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Joe Tatta, PT, DPT

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How to treat complex regional pain syndrome

Complex Regional Pain Syndrome (CRPS) is ranked as the most painful form of chronic pain that exists today.

Complex Regional Pain Syndrome (CRPS) is a chronic pain condition that can affect a limb of an individual and typically occurs after an injury or trauma in over ninety percent of the cases. CRPS will present with prolonged, chronic (> 6 months in duration) pain in the injured limb long after the initial injury (phases of healing) has occurred. The pain is often described as a burning, or “pins and needles sensation”. Other common features of CRPS include:

  • changes in skin texture on the affected area; it may appear shiny and thin
  • abnormal sweating pattern in the affected area or surrounding areas
  • changes in nail and hair growth patterns
  • stiffness in affected joints
  • problems coordinating muscle movement, with decreased ability to move the affected body part
  • abnormal movement in the affected limb, most often fixed abnormal posture (called dystonia) but also tremors in or jerking of the limb.

CRPS usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas. [1].

CRPS is divided into two different types: Type-I and Type-II. Type-I involves CRPS when there is no known nerve injury that has occurred. Type-II is used to describe CRPS when there is a known nerve injury. CRPS is sometimes referred to as Reflex Sympathetic Dystrophy Syndrome or RSD. However, this is an older term that now is referred to as CRPS Type-I [2].

What Causes CRPS? (Complex Regional Pain Syndrome)

Peripheral nerve abnormalities are found in individuals with CRPS and usually involve the small unmyelinated and thinly myelinated sensory nerve fibers (axons) that carry messages and signals to blood vessels. (Myelin is a mixture of protein and fat that surround and insulate nerves.) Because nerves communicate with blood vessels, injuries to the fibers may trigger the many different symptoms of CRPS. Chemicals secreted from the ends of hyperactive nerve fibers contribute to inflammation. These peripheral nerve abnormalities in turn trigger changes in the spinal cord and brain.

Blood vessels in the affected limb may dilate (open) or leak fluid into the surrounding tissue, causing redness and swelling. The dilation and constriction of small blood vessels are controlled by small nerve fiber axons as well as chemical messengers in the blood.  The underlying muscles and deeper tissues become starved of oxygen and nutrients, which causes muscle and joint pain as well as damage.  The blood vessels may over-constrict (clamp down), causing old, white, or bluish skin.

CRPS also affects the immune system. High levels of inflammatory chemicals (cytokines) have been found in the tissues of people with CRPS.  These contribute to the redness, swelling, and warmth reported by many patients. CRPS is more common in individuals with other inflammatory and autoimmune conditions.

There is very limited data supporting genetic differences in those with CRPS (Complex Regional Pain Syndrome)

Diet and nutrition are important for those recovering from CRPS Click To Tweet

It’s Not “all in your head”

CRPS

CRPS involves changes in the nervous system.

Individuals who suffer from chronic pain conditions can often hear that the pain “is in their head” because it is frequently difficult to pinpoint a reason for the pain. Such is not the case with a diagnosis of CRPS. CRPS is diagnosed, in part, because there are physiologic changes that take place within the body.

These physical changes occur due to hyperactivity of the peripheral and central nervous system in the involved limb. The hyperactivity has been compared to a food allergy to help better understand and explain the pain. With food allergies, an individual has an intense, adverse reaction to a food that is innocuous to the majority of the population. Similarly, an adverse reaction occurs to individuals diagnosed with CRPS after the injury to the involved limb. The injury can be severe or very minor, ranging from a surgical procedure or a fracture to something as small as an ankle sprain or prolonged immobilization. This injury than is reacted to by the body by an intense hyperactive response, much like a food allergy. [3]

Since CRPS is multifactorial in its causes and presentation, there is no singular treatment that works best. Preferred treatment often depends on each individual patient. A point of emphasis found in the literature is that immobilization is detrimental to individuals with CRPS, movement is key. It has also been shown that early intervention often leads to better outcomes. This is usually problematic due to the difficulty and time needed to make a proper diagnosis of CRPS, however, the quicker one can receive treatment, the better [4].

CRPS

Foods to avoid as much as possible include:

  • Processed meats, such as cold cuts.
  • Enriched, or bleached flour products, such as white breads and pastas
  • Margarine, Crisco, and other shortenings – olive oil should be used instead
  • Sweetened beverages such as soft drinks
  • Cookies, cakes, pies, donuts, and ice cream
  • Alcohol, such as beer, liquor, and wine

Three Action Steps for Those with CRPS (Complex Regional Pain Syndrome)

Here are a few actionable steps to support and prepare you for a full recovery and return to a pain-free life.

1. Find a Physical Therapist with advanced knowledge, experience, and skills that may apply to your condition and physical therapist who is well-versed in the treatment of CRPS or other complex, painful conditions. Exercise, Graded Motor Imagery, Pain Exposure Therapy, Aquatic Therapy and relaxation exercises are primary treatment modalities physical therapist use and often the most beneficial for those with CRPS. These are crucial to start the journey back to life with less pain.

General tips when you’re looking for a physical therapist (or any other health care provider):

  • Get recommendations from family and friends or from other healthcare providers. Be cautious, many physicians have a poor understanding of physical therapy treatment for those with pain, or how it supports both the brain and body. You may have to do some research on your own for a qualified physical therapist. You may have to ask for a referral is it is not freely provided. The longer you wait to initiate movement, the longer the CRPS and pain will persist.
  • When you contact a physical therapy clinic for an appointment, ask about the physical therapists’ experience in helping people with painful conditions.
  • During your first visit with the physical therapist, be prepared to describe your symptoms in as much detail as possible; keeping a journal highlighting when you experience pain will help the physical therapist identify the best approach to your individual treatment.

2. Secure Psychological Support. Understand that your pain is not in your head. It is very real, trust your instinct that you need help to heal. Psychological factors such as overcoming fear and acceptance are needed to move forward. A psychologist can provide much-needed support as well as stress management, coping strategies and general counseling to talk through your worries, anxiety, and concerns. Depression may accompany CRPS and require treatment. Support from friends and family are crucial and may require you to ask for more help when needed. There will be those who rally around you. Others may barely understand what it is like to live a life with pain.

3. Speak with your insurance company, health care providers and employer. CRPS can take weeks to months to heal. You may have to prepare yourself and your family for financial changes as pain care is poorly covered by major medical insurance. Discuss your benefits with your insurance carrier regarding physical therapy, occupational therapy, nutrition, and psychotherapy. All may be needed to fully recover. Discuss lost time and wages with your human resource department or employer. You may need to discuss out of pocket payments with your provider should insurance not cover the required treatment.

It’s Not “all in your head” Click To Tweet

CRPS Care Begins with Compassion

Living with CRPS or any chronic pain condition is not easy. Chronic pain imparts significant psychosocial burden to the individuals and their loved ones. Pain is both a sensory and emotional experience and nowhere is this more apparent than in those who suffer from CRPS. Along with the obvious physical changes come the emotions of frustration, anger, resentment, sadness, grief, and fear. Caring and compassion are needed for those who struggle with CRPS.

Anger is an important emotional link in chronic pain and is likely to occur as those with CRPS negotiate the medical system and try to solve their pain puzzle. Anger and animosity towards others as well as towards oneself, including disappointment and frustration with pain care, self-blame, self-criticism, and poor acceptance of one’s physical limitations are common and understandable. Anger has also been associated with reduced pain treatment response and impaired relationships with friends and family. Eastern traditions prescribe compassion cultivation to treat persistent anger. Compassion cultivation has been shown to influence emotional processing and reduce negativity. The cultivation of an 8-week compassion meditation practice can help those with chronic pain decrease pain severity, anger and work toward acceptance of their condition. Meditation can help individuals cope with CRPS by using the non-physical mechanisms of our nervous systems to decrease the perception of pain and promote well-being. [8] Developing compassion toward oneself and others can be developed through a loving-kindness meditation practice with a psychotherapist or meditation teacher.[9]

 

Dr. Joe TattaHow to treat complex regional pain syndrome
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  • Dee - May 11, 2017 reply

    Thank you so much for addressing this! CRPS/RSD is so difficult to deal with and people really need to know what can help. Mine is under much better control than when it first developed, but it does still affect everything I do and has to be planned for and worked around. I have a pinched nerve in the foot on the affected side, and since circulation never went quite back to normal there, if I overdo anything, like walking (even while wearing special shoes with my custom orthotics in them), sitting or standing in one position too long (and I need to keep the foot and leg elevated and/or moving a bit), or driving (even being a passenger on long trips) the fluid build up affects the pinched nerve, and then the pinched nerve triggers the CRPS burning pain. Thankfully the pain is no longer on the absolutely overwhelming level that it once was. I only found out about the inflammatory, possibly autoimmune, component a couple of years ago, I wish I had known when I was first diagnosed. I would be interested to know if you have had any patients use low-dose naltrexone as part of their treatment?

    For anybody who might be newly diagnosed and hasn’t been told, one of the most important things that helped me at the beginning was to stop using ice! I was misdiagnosed after my injury and using ice as directed by the doctor made the CRPS much worse.

    Dr. Joe Tatta - May 12, 2017 reply

    Hi Dee! Thank you for your kind words about the CRPS blog post. Since so many struggle with CRPS and rarely find the right treatment I thought it was important to share information that would be helpful and supportive. I have had patients on LDN most with limited success. Thank you for sharing what worked for you. Sharing of information is very important. Let me know how else I can help you Dee! I’m here is you need anything! Dr. Joe

  • Annie - May 12, 2017 reply

    Hi Joe, I also have CRPS diagnosed after 2 years. Its very important to get diagnosed early. I have little income so I pursued LDN and it has helped me to manage much of the pain. I recently found out about PEA or Palmitoylethanolamide and it works really well to help with the inflammation, Vitalitus makes a cream that is only $35 a month compared to ketamine cream with lidiocane etc . I paid $180 for that prescripiton. Soothamide has helped me with the redness and pain. It lasts a good 4-8 hrs.
    I am almost looking at normal skin tone on my feet and knees which are usually blue, red, white and all the different possible colors you can imagine. This is after not quite 2 months of use. I now am taking 2 capsules 2-3 times a day with meals.
    I try my best to follow the autoimmune protocol diet but due to being thin with stress weight loss I am improvising. I had interferon years ago which caused Adrenal fatigue. if stressed i lose weight over night. I am trying to balance a diet that is good for my bones, the pain, and thyroid. Thank you for being there for all of is with issues that you address. Pain in the brain is a hard one to grasp at times. I too used ice. I had no idea its not good till I read the above comment Thank you Dee.

    Dr. Joe Tatta - May 14, 2017 reply

    Thank you for sharing your story with us Annie. We appreciate the tips and strategies you listed above. Have you been able to receive any physical therapy and has it helped you? Sounds like you are doing a wonderful job with the diet and grasping some of the more difficult concepts about pain. Please keep us up to date on your progress and let me know if you need any help.

  • Jerry - July 23, 2017 reply

    I have been fighting CRPS for 4 years. Had to drive 90 miles to Houston to get help and it still didn’t happen immediately. Took 3 doctors over there before I found one that knew and treated CRPS. I also used ice! No creams have ever helped as well as pain mess. Some of the opioids will dull it enough so I can sleep. I do suffer from depression but have a wonderful husband that is there with love for me and 3 doctors doing their best. I happen to be their only failure. Gee me. We are going for a spinal stimulator implant. We are praying it will work. The doctor says he has 86% relief rate for CRPS using it

  • Mary Homar - February 19, 2018 reply

    Hi after 12 weeks of breaking my wrist I’ve been diagnosed with CRPS. The PA at the pain clinic prescribed a series of Stellate Ganglion Blocks. But I have concerns about it because of the risks of nerve damage collapsed lung and seizures since I am very sensitive to a lot even herbs. Is this a common treatment for CRPS? Are there other options? I’m trying to find alternative ways to calm the symphatic nervous system but my time is running out since my pain is increasing. I’m on 800mg ibuprofen 2-3 x day and 10-325 Norco
    which is affecting my stomach. I’m on a anti inflammatory diet.

    Thank you for your time.

    Dr. Joe Tatta - March 22, 2018 reply

    Here is a resource for you Mary: http://www.drjoetatta.com/crps-complex-regional-pain-syndrome/

  • Todd Ferrell - April 3, 2018 reply

    My wife was diagnosed with CRPS after getting a knee scope. She has had MANY knee surgeries without any problems at all, but a day after this particular surgery we noticed swelling in her foot. It has been horrible for her. Her foot is so swollen she has not been able to wear a shoe for a year. She has been told it is the worse case they have ever seen. She recently had the test spinal implant for a week and it didnt help her at all. She is at the end of her rope. We dont know what to do. Its not just the pain, but the swelling. If she could just wear a shoe it would help her feel normal.

    Dr. Joe Tatta - April 4, 2018 reply

    Hi Todd, sorry your wife is struggling with CRPS. Have you tried physical therapy?

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