in the education of providers, the treatments they provide- and often have difficulty accessing treatments-not to mention the out of pocket expenses are often too great.
    Providers should understand the terrible situation people in pain have been placed in- like a cornered animal with no choice left but to fight. They should welcome any comments as grist for their mill in understanding and being responsive to the needs of people in pain. After all- who is our health care system for anyway?

  15. Ed Coghlan--Editor at 8:35 pm

    I would suggest that some of our readers need to take a deep breath.
    Dr. Chopra, who has studied CRPS and is an expert on the disease, made his comments honestly and straightforward. To attack his credibility–or anyone who might argue that opioids are not the best way to address chronic pain– makes you sound shrill. It’s a point of view, in this case an informed one.
    We have tended to be very liberal about the comments that we publish from the readers. Quite honestly, this string of reaction has me thinking about revisiting that policy.

  16. Tracey at 3:53 pm

    I get so tired of reading that prescription opioids “don’t work” for this or that, as each pain patient is different. They’ve been saying the same thing about fibromyalgia. Guess what? I’ve been on a very weak opioid for over 10 years. It is the ONLY medication that blocks enough of my pain so that I can remain active, including establishing a daily routine of exercise and stretching. Humans are not all the same, even more so when it comes to medical treatment. What works for one might not work for another and vice versa. Of course, there needs to be more research with chronic pain diseases, but quit making people suffer in the mean time. If a prescription opioid works for some, who am I (or you) to try and deny them relief? Same with medical marijuana, physical therapy, acupuncture, and other alternative pain treatment options. Quit thinking that all of us are one and the same.

  17. Penny at 3:47 pm

    I would love to meet this man. I have had CRPS for 2 years and don’t take opiods and don’t want too.

  18. Dr. Mark W. Helfand at 1:41 pm

    I am a doctor with CRPS and Sheryl Donnell knows more than Chopra. I’ve had CRPS for over 15 years and have tried almost every treatment except Ketamine and Hyperbaric Oxygen. I was in a coma for 8 days after having an MI (myocardial infarction or heart attack) and don’t want to do that again. I’m not convinced of the oxygen. If it wasn’t for opioids, I wouldn’t be able to function. I tried going without opioids when the pain specialist that was treating me decided I was addicted to the opioids he prescribed. He forced me into a rehab program but before entering he increased the dosage of Fentanyl in my intrathecal pump. That convinced me to seek treatment elsewhere. Besides suffering while in rehab, it taught me that the side effect of getting “high” was detrimental, not the opioid. I am currently being treated by a doctor that listens to me and knows my past. I am on high doses of Fentanyl. Due to the slow increase in dosage, I have avoided the detrimental side effects. If it wasn’t for the opioid, I would never be able to care for myself an/or write this letter. The only thing Chopra was correct about was that each patient needs their own individualized treatment.

  19. Donna at 11:41 am

    Sorry for the post with the awful auto-corrects. Don’t even get me started on this awful phone and my carrier!

  20. Donna at 11:23 am

    Well, I see the anti-opioid crowd jumped on this doctor’s sweeping generalization that CRPS patients should not take opioids, despite patient’s who have had success with that very treatment. I mean, really, you want to deny this treatment due to personal belief and skewed statistics? How about someone take away a diabetics insulin because someone believed that diet alone is the only answer? If opioids work for a CPRS patient, then they should not be hindered in receiving that treatment.

  21. Sheryl Donnell at 9:33 am

    This is the most Pollyanna letter I’ve ever read. First, when you go into a doctors office as a knowledgeable patient with chronic pain (and I have had CRPS for 9 years) you are immediately labeled a drug seeker, ever when you specify you do not want any pain mefication, just answers. Opiates? They do work, and for about 50 to 75% of CRPS patients. Doctors love to say they don’t help however, CRPS is a syndrome that I have repeatedly been told is more than likely many different diseases that have similar symptoms. And in the patient population we have all long known what works for one may not work for another. There is a huge amount of trial and error in treating this syndrome. For some Ketamine is the answer . Others it does nothing. For some Spinal cord stimulators work great, others they do nothing. Pain pumps, same. Every medication, same thing. We are not a one approach fits all disease. If we were, researchers would have likely made more headway by now. So. Doctor, please stop speaking in absolutes, start looking at what works for your patients. And start asking your patients about their experiences when they let doctors know they are knowledgeable. It does not help us. This is why we have the problems we do. Doctors like to think they would want their patients to be well informed and knowledgeable but in fact when presented with one, they get their dander up and feel threatened. Real world versus Pollyanna view

  22. K. Rhoma at 9:11 am

    Did Dr. Chopra offer alternatives to opioids to treat the pain? I respect his opinion and his willingness to take a stand that is not conventional. I’m assuming that speaking about physicians unwilling to spend a lot of time with patients because she/he can make more money with something simple, although true, will raise some eyebrows.

    Physicians can’t afford private practices anymore. In my state where I’ve been a nurse for 30 years, the predominant health care systems who employ most of our physicians allows 7-10 minutes per patient. The same with large physician owned groups which is driven by a business model to make money, not patient care driven.

    Then there are the insurance companies…

    My treatment plan was dictated in part by a protocol designed by my insurance company! I couldn’t try one treatment unless I had tried (and failed) a less expensive treatment first. My pain care specialist actually put his head in his hands while saying “I went to college for 14 years only be told how to treat my patients by someone with a high school education.”

    Dr. Chopra, I love your passion and advocacy for those of us with CRPS and your willingness to go outside the box that may squeze good physicians into mediocre ones. Thank you. I would sell a family heirloom and pay out of pocket to see a physician who would be willing to see me for 4 hrs. and design an opioid-free treatment plan for me. I’ve never been given another option! I hope to be able to read or hear your full address soon.

  23. Cindy Perlin at 7:00 am

    I appreciate the fact that Dr. Chopra discourages CRPS patients from taking opioids, however his data on what percentage of patients who take opioids become addicted (.01%) is based on drug company propaganda that has been found to be criminally fraudulent. Studies since have found widely varying numbers ranging from 3.5% to 37%, depending on the definition of addiction used and the population studied. Also, the recommendation that patients look to medications to turn off the fight or flight response is misguided. Psychotherapy, especially techniques specifically targeting trauma, and relaxation training, especially with biofeedback, are much better options. For more information, please read my book, The Truth About Chronic Pain Treatments: The Best and Worst Strategies for Becoming Pain Free.

  24. Tasha at 6:11 am

    I’m 34 have suffered from this horrible disease for the past 5 years I have full body & a very aggressive form of RSD. How are we supposed to take control of our treatment when most insurance companies doctors hospitals nurses & pharmacies don’t know how to treat us. I agree with DR. Chopra that more research education & treatment needs to be done for this disease. This disease has ripped my body & life apart from the inside out . I have a 5 year old daughter who’s life I’m missing out on because I’m always hospitalized or bed ridden from the pain not being able to eat or drink this disease has ravaged my body. Not to mention how I’ve been treated by people in the medical field who have no idea how to treat me. Ive been told everything from its “Psychological” to “I just want narcotics” something more needs to be done. We suffer horribly everyday this disease is relentless. That’s why I’m dedicating what time I can to try & bring notice & change to this disease no matter if I have to speak from a hospital bed or wheelchair. There’s almost no treatments available to me except narcotics because insurance refuses to pay for anything else. But they have spent millions of dollars for my hospitalizations explain that one to me …

  25. Dave at 5:41 am

    Im glad to see some truthfulness about underpowered medical care for RSD , neuropathic conditions and fibro. However, For people with these conditions to take control of their care- then doctors should work towards more direct access to treatments and diagnostics without the middlemen- doctors, insurers, govt. etc. Also medicine shouldn’t look toward the future of care by looking at the rear view mirror. Medicine needs to make a radical departure from the past-and realize the biomedical model has failed people with neuropathic conditions and fibro. To continue to grow the biomedical model to help people with neuropathic conditions is counterproductive and foolish wastefulness. You have yet to find or create a magic bullet for any painful condition via this approach- and you should realize that things are more and more complicated then you had imagined. And I say to those who wont learn from the lessons of poor pain care- don’t think of yourselves as part of the solution- you’re just wasting time and resources. Try to make a leap of faith to much more divergent approach to these conditions- that’s, of course, assuming that you care enough to make the effort.

  26. Ks at 5:10 am

    Ive got fibromyalgia and opiods r the only thing that allowed me to keep working UNTIL i was forced having one cut out. Since then havent been able to work at all. Idk wh9,comes up w taking a seizure med or antidepressants for fibro these drs all are quacks

  27. marty at 2:38 am

    Excellent article. Very impressed by the doctor. I so wish that more people would listen to him about the opioids. I found this to be so true and it breaks my heart watching people beg for them and doctor bash because the doctors are trying their best to treat people with what they have to work with.