Why You Need to Address Complex Regional Pain Syndrome

Overcoming complex regional pain syndrome

woman holding leg in pain

Complex regional pain syndrome (CRPS) is as bad as it sounds — severe, spreading chronic pain with redness, fluctuating skin temperature, and sometimes changes in body hair and nail growth. These issues make it hard for most patients to use their affected arm or leg, the body parts that are most often impacted.

As if that’s not enough, CRPS is not widely known by many doctors and is not well understood, so it is often misdiagnosed and many patients receive the wrong treatments or no treatment at all.

Most cases of CRPS develop after an injury to a limb. Up to 7 percent of children who suffer a traumatic arm or leg injury may develop CRPS shortly afterward. That rate is even higher in adults: about 8 to 10 percent.

Because CRPS can cause the arm or leg to stiffen over time, the pain usually worsens without treatment and makes movement more and more difficult. For these reasons, early diagnosis and the right treatment are critical.

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Comprehensive treatment needed

Treatment of CRPS requires multiple therapy approaches carefully coordinated by physicians and therapists who are experienced in this complex condition.

The approach to CRPS at Cleveland Clinic has been shaped by Dr. Stanton-Hicks, MD, a consultant in our Department of Pain Management who is one of the world’s leading experts on the condition. He helped establish the Pediatric Pain Rehabilitation Program at Cleveland Clinic’s Shaker Campus, which provides an intensive program for children and adolescents with CRPS. This complements the Chronic Pain Rehabilitation Program, a similar program for adults with CRPS.

It is important to integrate a range of physical, occupational and psychological therapies — such as biofeedback, relaxation techniques and group therapy — on an inpatient and day-care basis over a three-week period. In regards to children, the emphasis is on psychological approaches, for patients and their parents alike, because of the importance of developmental changes in children’s responses to pain.

“Both programs aim to raise patients’ pain threshold and help them manage pain so that it’s not such a big part of their lives,” explains Dr. Stanton-Hicks.

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Learning to manage the pain

The techniques that patients learn in these programs, sometimes together with well-chosen medications, enable some patients with CRPS to successfully manage their pain and lead active, “normal” lives. Other patients require additional interventions, such as nerve blocks or spinal cord stimulators that modulate pain by delivering electricity to the spine.

About 80 to 85 percent of children and adolescents with CRPS who complete this intensive array of therapies eventually get “almost completely better,” says Dr. Stanton-Hicks. That degree of recovery is unusual in adults, where the aim is more about maintaining function and reducing pain to a level that lets patients keep working and lead a relatively normal life, he explains.

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  • T. Hopper

    My son has CRPS and completed the pediatric pain rehab program in April of last year. It was life-changing for him and restored the function to his leg. Amazing program run by amazing people!

  • ornurse32

    My son is 11 years old and is suffering terribly from a leg injury that caused CRPS. We are being treated by local physicians but NOTHING has helped. It has only been 7 weeks today but he is in CONSTANT intractable pain 24/7. Our insurance says they will not cover the Cleveland Clinic until all treatments have failed here in Michigan. Any advice? Two failed nerve blocks and max meds haven’t touched it.

    • Patient

      You should call Cleveland clinic and ask to speak with their financial department. You may find a loophole in your insurance or you may find you can cover the cost without your insurance (letting the doctors and staff know your situation, who your insurance provider is and what they told you may result in them lowering the treatment costs in your specific case) I am in no way affiliated with Cleveland clinic and am not saying they will do this but it is worth a shot! I am a patient there and can tell you they are amazing and I am no doubt alive today because of them. I hope your son is able to get the treatment he needs and can be rehabilitated and enjoy hos life. Pain is a horrible and debilitating issue and when the patient is a child its even worse. Good luck!

    • Sheila Atkinson

      Have you tried mirror therapy. The same kind they do for phantom limb pain. There are videos on YouTube showing how to make a simple one. It’s non invasive and with no side effects. You could also consider Bowen therapy as it is good for children. I also take anti epileptic medication which helps to dampen down the burning nerve pain. Hope things calm down for him. It’s hard enough trying to deal with it as an adult x

      • Kim Hughes

        Though I was skeptical at first, I had beneficial results from mirror box therapy.

    • Misha

      May I suggest, if you have not already heard about it, Calmare Therapy. Dr Cooney in NJ is fantastic, caring and very thorough. Calmare is a non pharmaceutical, non surgical procedure.
      My heart goes out to you and your son x

  • Elisha Wooden

    My husband has been dealing with this for 4 yrs. We drive 5 hrs to see a specialist in San Francisco who experiment on him with different meds..spinal blocks and therapy. With not much success. He cant walk far and requires a cane for assistants as his knee will just let out from under him. The meds are mostly neurologic so hes not always himself. I wish we had someone who could help him function better and be apart of our family activitys again, we have 5 kids still at home and he just cant function.

    • Sheila Atkinson

      Physical therapy and exercises in water help me. I go to a special swimming pool made for handicapped people. It has ramp access and is as warm as a bath. Walk in showers and wet rooms help with bathing. You can get inflatable bath chairs to get in and out of the bath. I have one. It’s called a Mangar. I have to use a stick now as my CRPS has spread from an arm injury 5 years ago. The first year was all about what I couldn’t do any more. The second was about what I can still do. Now I try new things and if I can’t do them at least I know I gave it a go. I don’t lose anything by trying as I know what I can still do. It’s more a case of mentally accepting that your old life has gone and saying RIP to it. I found I had to reinvent myself. It stopped me in my tracks from being who I thought I was. Dealing with the pain and physical limitations is only one part of the condition. Getting family and friends to understand that one day you may be fine to do something and the next you can’t get out of bed is difficult. Even over the day things can change. My example is when I was invited to the cinema. It was cold outside and I was travelling in a car. Even before I got in the car I had to think about whether my pain meds would last through the film, what coat to wear as I may be too hot in the car and cinema. Would I be able to take my coat off in the restricted space because of my arm restrictions. Would I get knocked by people increasing my pain. Would I be able to sit in the seat for that length of time. How would I cope with the vibrations of the car and cinema sound track. All these things are the kind of issues that go through the head of a CRPS sufferer. It makes life difficult for the person with the condition feel part of things. Whether that is family outings, social gatherings or work events. That is if you have managed to keep your job. I lost mine after collapsing at work a year after diagnosis. A positive attitude and keeping mobile is the best treatment. Break tasks down into smaller parts and rest in between. Don’t overdo things when you feel well as you will pay for it in pain later. Set realistic goals. Don’t set a deadline for things. If you have things to do don’t assign a day. Plan a list of things to do over the week. That way you don’t build in failure if you have bad days. I hope you find this useful. Many blessings for less pain in your lives, both physical and emotional x

      • Ed

        I know that you wrote this sometime ago but it explains EXACTLY what I am going through. I don’t go out to movies etc anymore because of the very reasons you describe. I am at home most of the time and I keep myself busy with artistic and gardening activities since I can’t golf or go to the gym anymore. I hope that you are dealing with it a lot better than when first diagnosed. As you pointed out, I am now at the stage where I am over the mourning for the loss of my past life. Now I try to get by with what I can do. Best wishes.

  • https://twitter.com/TheRiddleClass TheRiddleClass

    Can this be from an injury from years ago?

    • Sheila Atkinson

      There could be more incidents where there is already a weakness but the weakness or historical injury itself is not likely to be the cause alone. A simple sprain can cause it. I had a dislocation of my shoulder when I was 17. At 44 my shoulder was dislocated again and it set off crps. I had no symptoms of crps previously. High doses of vitamin c prior to surgery have shown to reduce risk of developing crps.

      • Kim Hughes

        Exactly why I find it so amazing that they don’t simply require or at LEAST suggest that all patients take high doses of vitamin c prior to any surgery. I now tell anyone I know to do this!

  • Lindsey

    This article is horrible. Fear-mongering shows its ugly head when you state that this could develop in 8-10% of limb injuries in adults. The truth is this condition is classified as “extremely rare.” Fewer than 2% of peripheral nerve damage injuries could result in this extremely painful condition – and only a small fraction of limb injuries could even cause this type of nerve damage. Secondly, this article grossly understates the effects of CRPS. This central nervous disorder not only causes the worst pain ever described, it also causes severe systemic complications, including the potential for osteoporosis, severe anxiety, multiple organ failure, etc. And last, but most important, this article fails to note that NONE of the currently available treatment options have shown consistent results for this disease. The FDA currently recognizes no medications or procedures as potential treatments for CRPS. Luckily, two drugs are in the clinical trial phase this year. Other than that, the majority of us suffer this disease in lonely silence, praying desperately for the energy to get out of bed each day. We are looking for help with activities of daily living, not “aggressive treatment” methods that often can lead to worsened symptoms.

    • James

      Like your style nicely done.

    • Ed

      Well done. However, Cleveland Clinic seems to emphasize pediatric treatment more so than adults. Like you and many others, I am 69 years old and luckily retired, never mind that I have not enjoyed even one day of retirement due to CRPS following extensive surgeries for a knee replacement which went horribly wrong. But you are correct, we are looking for help with daily living and not aggressive treatment. My doctor did try 4 different attempts at nerve blocks, both spinal sympathetic and genicular. None worked and just made things worse, at my insistence, we now treat the symptoms with opiods and hope for the best.

    • Catherine Griffard

      I totally agree 100% with you. This article seems to minimize the actual pain, both physically and emotionally. It mentions nothing about how we as patience and sufferers end up educating Doctors, especially ER doctors more than they educate us!! I’m very fortunate to have the amazing medical staff who actually specialize in crps/rsd, and they work with me not against me. They treat me as a person who suffers daily.
      This article seems to leave out many facts, the way most people suffer alone due to the uneducated people who are to arrogant to even research this life changing horrible most painful debilitating thing I’ve ever been thru, that my family has been thru. They say we need to educate, but offer no advice in the aspects of this. Gentle hugs to you