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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!

229 Comments

  1. Heather Smith

    My sister has been diagnosed with RSD and she is suffering greatly, can you please email me a list of drs that treat this in fl; Orlando area and Boca raton area thank you!

    reply to comment →
  2. Lexi

    Hello,
    Post left meniscus surgery I have developed severe CRPS that is rapidly spreading.
    I’m 28 and am losing hope.
    Any info is appreciated for Pittsburgh Pa area.
    Wishing everyone suffering some healing or peace.

    reply to comment →
  3. Cassie D.

    I need a specialist in the Hampton Roads Virginia area? Does anyone know someone my doctor is not super familiar with CRPS and its spreading so I need someone that understands.

    reply to comment →
  4. Scott

    My wife was recently diagnosed with CRPS. I’m wondering if you could please send me a list of recommended doctors in the area of Colorado, Idaho, Nebraska, South Dakota, Wyoming, and Utah? Thanks for what you do!

    reply to comment →
  7. Rosella

    Hi, I have been diagnosed with CRPS and not and Yes and no and yes. I have been in pain for three years. I have done everything. Nerve blocks, ketamine, gabapentin. I have seen two of the top doctors/anesthisiologist in NYC and they disagree with each other. One said definitely CRPS and one said nope. Have been to other doctors and they are on the fence. In the mean time the back of my foot is all red and burns. I am ready to leave and get neridronate treatments overseas. One doctors said its a scar tissue pressing on the nerve and would do surgery Im petrified of this because this all occurred because of a surgery not needed and not explained gone horribly wrong.

    Do you have any top doctors in this field in NYC or anywhere I am willing to travel for a specialist who can help or give me the confidence of a diagnosis.

    I’m at the end of my rope and so depressed.

    reply to comment →
  8. Camille

    Hi Alexis,

    I have had CRPS / RSD for over 7 years which developed after the spine surgery recommended a year after the MVA that caused me multiple physical injuries.

    I have moved & have to start over again & find a new team of doctors to help me with multiple issues.

    I have been having difficulty finding physicians who understand CRPS / RSD, especially Neurologists in CA, and if necessary, I am willing to work it out in order to see doctors within my insurance network in states where some of my family members reside such as Maryland & Ohio.

    Please send me CRPS / RSD physician lists for California, Maryland & Ohio.

    Thank you very much for your help.

    reply to comment →
  9. Nicole Lankford

    I was Dx with CRPS this past November. Per my own request I just started a program of PT and seeing a psychologist that work together. I already had a sympathetic nerve block that did not help at all. I am an active person and can no longer participate or engage my family in any active outdoors activities and barely even in our own home. I also can no longer work to help support the family as my job is very physical. I just changed Primary MD because my prior MD told me he does not believe in CRPS. Seriously! I am not convinced my new MD really knows what to do with me and has not referred me out except to have a 2nd ortho consult which honestly is pointless. Please send me a list of any MD’s that might help in or near San Diego, CA.

    reply to comment →
  10. Stephanie

    I am going to be moving to arkansas and need to find a doctor. Could you please email me a list. We will be near Mountain View but am will to travel for the best care possible. Thank you.

    reply to comment →
  13. Scott Proudlock

    I was injured in 2014, had two surgeries to repair a distal biceps tendon, first surgery failed, nerves damaged with the second surgery. CRPS devolped shortly after, but took numerous Docotrs and about 2 years later before a diagnosis of CRPS. I have lost complete use of my arm and hand, it has spread to the foot on the same side. The pain is excruciating, I can’t tolerate the cold Michigan weather, and we are in the process of moving to TN. Can I please have a list of physicians/ Specialists in Southern Middle Tennessee, near Lawrenceburg, TN, or even near Florence or Decatur, AL?

    reply to comment →
  14. Alysia A

    Looking for CRPS specialist in NY, NH or VT but will accept anywhere in New England (Massachusetts, Maine, NJ, Rhode Island). Been going to Dartmouth for years but they haven’t done anything for me the past year.

    reply to comment →
  15. Stephanie

    My son was recently diagnosed with rsd. We have been searching for knowledgeable doctors in our area. If you could send me the list, I would greatly appreciate it. We are in the Mt Airy, Winston-Salem, Charlotte area of North Carolina. I have no issue with driving a distance for the best care possible. Thank you.

    reply to comment →
  17. Amy Barwell

    I was just definitaly diagnosed with CRPS yesterday, after all other possibilities were ruled out. I was wondering if any of you knew a good physician, and/or pain specialist, specializing in CRPS in the Atlanta, GA area. If not, a physician in Florida, Alabama, or North Carolina area would be okay too I guess. I appreciate any information and advice that anyone can give me as well. Thank you.

    reply to comment →
  18. Shani M

    Please send a list of specialist in the New Windsor NY 12553 area. Requesting someone who really specializes and not just someone who will give only medication for temporary relief.

    Thank you so much!!!

    *Had to correct email address.

    reply to comment →
  19. Alexis Davis

    Hello everyone and welcome to 2021. Please be advised that we are responding to requests for physicians lists in this comment section, and others on the website, by emailing lists directly to those who comment. Please ensure your email address is spelled correctly and that you identify the state you live in when leaving your comment. Thank you!

    reply to comment →
    2. Tom McFall

      My son is in Charleston SC and has been diagnosed with CRPS and is in excruciating pain. Please forward Doctors/therapists that specialize in CRPS in the South Carolina market. Thank you!

      reply to comment →
  23. Teresa

    Do you have a list of Dr’s or Treatment Centers for Iowa. My 15 yr old has been battling CRPS in her Right foot & ankle for 2 years. Just getting the diagnosis What treatment would be recommended or not recommended for a 15 yr old? They are suggesting a spinal block or Hypobaric treatments. IS it worth the money if not covered by insurance?

    reply to comment →
  24. Kathleen McCrea

    Hello, my 12 year old sister was diagnosed with CRPS this Novemeber and we finally saw a neurologist today, who recommended we go to a speciality clinic. We live in Pensacola Florida. Would you please give us some recommendations? Thank you!

    reply to comment →
  25. Ron

    7weeks ago I suffered a comminuted fracture of my distal radius. Since I have experienced burning and neuropathic pain and numbness of my hand. I also have been diagnosed with Charcot Marie Tooth, type 2. Any centers in or near SC that could evaluate and treat. Thanks

    reply to comment →
  26. Dominique

    Hi, we are in Pittsburgh and would greatly appreciate a list of either neurologists or physiatrists specializing in CRPS. We don’t know where to turn. They have to accept UPMC insurance.
    Thank you and God bless you.

    reply to comment →
  27. Natalie

    Hi! I am a 24 year old post-collegiate runner dealing with crps in my feet after multiple stress fractures. I am a physical therapy student and have taken many of my professors’ advice for treatment but unfortunately nothing is working anymore. I live in Louisville, KY. I would love some advice!

    reply to comment →
  32. Kate

    I am currently in Ohio, but I am based in California and have more family in Virginia. I am willing to go anywhere to nip this in the bud. Any suggestions for doctors? Ohio is very, very not understanding about pain. I tried to get into a pain doctor in May and he reported me as a drug seeker when I was calling about nerve blocks. He never even found out why I was calling. It is still early. Please help.

    All best,
    Kate

    reply to comment →
  38. Ellen Keelan

    My sister has suffered with CRPS for years
    and is desperate for relief. Can someone please, please, please offered a some suggestions and a list of doctors in NJ and the surrounding area.

    reply to comment →
  40. Sara E. Bliss

    I have had a CPR sa-4 14 years and my general practitioners isn’t drop me because I have missed other appointments that they have set up for me or rescheduled them due to not feeling well being sick my RSD flaring up or not even having gas to get to the doctor’s appointment so I am looking for a new general practitioner that knows about complex regional pain syndrome in the Tully or Syracuse area of New York

    reply to comment →
  41. Amy Druckrey

    Please send me a list of doctors in my area that are knowledgeable. I have been dealing with this terrible disease for 2 years and pt twice a week psychotherapy once a week and doctors visits ER visits you name it katamine infusions.

    reply to comment →
  44. Gary Kinsey

    Seeking help for my daughter. CRPS symptoms since 2018 and it just got labeled this summer. She has had multiple Ketamine infusions with no relief. She is only 20 years old. Tried to set up an appointment at the Mayo Clinic in Jacksonville and was told they could not help her. Can you recommend anyone in the Southeastern PA area that I can take her to? I checked all the major hospital web site like Penn and Jeff and CRPS is not even mentioned. We are willing to travel so please send me info on the place that has the most successful treatment results. Thank you

    reply to comment →
  53. APalma

    Are there any CRPS certified physicians in Phoenix? Rheumatologist gave differential diagnosis of CRPS and I have an appointment with a neuromuscular neurologist in January 2021.
    I have every symptom related to CRPS so I’m confident that this will be the final diagnosis. I also have several other pain conditions such as rheumatoid arthritis, poly arthritis, poly myalgias, peripheral and small fiber neuropathy, degenerative disc disease, and IBD.
    I am a post liver transplant patient (7 months) and I believe that the onset of CRPS is a direct result of a negligent nurse.
    My transplant went as perfect as anyone could have imagined. I got the perfect liver and I was the last transplant before my transplant center stopped further transplants due to COVID. My surgery took 3 hours and I was expected to be discharged on the fourth day. As expected, on the morning of the fourth day, I was told to get ready to go home. I felt wonderful and better than I had ever felt in my life.
    The nurse came in at the end of her night shift to finally empty my drain bulbs from the fluid in my abdomen. I had been sitting in bodily fluid for over two hours and she realized my sheets needed to be changed. She wasn’t happy. As I was preparing to get out of the bed, I asked her to please check that my drain bulbs were attached to my gown. She said they were even though she didn’t look. I told her that I didn’t believe they were and again asked her to check. She was very snippy and annoyed and said that they were. Again, I told her that I didn’t believe they were and that they had fallen before when I had a part of my kidney removed due to a tumor. I told her how painful it was and that I didn’t want that to happen again. She was angry now and yelled that they were that she could see that they were. I wasn’t able to check for myself because I was sitting on the bed and asked her to physically check. She acted like she did but she didn’t. I believed she did but sure enough when I went to stand up, down went the drain bulbs causing me to rupture.
    The pain was excruciating and immediately, I knew something was wrong. I could literally feel something in my body change. It’s indescribable. The trauma team along with my surgeon rushed me to the operating room just like you see on TV. I could see my vitals dropping fast and the surgeon and and anesthesiologist kept slapping my face and legs and kept yelling at me to stay awake until they put me to sleep. Sure enough I almost died and sure enough, two months later CRPS kicked in. it is the worst imaginable pain a person can endure as you all know. I’m desperate to find a provider in Phoenix who is CRPS certified. Any help would be greatly appreciated.

    reply to comment →
  54. James

    Greetings,
    We live near Cleveland Ohio. My wife has been suffering with this for years. Her quality of life is very low. Due to the opioid issues, the pain management doctors refuse to give her any more opioids and everything else they have tried does not seem to help. She already has a stimulator implanted in her back, but the CRPS has spread to half her body and the implant does not cover it all. Already getting monthly low dose ketamine infusions but they don’t seem to help anymore much either. She wants to try medical marijuana, but the pain management doctors won’t touch it. She can’t try it while in their care since they do random drug screenings and she does not want to get kicked out. She is losing hope of any relief and when she flares up, there is nothing that helps. She just wants it to end. NEED HELP!!!

    reply to comment →
  57. Danielle Doolittle

    I have been diagnosed with CRPS since March and I live in Wenatchee Wa., and I am finding that there are not many doctors here that know what CRPS is, could you send me a list of professionals for the state of Washington? Thank you

    reply to comment →
  60. Jody V

    Had wrist surgery due to Fx 8/20. Now have all symptoms of CRPS. Trying to locate specialists in Atlanta Ga, anywhere in Ga or northern Florida or Southeastern Tennessee. Please help.

    reply to comment →
  61. Jody

    Had wrist surgery 8 weeks ago and now in early stage of CRPS. Would like someone who specializes around my home in Kennesaw Ga. When researching I cannot find anyone that sounds 100% knowledgeable on this. Would love a listing of help around me Thank you.

    reply to comment →
  62. Carmen

    Is it possible to send me a list of the best doctors in the St. Louis area. But honestly, I am willing to travel anywhere in the US for the best doctor. I have had CRPS in my foot for 4 years. I have been miscerable. I need help.

    Thank you for any help.

    reply to comment →
  64. Jennifer L Johnson

    I live in Ogden Utah, contracted upper right extremity CRPS 4 years ago… I just found out that a screw in my ankle needs to be removed it has come out and I am afraid of going into another surgery and potentially spreading the CRPS… I’ve met a lot of doctors and physical therapists that say they familiar with CRPS but in all actuality they’re not. Please help me in finding an orthopedic surgeon knowledgeable of CRPS, that will take precautions to not spread my CRPS.
    Thank you

    reply to comment →
  68. Karah

    I live in a small town in nc I have been getting treated by my family physician up until this point but she has left the practice. I need to find a Dr in my area that is actually knowledgeable about CRPS. Can anyone recommend drs in the area?

    reply to comment →
  69. Inger

    I live in Southeast OHIO. I have had CRPS for over a year. I have been treated by a pain management doctor and have a stimulator in. It is very hard to find a PCP that knows about CRPS. Any hope that someone can let me know if they know of anyone

    reply to comment →
  71. Karen

    Can you please help me find a new CRPS doc in Denver proper-ish? I’m moving in with my son, so I’ll be losing my wonderful doctor in Colorado Springs. I really need a doc who understands that CRPS signs like swelling and color changes aren’t always dramatic after the first year. I also need a doc who will prescribe Low Dose Naltrexone, if possible. Thank you for any help!

    reply to comment →
  72. Cara

    Can you please help me find a new doctor who treats CRPS. My Dr of 30 years died. My new Dr doesn’t believe CRPS can move. I feel very hopeless. I have 2 neuro stims and they give me major problems
    The dr I’m working with seems clueless about CRPS and I’m getting scared. Ty

    reply to comment →
  74. Mike

    Recently diagnosed with CRPS after an epidural bruised my spinal cord. Currently undergoing physical therapy, sympathetic nerve blocks (2 a week) and a cocktail of narcotic and non narcotic pain meds. All combined, yea, a little relief, but not enough to get more than an hour sleep. Any references to CRPS treatment in the west palm beach, Florida area would be greatly appreciated

    reply to comment →
    1. Sean

      Allen,

      I cannot imagine what you and your daughter are going through. We have traversed and treated throughout WI and continue to hit roadblocks. Please shoot me the specialist list if you are provided one for WI. I have already sent a request to the contact email from this site. Also, we may be able provide you insight on our experiences thusfar in WI.

      reply to comment →
  76. Sarah

    I would really appreciate a list of recommended physicians in the Denver metro area. I am at a loss for who can help me get out of the vicious cycle of pain and who is responsive to basic communication.

    reply to comment →
  79. Lisa

    I have been dealing with CRPS since 1998 after a knee injury. Over the years it has spread almost everywhere. Only my arms, shoulders, neck and head have not been taken over. I’m afraid that once it spreads to my arms, my quality of life will diminish significantly. My pain has never been well controlled. I’m looking for a CRPS specialist in the Denver metro area. I was wondering if you had anyone that you could recommend?
    Thank you for your time.

    reply to comment →
  84. Henry

    Can you please send me a list of Doctors In or around the Boise Idaho Area? I have CRPS TYPE 2 and have had it since 2012, I am having a Really hard time finding a Doctor who knows and understands Crps. Thank you for everything you all do for us This website has been a lifesaver either way.

    reply to comment →
  85. Catherine

    Hello. I’ve had RSD for 13 years and was treated as an adolescent but I’m now looking for a specialist/ treatment center in Florida for my mother who was recently diagnosed. If there is any information you can give me, I’d very much appreciate it. Thank you for your time.

    reply to comment →
  87. Miles Weber

    Hello my mother had a knee injury and needs a knee replacement. In the process she has been diagnosed with CRPS. Her leg and foot is losing feeling and her toes are curling under. If you have a recommendation for someone in the West Palm Beach Florida area the could help us figure out the best treatment that would be extremely helpful. Thank you in advance.

    reply to comment →
  88. DeAnn

    My sister had knee surgery 6 months ago and ended up with crps. We can’t find anyone in our area that knows much about this we live in Mill Creek, Wa. It’s close to Seattle. Do you know of anyone she can see. She is really desperate and we are disheartened. Thanks for any information you can give us.

    reply to comment →
  90. Lindy

    Do you have a list of doctors around the Cleveland, OH or Akron, OH area? My previous doctor was wonderful, but my new insurance no longer covers him. I haven’t been able to find a doctor that truly understands this disease, or who will also agree to become my primary doctor.
    Thank you so much for your help!

    reply to comment →
    1. Stacie

      Hi Lindy,
      I saw your post regarding finding a dr in the akron/cleveland area? I’m desperately searching for a dr in this area as well and was hoping you have a referal?

      Thank you,
      Prayers for you and your family. I know how difficult this disease is.

      reply to comment →
  91. Lizz

    Looking for help. Rsd phase 2 bilaterally. Have had it for 16 yrs. Started in left calf and foot and has progressed to bellybutton to toes both side. Can’t find specialist in Nebraska that deals with the advanced rsd. Please help. Im desperate and would rather die than continue life as it is now.

    reply to comment →
  92. Meg Murray

    My 16 year old niece lives in Steamboat Springs, CO. She was diagnosed with CRPS one a year ago and has had 2 ketamine infusions. The infusions helped a little but she is still in daily pain. Additionally, she’s been hospitalized for the past 2 weeks suffering from gastroparesis and has lost 15 pounds. The doctors have inserted a feed tube but she’s vomited it up 3 times already. PLEASE help with any doctor recommendations either in her area or anywhere in the USA.

    Thank you.

    reply to comment →
  93. Len Sadowski

    Looking for doctors that understand and treat CRPS. My daughter (20) has suffered for nearly 10 years and it has been getting worst. Been with Pain Mgmt doc but want someone who understands this best. Please send a list of doctors in a 100 mile radius of central NJ (Matawan)

    reply to comment →
  95. Dan Parker

    We live in North Louisiana but can travel. Please share your recommended treatment facilities in East Texas including Houston, Austin & Dallas ; anyplace in Arkansas, Mississippi, Northern Fla including Jacksonville & anywhere in Louisiana . Your aid will be greatly appreciated

    reply to comment →
  97. Marilyn Pauze

    I fell off a 7’ladder this past Jan. Then the pain began like groundhog day being diagnosed with CRSD. I live in West Coast of Florida, Clearwater area. I’ve read the prior posts and I’m truly hoping you can forward me your list of doctors (or only 1) that can help me. Thank you sooo much!

    reply to comment →
  98. Kay Briley

    I have been living with this since 1989 and it is getting harder and harder to make it through the days. I have my 4th spinal cord stimulator in and the pain center I had went to closed. Do you have a place I might get some help and can you tell me What I can do to get us all some help.

    reply to comment →
  99. Michelle Doheny

    My son was diagnosed with CRPS 3 years ago. What treatment facility or doctors would you recommend? We live in Louisville, KY. Would you recommend The Bridge Recovery Center? Thank you!

    reply to comment →
  100. Corynne

    Hi there. I am on a desperate mission to help my dad who has recently been diagnosed with CRPS. Can you please send any information on practitioners in Florida? We’re in south Florida. But honestly we would even love information on who the top rated doctors in the country are. Thank you for this article and all this guidance!

    reply to comment →
  101. Justin Hodges

    My Ortho, after two surgeries for crushed ankle, suspects CRPS. She has referred me to a pain management physician but I want a second opinion before choosing any additional treatments. I can travel for the best interdisciplinary team if needed. I live in Mississippi. Please help me find best help regionally to Mississippi, North Carolina, or Michigan.

    reply to comment →
  108. Lana Cooper

    Can you provide me with a list of doctors in the Northern KY, Cincinnati, Ohio area please?

    I was recently diagnosed with CRPS but apparently have had it for 4 years after multiple surgeries on my foot. I have had horrendous pain for 4 years now and can not find a doctor who is knowledgeable of CRPS. Any help would be greatly appreciated.

    reply to comment →
  113. Jaclyn Jones

    I cannot find a dr to actually treat me in Kentucky. The 7th dr I’ve seen just said hes passing me on to another dr. I was a pm patient in texas you over 10 years same dr without an issue.. but in ky..they keep passing me around with no treatment at all. Any dr in ky capable of treating CRPS in the back? Thanks

    reply to comment →
  116. Jessie Serrano

    Hi, my Mom has suffered from RSDS since the late 90’s and she recently got into a car accident and her ankle was crushed and her hand and wrist broken. She is having a very difficult time healing, and I believe that we need to get her with an orthopedic surgeon who specializes in CRPS, because the ortho who did her surgery is not understanding what she is going through or how complicated her healing process is due to the CRPS. She is staying with me in the Charlotte NC area. Please help me find a doctor who can help her heal from this terrible accident. Thank you, Jessie.

    reply to comment →
  117. Leslie

    Our daughter is 24 years old, was diagnosed with CRPS 14 years ago. We desperately need a list of doctors in the Denver/Colorado Springs Colorado area that treat full body CRPS. OR does the Mayo Clinic in Arizona treat CRPS in young adults. Thank you for any and all information you can provide

    reply to comment →
  124. Karen

    Hi,
    How can I find an excellent rehabilitation-oriented pain specialist for CRPS in the area I live in? I’m located in the Cupertino/Mountain View/Palo Alto/Los Gatos area. I’m currently seeing a pain management specialist but he’s mainly focused on prescribing meds and wants to to lumbar blocks.

    I’m already subscribed to the mailing list.

    Thank you,

    Karen

    reply to comment →
    1. Gregg Harris

      Hi Karen, Good evening & Grace To You! I have an awful case of Central Pain Syndrome since 2014 and have had to live with level 10+ pain 24/7..mine is a deep burning on the entire left side of my body. Every opiate has failed. I just came across Dr. Feinberg this evening. He’s not to far from where you are. Im east of Sacramento a few miles and i’m going to call his office in the morning. He supposedly has a lot of experience with our condition.

      His address is 825 El Camino Real — Palo Alto, CA 94301
      Ph: 650-223-6400

      Steven Feinberg, MD, Physical Medicine/Rehab, Palo Alto, CA
      StevenDonaldFeinbergMD
      Physical Medicine/Rehab Palo Alto, CA
      Pain Medicine
      Medical Director Feinberg Medical Group

      For 5 years I’ve been looking for anyone who actually has what I have to see how they are dealing with this awful condition. No luck so far. I wish you the best and will be praying that you find the relief so badly needed.
      God’s rich blessings,
      Gregg Harris (817) 500-1333

      reply to comment →
  125. Mark

    Hi, this Mark from Indianpolis, broke ankle 5 weeks ago, just got diagnosis of CPRS , could I have list of best providers in my region. Present Team suggesting increasing opioids, which is not helping much anyway. Looking for the experienced interactive team rather than a single provider recommending lucrative mostly unhelpful procedures,
    Tx

    reply to comment →
  127. Jennifer Scelso

    Hello, I am another Florida resident looking for a good CRPS specialist. I found Dr. Dorsher at the Mayo Clinic in Jacksonville. He was the best doctor I have found in the 4 years since I was diagnosed. Sadly, he just retired and they do not have anyone to replace him. Does anyone have another Doctor they could recommend?
    Thank you!

    reply to comment →
  130. Ellen Brehony

    I am looking for a dr around me that treats RSD Patient in stage 4 and a infusion pump.The dr I have keeps cutting me back on morphine and pain medication.I am so treated like I am a animal that was just picked up and am now being neglected. Please help me find a GREAT Dr who does RSD stage 4.Who will treat me like a human Thank you kindly

    reply to comment →
  132. Laurie

    Hello!

    I was diagnosed with RSD/CRPS in 2014 due to an ankle surgery that went wrong. I use to live in Texas and now I am living in New Mexico. I am on Medicare and need a network of doctors to handle my case. I recently had an emergency surgery on my other ankle due to a horrible accident that almost severed my foot. There are clear signs of CRPS settling in now. I have a stimulator which helps some and I take Lyrica for the nerve pain which also helps some. Can you please send me a list for New Mexico Dr.’s who specialize in CRPS that take Medicare.
    Thank you

    reply to comment →
  133. Pattie Rauch

    I really need a pain specialist. I called and gave my information to 3 pain management specialists and they will not accept my case. I need a pain specialist. I need treatment for this disease and I need it ASAP.
    Please help me out if you can. I will travel to anther state if i have to.
    I am in Lehighton, PA. I am in between the Pocono’s and Lehigh Valley (Allentown). I am about an hour and a half away from Philadelphia.

    reply to comment →
  134. Kristen

    HI I am a care manager for UPMC and I am working with a youth who has been diagnosed with CRPS. They are struggling with finding psychotherapy in Pennsylvania that are familiar with the disease. IS there anything you can suggest to help? Thank you!!

    reply to comment →
  135. Jennifer B

    Hi, I had a Achilles repair (5 weeks post-op) and have symptoms of CRPS. A pain doctor diagnosed me with CRPS but my Ortho (and Ortho 2nd opinion) said it was too soon & they think with therapy & time it will go away but may take months. Can you please provide a list of doctors in the Chicago Suburbs and/or Chicago? I want to give myself the best chance. Thank you!

    reply to comment →
  136. J little

    Central ILLINOIS . Crps upper right quadrant from electrocution accident. Been to 5 different pain clinics, at my sixth now. Almost all of medications have had really bad side effects. I.e. allergic,trouble urinating,serotonin syndrome, you name it. Norco 10/325 takes little bit of edge off, I don’t know why. Hydromorphone er worked well but current treating physician is more worried about addiction than me having some semblance of a life. Any recommendations or ideas? How can I advocate for myself without being labeled a “ drug seeker” or losing my cool? they can’t understand why I don’t want a scs trial. My research and even the top neurosurgeon says it can spread which it already has. Any ideas please?

    reply to comment →
    1. Sean

      Little,

      My wife is in the same boat and has went through every pharm. drug there practically is. There is a name for it but the medication only provides relief for 6-8 months before her system no longer metabolizes it like it should. I know that the feds have cracked down on opiate prescriptions nationwide…and rightfully so for individuals that abuse them or have a history. But those with legit issues are really struggling. Very hard to find a doctor that understands, let alone has experience treating CRPS appropriately in our area. Ketamine has been the only drug that has provided her pronounced and longer lasting pain relief. We are planning travel to a special center in FL and willing to travel anywhere where someone correctly knows how to treat this. Was curious on how your search in IL is going. We live in WI.

      reply to comment →
  138. DONNA M SPAUSE

    My daughter has been battling this terrible disease for over 4 years and is overwhelmed with pain and sorrow. We have had the spinal stimulator, PT, drugs, Marijuana etc.. and now
    she has no hope left. I am searching for a facility that can
    help with this condition. We are in Norristown, PA 19403.
    Thank you for any help you can give.
    Sincerely,
    Donna Spause

    reply to comment →
  139. 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 →
  140. 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 →
  141. 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 →
  142. 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 →
  146. 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 →
  148. 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 →
  150. 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 →
  151. 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 →
  152. 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 →
  154. 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 →
  156. 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 →
  157. 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 →
  159. 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 →
  161. 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 →
  162. 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 →
  163. 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 →
  164. 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 →
  168. 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 →
    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 →
      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 →
  174. 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 →
      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 →
        1. Fran

          My son has suffered from CRPS for almost eight years. He has never had success finding the kind of doctors recommended in this site. What doctors are there in North Carolina? He has had all the other kinds, stimulator, unsuccessful, ketamine infusion, disastrous, pain management, not working. He is bedridden. Any help out there anywhere?

          reply to comment →
    3. Sandy abramowitz

      I saw your post. Have crps or rsd. Live in delray beach. Dr I was using closed his practice. And retired. Saw you were asking for list of Drs. Am desperate to find one. Greatly apprec if you could send me list or how to get one. Is there local group? Thanks for your help in advance. Wishing you less pain. Sandy

      reply to comment →

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