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How to Obtain the Best Medical Care for CRPS

Published on May 14, 2015 under Guest Blogger for RSDSA

Written by Steven Feinberg, MD, MPH Board Certified, Physical Medicine & Rehabilitation Board Certified, Pain Medicine Feinberg Medical Group Palo Alto, CA and Rachel Feinberg, PT, DPT Director, Physical Therapy & Functional Restoration Program Feinberg Medical Group Palo Alto, CA for the RSDSA blog.

If you are reading this, it means you, a friend, or a loved one has been diagnosed with complex regional pain syndrome (CRPS). This article is not about diagnosing and treating CRPS but rather about how to obtain the best medical care for this diagnosis.

There are many good reasons to obtain the best medical care possible for this diagnosis. First and foremost is that early quality treatment has the best chance of resulting in the best outcome. Second, the wrong treatment can actually lead to a worsening of this condition. Third, from a practical standpoint, your insurance coverage may be limited and thus getting the right treatment first which is covered is very important.

There is both good and bad news. We will start with the bad news. Many of you will not have adequate insurance coverage to provide the absolute best care for CRPS. Problematic as well is that even with good insurance coverage, treatment available in your local community may not be ideal or even available. With that said, the good news is that if you will take time to educate yourself about your CRPS condition, you have a much greater chance of getting what you need to get better and to manage this condition.

While some treating physicians may focus on medications and interventional procedures (i.e., injections, device implantation, etc.), and these can certainly be an important part of treatment, the best treatment is approached from a biopsychosocial perspective by an interdisciplinary team of treaters. This means treating you as a whole person and paying attention to both the physical and psychological aspects of chronic pain. This approach involves coordinated medical care with a treatment team, other than yourself and significant others, including a physician pain specialist, a physical and/or occupational therapist and a psychologist.

In this type of biopsychosocial approach, it is critical that the person with CRPS, become educated about the condition and be the “captain of the ship” when it comes to managing medical care. Being passive and leaving it all up to the doctors and therapists just won’t work. The person with CRPS needs to understand his or her condition and how to treat it. That means becoming informed and educated. Whatever therapy is provided, it will not be enough if the CRPS patient doesn’t “practice” what they are taught 24/7 both at home and away from the doctor and the therapy center.

The ideal setting for treatment is where the physician is a rehabilitation-oriented pain specialist and not just a doctor focused on prescribing pills and doing procedures (i.e., nerve blocks, implanted devices, etc.). This means ideally, that the physician works closely with a physical and/or occupational therapist and a psychologist with expertise in treating CRPS. It is always best if they work out of the same facility as a team (this is called interdisciplinary) but even if they are in separate offices, it is important that they communicate and work together as a team (this is called multidisciplinary).

Getting back to the issue of education, while some physicians and therapists feel threatened by an educated patient who is knowledgeable and asks questions – and you need to be careful not to make the treater feel uncomfortable – it is perfectly okay to be educated about your problem and ask questions. High-quality treaters enjoy questions and are not threatened by knowledgeable patients. Questions you can ask include “Have you read up about CRPS?” and “Have you made yourself familiar with the usual medications and treatments prescribed for this condition?”

Here are some other things to consider when you are evaluating obtaining the best treatment for CRPS.

  1. Identify other individuals with this condition in your community to find how they have done with their treatment and who they have treated with. Does their physician, physical therapist and psychologist listen to them and provide effective treatment? Are they being provided education about the condition and a good home program to expand and work on what they are learning when they’re in therapy?
  2. Tell your primary care family physician that you are familiar with the diagnosis and want to make sure you are being referred to a pain physician who is rehabilitation oriented and not someone who focuses on prescribing medications and injections and other invasive treatments.
  3. Interview the doctor and therapist to see if they are truly familiar with and experienced in treating CRPS. Is the medical care provided truly coordinated between the various disciplines?
  4. Ask the physical therapist how commonly they treat people with CRPS and if they are familiar with some of the more recent graded motor imagery approaches such as mirror box therapy.
  5. If there is no physical therapist in your community that consistently treats people with CRPS, ask to treat with the therapist that sees the most people with chronic pain. Many of the same pain management skills can be applied to managing CRPS.
  6. As you speak with the physical therapist, see how willing they are to provide full answers to your questions. Quality CRPS treatment requires a lot of education and your therapist should be eager to provide you with the answers to your questions.
  7. Many psychologists deal with symptoms like depression and anxiety, but ideally, the psychologist needs to be trained in pain management. It is very important that they use cognitive behavioral therapy (CBT) as part of their therapy as CBT has been found to be highly effective for managing pain. Cognitive behavioral therapy is a form of psychological treatment that focuses on examining and changing the relationships between maladaptive or faulty thoughts, feelings, and behaviors.

The RSDSA website is a great source of information. Other sources of information are The American Chronic Pain Association and The ACPA Resource Guide to Chronic Pain Medications & Treatment.

Please consider making a donation to RSDSA today!

63 Comments

      2. Barb

        Do you have any physicians in or near Cincinnati, Ohio?

        I developed CRPS, after a a TKR, before the diagnosis, I was told I first needed a THR, when that didn’t help, the diagnosis was my spine.
        After a spinal fusion, still no help. Instead these surgeries and all the other physical treatments, injections, needling, nerve blocks, etc have made it worse.
        Any direction for help would be appreciated. I have been told there no one here who treat CRPS

        reply to comment →
  3. steven rosa

    i had TKR 11 months ago & have been told I now have CRPS, I have tried nerve blocker, ephipural, and general pain medication, nothing is working . Is there a treatment center in NEW JERSEY. I have heard MAYO in FLA. is good and I am willing to travel. HELP PLEASE

    reply to comment →
      1. Brenda

        I saw Steven’s email. I have CRPSII, I had had a wonderful pain management doctor years ago but he is no longer practicing. I have learned that not all medical professionals are familiar with my condition. Can you please send me the NJ list. Thanks for your assistance.

        reply to comment →
      1. Chuck Bye

        Please send list of best CRPS treatment centers. Grand daughter is 16 and lives near Minneapolis/St. Paul, but we live near Ft Myers, Fl. where she can travel. Mayo in Rochester, Minnesota is not good for this treatment.

        reply to comment →
    2. Lisa

      Hi Please send me a list of CRPS specialists in the Boston/ RI area who can diagnose and treat. I am going on 4 years of living with chronic pain. I have been diagnosed with maybe CRPS by two doctors, maybe myofascial pain syndrome and maybe fibromyalgia. I am 30 miles west of Boston.
      Thank you!

      reply to comment →
  9. nickalus1976@gmail.com

    Hi I have CRPS and my DR just put in a spinal cord stim it’s a workman’s comp. injury and Dr. but I think he just rushed in doing so and really will not listen to me. is there any specialists in my area? I live in Whiting Indiana. but really close to Chicago IL. also
    Thanks for your time

    reply to comment →
  13. Randi Spellman

    Hi I am looking for a full comprehensive center to treat a 23 year old near Denver. We are willing to travel if neccesary. I just really want a place that has it all under one umbrella
    Thank you

    reply to comment →
  14. Laura

    Please, help me find a CRPS/ pain management doctor in the Philadelphia area for my daughter. Her doctor just doesn’t understand CRPS. She had a DRG stimulator I planed 2 weeks ago. I am desperate.

    reply to comment →
  15. dianna

    I’m ditching Kaiser insurance to go with a PPO. I received CRPS diagnosis in September after 3 years and 4 hospitalizations being treated like a lier and drug addict (super fun).

    I’m desperate to find a CRPS Pain Management doctor with some compassion who can help me lower my pain from I wish I was in a coma (or pushing daisies) to I wonder if I’m being stung by a bee.

    Do you have any recommendations for the Los Angleses area?

    Thank you for your time.

    reply to comment →
  16. Melissa

    My brother is dealing with CRPS since a TKR in May 2019. Looking for a specialist in Western PA area. He has had a sympathetic nerve block & it didn’t result in any change. He has recently had arthroscopic surgery to remove scar tissue on Nov. 28,2019 & the orthopedic surgeon believes he has a combination of CRPS and synovitis. We are looking for a specialist to try to treat this. His knee has already filled up with fluid and was drained on Dec. 18 which is only 2 weeks after the arthroscopic surgery. Any recommendations for the Pittsburgh area? or Cleveland Clinic?

    reply to comment →
  18. Richard

    Hi, My wife has been dealing with CRPS now for over 3 yrs. I am looking for the utmost experts in this field. I am willing to take her anywhere to get her some help. We are located in Oregon and she is under a pain management contract with her pain specialist and also had a device to block pain implanted in her back. She has seen some relief from the implant but unfortunately it has caused other issues as well. To the point that she is seriously thinking of having it removed. Any info you have will be greatly appreciated. Thank you

    reply to comment →
  20. Judy Gusmano

    I developed CRPS after breaking my left hand and being put in a cast in March 2018. My hand doctor recognized my condition of CRPS when I started showing all the symptoms and immediately sent me for occupational therapy so luckily I never went past stage 1 of CRPS. It took me 7-8 months to start feeling better.
    I just broken my right ankle on both sides on Christmas a few days ago while I was visiting relatives in NJ and was put in a cast after the orthopedic surgeon saw my x-rays. He said I may need two plates on each side requiring surgery if this does not work and I fear my CRPS may travel to my right foot/leg because of this injury. While I was in NJ my leg collapsed on me because I also need a hip replacement surgery and I do not have an orthopedic doctor where I live in Lantana (Palm Beach County) Florida with knowledge of CRPS and I have now returned home to Florida. The doctor in Nj said I must find an orthopedic doctor in Florida experienced with patients that have had CRPS in a limb. I need to have my seriously fractured right ankle checked within a week from December 25th 2019. Can you please recommend a orthopedic surgeon I can feel confident about because he understands the special precautions he must take for a patient with a prior CRPS in another limb and has the experience in treating a broken ankle on both sides as well as a hip replacement with osteoarthritis (bone on bone condition and a bone spur). I would be very grateful for a recommendation. Thank you for your time. Best Regards, Judy

    reply to comment →
  21. Donna

    My sister has CRPS,lymphedema and a severe infection in her leg. The doctor recommended Sympathectomy as the only option for treatment. We are researching doctors that do this procedure and the success rate. Any advice or suggestions would be welcome.

    reply to comment →
  23. Michelle Sandidge

    I can find a doctor in the Springfield Illinois area that will diagnosis my foot issues after having foot surgery and seven different pieces of metal placed in my foot. Surgery was one year ago.

    thank you !

    reply to comment →
  25. Jenny

    In addition to my last request – my friend received a diagnosis of CRPS after a surgical procedure in 2014. In 2016, she wound up with a spinal cord injury after another surgery to help with the CRPS and was later diagnosed with dysautonomia. This second surgery did not use ketamine, btw. Her most recent issue has been autonomia dysreflexia (she’s been experiencing an impacted colon and bladder retention most recently with dangerously high high blood pressure levels). I don’t know if these conditions are related given that two entirely different surgeries seemed to trigger them. Should she be seeing two different experts who deal with each condition and work together? Or Will a CRPS expert alone know how to handle her dysautonomia issues and the life threatening issues it may be causing? We really have no idea where to go from here and are not really receiving any plan of action from the medical community near us. I fear that her issues are becoming life threatening, but with so much trauma from post surgeries and dismissals from ERs, she is reluctant to address the symptoms that are now developing. I’m hoping some expert suggestions from this site can follow lead her to a plan of action on how to treat the root issue and the resulting issues from both.

    reply to comment →
  26. Steven

    I am a physician in Birmingham, Al looking for the best place to evaluate and treat my family member, 47 y/o otherwise healthy female, 4 weeks out from a mid-toe fracture, now with progression of symptoms compatible with CRPS. We can travel if needed. We would ike to start appropriate treatments soon given evidence it can be beneficial. Thank you.

    reply to comment →
  27. Eileen

    I’m having difficulty finding a physician in the San Diego CA area (recently moved) to take over treatment of my 7 year CRPS (3 limbs, heart, gastric) … who will accept MEDICARE. Any leads would be greatly appreciated! Thank you!

    reply to comment →
  29. Carole

    Are there any physicians who treat CRPS in New Mexico? If so, can you please provide me with a list of those physicians? Can you also provide me with a list of physicians in Central Florida also? Thank you!

    reply to comment →
  31. Heather

    Another emailer hoping you can help. I was after a year diagnosed with possible having crps. Do you know of any specialist around NY state? It has taken me a year just to get a maybe and I have been to ever avenue locally that I can think of and my symptoms are getting worse.
    I would really apricate it
    Heather

    reply to comment →
  35. diane kandt

    Looking for treatment for son who was diagnosed with crps – we are in denver area. Son was injured on 12/24/2018 on duty police officer have been dealing with workers comp – he needs better help it is getting worse

    reply to comment →
  36. Stanislaus

    Hello. Toward the end of last year I was diagnosed with CRPS. PLEASE PLEASE PLEASE send me a list of doctors that specialize in this disease. I live in Orlando, Florida. The pain and deterioration in my wrist, fingers, hand, entire arm is getting worse. I have also began to feel some of the ‘zapping’ in my other arm. Thank you in advance!

    reply to comment →
  37. Barb

    I have CRPS,Migraines & TOS,is there a doctor who can help me ,in the Green Bay,Wi. area. I currently see a pain specialist for CRPS & another for migraines.I’ve had numerous surgeries for TOS.

    reply to comment →
  38. Robin

    May I please have any information about physicians that treat CRPS in South Central Michigan (near Ohio/Indiana borders, as well as Ann Arbor and Lansing). I am also looking for a 5 day ketamine treatment clinic. I was blessed to be able to try outpatient, 1 day treatments. They helped, but it was not enough Thanks so very much!!

    reply to comment →

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