Category: Guest Blogger for RSDSA

Written by Rachel Ehrenberg for the RSDSA blog.

Often times, we discuss what we want to hear from our loved ones about chronic pain. It is not often we get to tell them the things we need them to know and to hear. Rachel took the big step to make this list happen.

There are so many misconceptions about people with chronic pain. Unless you are living with it, nobody can actually truly understand what living in with it feels like. It becomes extremely draining emotionally and physically for us struggling with chronic pain. And for me, whenever I am having a rough time, there are a few things that I wished people knew about.

I suffer from Reflex Sympathetic Dystrophy (RSD)/Chronic Regional Pain Syndrome (CRPS). The majority of these points are directly related to my chronic illness and my own experiences.

1. We need your help!

We don’t like asking for help and we certainly don’t like needing it. However, it is so important for us to know that someone will be there to help us through the tough days. With that being said, don’t always expect us to ask for the help. Because we try so hard to hide our pain, we don’t want to let others know when we need help. So sometimes its better for you to just come up to us.

2. Just because we look “fine” doesn’t mean we feel fine.

It is so easy for people to forget that there is something wrong when we can easily put a smile on our face and walk around like everything is normal. We can laugh, hang out with friends, and carry a conversation all while the pain is getting more and more intense. We may need to take a step back sometimes and leave. This in no way means that we are always like this or that we are faking our happiness everyday. There are plenty of times that I am genuinely happy and don’t need to pretend. The challenge comes when the pain is exceedingly overwhelming and all we want to do is lay down.

3. A simple text can mean the world to us.

Living with chronic pain sometimes puts us in a bubble of our own. We feel alone and isolated. Nobody around us can understand what we are going through and how we feel on a daily basis. The more these thoughts happen, the more we want to pull back from friends and loved ones. TEXT US. You never know when someone needs a little extra encouragement to get them through the day. Even a simple “you got this” or “thinking about you” will remind us that we aren’t alone.

4. Stop trying to compare us to yourself or other people

Yes, there are people who have it “worse”. But if you tell this to a person with chronic pain, it makes us feel inadequate. Along with that, please don’t compare me to you. If you have an injury or something that causes you pain, I’m sorry, I know its awful, but do not try to tell me that your pain is anywhere near the same level as mine. RSD/CRPS is rated a 42 out of 50 on the McGill Pain Scale. This is higher than both childbirth and amputation. There is nothing we can do to make our pain go away. If you have the option to rest and the result will be beneficial, do it. Don’t complain to me that you have just been too busy to rest or that you just don’t want to take a break and now your pain has worsened. If I had that option, I would take it. And If I am trying to confide in you how I truly feel about my pain, just let me talk. Don’t say, “I completely get it” or anything along those lines. Because I assure you, you don’t get it. However, I do know that if you are injured or experience pain, your pain is very real. It is okay to complain about it to me, just don’t compare.

5. Sometimes we just need you to listen

More often than not, people with chronic pain tend to bottle up their feelings in fear of loosing friendships or irritating others. When we finally find someone who we can trust to talk to, the new fear is, “are they going to try to fix me” or “are they still going to want to be my friend”? A large majority of people with chronic pain talk to doctors and psychologists all the time and the only thing they do is try to figure out how to lessen the pain or manage with it. There isn’t much support. If I trust you enough to put myself in a vulnerable position, please just listen and be there for me. But know that we aren’t trying to make you responsible for us. That is the last thing we want. For me, I can only share how I am feeling with people who I don’t think will judge me. If a person with chronic pain decides to talk to you, don’t rush them. We can talk to doctors all we want, but sometimes it’s just better and easier to talk to a friend. When we do talk to you, try to stay away from responses such as, “just deal with it”. Comments like this can be hurtful even if that wasn’t your intended purpose.

There are many do’s and don’ts when it comes to chronic pain. If you are ever unsure on what to say or how to say it, the best thing you can do is ask. We would rather have a conversation about our disease to answer your questions, then having you assume something. Please be patient with us. Although it may seem like we want to give up at times, we are trying our best to get through each day.

By Guest Blogger Gabe King

“You come out of suffering sometimes scarred. But you come out, anyway, a stronger person…you become, yourself, a wounded healer.” -Bobby Schuller

As a chronic pain warrior, have you ever thought of yourself as a healer? Not a physical healer, by no means! If that were the case, we would not be in the state we are in currently. No, I speak of being what Bobby Schuller termed a ‘wounded healer’.

What does that mean? A wounded healer is one who is or has gone through a time of suffering. Instead of being broken by it all, they come out stronger and are able to aid those on a similar path. Though unable to heal their fellow travelers physically, they can come alongside, empathetically encouraging them on their journey.

Two examples come to mind.

The first, The Good Samaritan (Luke 10: 25-37), a parable that Jesus told to his disciples. The story goes that a Jewish man was traveling from Jerusalem to Jericho when he was attacked by bandits who stripped him of his clothes, beat him, and left him die on the side of the road. By chance, a priest came by, saw the man lying there, crossed to the other side of the road, and continued on his merry way. Next, came a Levite, who also saw the man and, likewise, crossed to the other side of the road, going on about his busy day. Both too busy and unconcerned to help the dying man. Finally, a Samaritan came, saw the man, and took pity upon him. He dressed the man’s wounds and took him to the nearest inn, where he continued to care for the man. The next day, he gave the innkeeper two silver coins, telling him, “Take care of this man. If the bill runs higher than this, I’ll pay you the next time I’m here.”

What is the significance of this parable? 

In ancient Israel, Samaritans were despised by the Jews because they were pagan, but more specifically because they were half-breeds, half-Jewish; half-Gentile. They were hated so much that the Jews would go out of their way not to step foot inside Samaria. This was the very reason Jesus used a Samaritan in this parable, because he would be the least likely to aid a Jew. But because the Samaritan knew what it was like to be tossed to the side and treated like dirt, he took pity on the beaten man and helped him.

The second example comes from one of my favorite movie trilogies of all time, The Lord Of Rings. In The Return of The King, as Frodo and Sam climb up the steep slopes of Mount Doom to destroy the One Ring wrapped around Frodo’s neck, Frodo finds himself too weak to carry on and loses hope. In typical Sam fashion, he rushes to Frodo’s side, and states, “Come on, Mr. Frodo! I can’t carry it for you…but I can carry you!” And so, Sam, with what strength he has left, lifts Frodo onto his back and slowly climbs up the mountain.

Sam may not have been able to bear the burden of the One Ring, but he could help get Frodo to his destination and destroy it. In this war, we need more wounded healers, those who have gone through the fire and can encourage those who come after.

Will you be one?

By Guest Blogger Terri Arnett

Suddenly living life with chronic pain syndromes, such as CRPS/RSD, can be a shock to the system. There are a number of trials and tribulations that people living with CRPS/RSD go through. Terri Arnett writes about her experience and how she now feels hopeful and encouraged.

I know why people take their lives due to mind-altering pain. The type of pain that shrouds your every move, your every thought, your very existence. A pain no narcotic can relieve. A level of pain that makes you think you will lose your mind. I know because this was me. This is my story.

For 10 years I wandered the land of Ooos and Aghs. It started innocently: my right hand and fingers gradually became so cold I required a space heater year-round by my office chair to warm my hand. Typing on the computer made them even colder. When I told my assistant my hand was cold in July, she grabbed it and joked, “It’s because you’re a weirdo.” I shrugged. I’d worked hard to become so.

As the months turned into years I grew steadily worse. Now the top of my right hand, my fingertips, the palm of my hand, and my wrist burned like they were on fire. This became my way of life. I consulted MDs, PhDs, and neurologists who ran a plethora of tests, all of which were negative. They prescribed Gabapentin, which did nothing. I had carpel tunnel surgery after a doctor said that was my problem. When I went back for my check up I told him I still had numbness, tingling, and burning. He responded, “I have no idea what that is.”

By 2013 I was much worse. Now my arm shook so bad it appeared as though I had Parkinson’s. I could not cut my food, my fingertips registered 65° and eating utensils were excruciating. My right hand was stark white when compared to the healthy pink of my left. Most days my pain level rocketed to a nine. At the end of a working day my arm/hand was so weak I could barely lift them off my lap, and I slumped over to the right. I had little strength or ability to lift my arm or to straighten up.

Left on my own I scoured the Internet, pouring through medical sites as though I were going to take the MCATS. Some symptoms were found individually but all symptoms were not found collectively. Desperation set in. I scheduled a consultation with a sports rehab doctor I had seen years before for my lower back.

After describing my symptoms, he asked me to hold my arms up in the “stick ’em up position.” Within seconds my right arm started to shake violently. He was matter of fact; “You have thoracic outlet syndrome.” I thought he was speaking in tongues. He explained this is a vascular issue – not a neurological one – thus it’s very difficult to diagnose. To correct the problem a vascular surgeon must remove the first rib located between your neck and collarbone. This is an area that looks like a “V” with the first rib on top and the collarbone underneath. In the middle are blood vessels. Somehow these become restricted and removing the first rib will allow the proper blood-flow. Because this is a big surgery there was only one doctor that he would trust to perform it: Dr. Gregory Pearl.

Two weeks later I was in Dr. Pearl’s office and within 30 seconds he confirmed the diagnosis. A month later I was in surgery not only to remove my first rib but also to release the right front pectoral muscle to stop the shaking.

I recovered well until October 2015, when some of the TOS symptoms returned. By April 2016 all symptoms had resurfaced. I consulted with Dr. Pearl who believed this was scar tissue, which an EMG confirmed.

On June 28, 2016, surgery was performed to remove the scar tissue from the first rib and pectoral area, and the nerves were wrapped. It was the worst he had seen. Back in my hospital room it was as though joyful emoji’s danced around me: I feel great! This surgery worked! I feel nothing! Brand new woman here! But as the anesthesia wore off these thoughts were replaced by the news that I had received injections to numb me from the collarbone to my chest, down my arm to the tip of my fingers. I felt like the Pillsbury Dough Boy.

Dr. Pearl’s reputation is known world-wide. Yet no one could have predicted that after this surgery, I’d be pushed over the precipice into a year of hell.

July 4 I woke up to a drooped left eye and my right pupil completely dilated. This began my downward spiral into a 24-hour, pain level 10. My condition was far worse than before the surgery. I am right-hand dominant making things worse. New sensations assaulted my body.

• It felt as though someone constantly scrubbed my hand/palm/arm with heavy sandpaper while they relentlessly hammered my funny bone. My fingertips registered 65° but it felt as though a blowtorch was held again them. The bones of my hand felt they were being crushed in a vice grip.
• The slightest touch of my inside elbow, forearm, hand, fingers, against my body was excruciating. As a result, I constantly twisted and turned them in an attempt to find rest and relief, but no position worked. It was simply cruel. I was exhausted and rest was a thing of the past.
• I could not grasp a pen well and thus wrote like a kindergartner. I could no longer work and spending time with family and friends screeched to a halt.
• Personal hygiene was a huge challenge. I could not wash my face because water hurt, a toothbrush became a medieval device, and taking a shower was an out-of-body experience. My husband helped me wash my hair, while hairstyles were a thing of the past.
• Eating utensils felt like the edges were branding my hand/fingers. My husband cut all of my food, even eggs. I could only use my left hand. Preparing meals was no longer possible.
• My hand and fingers would involuntarily cramp closed, forcing me to stretch them open. A diary documented this 82 times a day. Soon my left hand started mirroring the right.
• In summer, the air conditioner made the burning and numbness worse. I’d cringe and withdraw in pain. In winter, the slightest breeze and cold weather escorted me to a new level of crazy.
• At bedtime, tears were a constant companion. Any type of material that innocently grazed my arm escalated the burning this into a bonfire. Sleeping was impossible without heavy drugs.
• My arm could not hang by my side because it made the burning/tingling sky rocket. When I walked I held my right arm in the crook of my left elbow and my right hand/fingers twisted in pain and looked deformed.

September began four weeks of physical therapy. To get my range of motion back, I was to face the corner of two walls and flatten my hands lightly on them. I was not able to flatten my hands and my fingertips could not tolerate the slightest touch. My hand and thumb strength were zero. At the end of four weeks, my range of motion was good but the burning, numbness, funny bone sensations did not improve. When my right arm was extended out to my side, it shook once again like I had Parkinson’s.

October. I felt trapped in my body. How do you get away from yourself? How do you escape unrelenting pain? At the end of five months I took a sharp descent into agony. I would tell my husband don’t touch me, don’t talk to me—I can’t stand it. There were times the pain was so severe I would have panic attacks and stutter uncontrollably, thus I was prescribed Valium. I was short with people and felt I was a mere shadow of the person I used to be. My pain medication was escalated to the strongest narcotics available, but it had the effect of a placebo. When I took Morphine, it slurred my speech and I stumbled around like a modern-day Otis of Mayberry, and I stopped it. I could not see me living the rest of my life at this level of pain and in this debilitating condition.

In November, Dr. Pearl referred me to a pain management doctor, requesting he perform stellate ganglion blocks. These are injections done under anesthesia in the front of the throat to interrupt the pain signal. I would have rather strut like Mick Jagger down Main Street in my birthday suit. Over five months I had six injections with no improvement. In March, this doctor was no longer on my insurance plan.

In prayer I searched the Internet and found raving reviews for Dr. Kelly Will. He was fully aware of my condition, and it finally had a name: Reflex Sympathetic Dystrophy Syndrome. Because the injections had not worked, he suggested a seven-day trial of a spinal cord stimulator from Saint Jude’s Medical. This device short signals the sympathetic nervous system to the brain so it does not perceive the pain signals as pain. The goal is to achieve a 50% reduction in pain and if it has these results, I would make the decision to have a permanent implant. One June 29, 2017, I had the trial implant and the effect was immediate! I went from a pain level of ten to a two. My symptoms had diminished drastically. This was the miracle I had prayed and believed for. Two weeks later I had the permanent implant because as I told him, “I always said I was wired for sound.”

At two months from my implant date, my life is once again filled with laughter and smiles. The year I endured taught me many things. I had to will myself every day to get up and act as if it was a normal day. To put on my make up and get dressed even though it was excruciating to do so. I would make myself go on walks even though I had to hold my arm and somehow protect it from the slightest breeze and agonizing cold. Thru my earbuds I listened to encouraging messages and flooded my soul with gospel music. Yet the vast majority of those walks were spent in tears: some giving thanks that everything would be okay and others due to the unrelenting pain that ravaged my body. And the things I once felt were so important – vacuuming the house, dusting, keeping my home spotless – I found they didn’t matter as much as what I thought they did. I learned to let many things go and not to worry. And I never stopped praying.

I willed myself to keep going, sometimes minute by minute. There were times I would sink into such a deep depression I thought I would never climb out of it. Yet in that deep valley I was forced to look up and continued to believe God would bring a miracle. Occasionally, I reminded Him where I lived.

My miracle came in the form of a spinal cord stimulator through the skillful hands of Dr. Kelly Will and my St. Jude’s rep, Cher. My parents were astounded at my transformation. The pain lines that had once etched my face were now gone – something Dr. Pearl confirmed.

A spinal cord stimulator is life-changing technology, designed for people with forms of chronic pain. Go to St. Jude’s Medical at www.PowerOverYourPain.com for more information. Is it a “cure”? No. That’s like complaining a cow moos. But as for me, to live a life at a pain level two, it sure feels like one.

Be encouraged. You’ll get through this. It’s not easy and chances are, you haven’t shed your last tear. But you’ll get through this. I know because I did.

By Guest Blogger Gabe King

This blog was originally titled “Seeing Is Not Always Believing: How Chronic Pain Warriors Allow Others’ Perception To Shape Them.” As a chronic pain warrior, Gabe knows first hand how other people’s views of us can impact how we think about ourselves. What advice does he have to help us through?

“What you see and hear depends a good deal on where you are standing.” C.S. Lewis

Your hanging out with some friends and they decide to do something that you cannot physically do. You have told them over and over again about your condition and how you are not able to do certain activities that you could do in the past, like the one they are wanting to do now. Despite this, they insist on doing it and, not wanting to be the downer of the group, you relent and join them, spending the next few weeks paying for it.

Sound familiar?

I think I can safely say that we as chronic pain warriors have found ourselves in these circumstances way too many times to count. On the outside, we may seem normal to everyone around us, but the war wages within us, fighting for control of our very lives.

Robertson Davies put it best, “The eye sees only what the mind is prepared to comprehend.” The pain we experience on a daily basis is most times beyond normal human comprehension.

As a chronic pain warrior myself, I have learned, through trial and error, many difficult lessons. Let me share with you three pieces of advice, though difficult to hear, are actually simple things to do when around others.

1. Say No. If you are like me, “no” has become like a four-letter word. But, believe me when I say that it can literally save you from a world of hurt. Discerning what your body can handle at any given juncture is key to fighting your pain.
2. Educate them. Tell them everything about your illness and what you can and cannot do. You may have to constantly remind them, but that is okay. If they truly care about you, they will listen.
3. Be Consistent. If you have already educated them, do not participate in things just to please them or fit in. You will just play into what so many think about our invisible fight, that what they do not see does not exist, that it is all in our head.

Do not let the perceptions of those around you make you hide behind a mask of “normalcy”.  Your pain does not define you, nor is it a crutch, but fueling it by doing stupid things just to please your friends is foolish. I hope that you find this advice helpful as you continue your everyday battles with chronic pain.

Stay the course.

By Anonymous

Being diagnosed with CRPS at a young age comes with its own complications. There are so many things to try, so many people with different opinions, and so many different emotions that can be felt. This author wrote about their experience with CRPS, grief, and learning to live with pain.

When I was twenty-four years old, I was working 40 hours a week on my feet as a restaurant manager.  Working this way for three years straight never really bothered me.  It wasn’t until one Friday afternoon when I began feeling an excruciating pain in my lower left leg.  Despite it getting worse as I tried to walk on it, I really didn’t think much of it. I wrote it off as an injury I probably obtained while landing incorrectly jumping off a ladder.  This had occurred a few days prior, so I assumed it was that.  When my boss walked in to work that night she had asked me how everything was going.  I informed her of my pain and difficulty walking but she didn’t seem to care.  After being denied my request to leave work early, I suffered through the pain and made sure that all of management duties were completed.  I was hoping that the following day would be better, but I woke up that Saturday morning with the same pain.  I had no idea that this was something that would be a part of my life forever.

When the pain failed to subside, I thought that it was time to see a doctor.  The first doctor I went to conducted some tests.  Nothing was found in said tests, so I was sent on my way.  Seeking a second opinion, I went to another doctor who seemed determined to get to the bottom of the issue I was having.  Test after test, surgery after surgery, I was starting to lose my mind.  Nothing was working!  Six months and two surgeries later, I still had that same excruciating pain.  The swelling resulting from the surgeries made my pain even worse and all I wanted was for it to go away.

After what seemed like the 100^th test, I had multiple doctors examining me.  After exchanging quick glances, they left the room.  Upon their return, they stated that they believe that I have RSD, but they couldn’t be too sure.  They said they would conduct more tests and that I shouldn’t worry my parents until they can confirm this diagnosis.  To my dismay, the doctors were correct.  They eventually confirmed that CRPS had inhabited my lower left leg.

Since being diagnosed, I have suffered through more treatments than most people go through in a lifetime.  I have seen twenty-two doctors, undergone seven sympathetic nerve blocks, had a SCS implantation and revision, went through five days of ketamine infusions, years of physical therapy, a great deal of medication including experimental drugs, acupuncture, AND a DRG trial.   At this point, the condition has spread to pretty much all of my extremities.  As you can tell I try to fight my way through this.

I have gone through a great deal of phases over the past few years.  I started off feeling sorry for myself.  I would tell everyone what was going on and I would share a great deal of negative information on social media.  My posts were all about being sick and getting procedures and tests done.  I guess I wanted everyone to know what I was going through?  I must have been feeling sorry for myself and felt that if I shared the information I would get some added attention.

I went to see a new doctor at one point during the years.  Mind you he is one of the most “recognized” doctors in terms of treating CRPS.  He is the one who gave me the low dose naltrexone which is an experimental medication for the treatment of this condition.  He thought he was the CRPS guru and that his information was like some sort of gold.  During my consultation he told me that I was going to lose all my friends.  He said everyone was going to get sick of me and would eventually stop talking to me.  Definitely not information you want to hear from a doctor.  Thankfully, he is no longer my doctor, but he will forever be remembered and not in a good way.  Luckily, I proved him wrong!

After feeling sorry for myself I would share a great deal of articles I found on social media, thinking I was spreading awareness.  I would send articles to my parents hoping they would understand what I was going through.  I friended a lot of people with CRPS on different social media platforms and I would tell all my friends every little thing I was going through and everything that happened to me along the way.  This phase was certainly not helpful.  It seemed some people thought my attempt at promoting awareness was just me spreading negative energy.  I just wanted to be heard.  I wanted people to know what I was going through.  I found that the majority of people I friended were acting in a similar fashion to me in relation to their posts on social media.  However, these individuals were so depressing that I had to quickly unfriend them all.  People were clearly in a deeper hole than I was and I was just not mentally stable enough to see what they were posting it was way too much negative energy.  At that point felt like my posts could also become tiresome to others.

I have finally reached a phase that I think will stick.  I deleted pretty much everything from my social media accounts that states I have this condition.  I belong to a few Facebook groups that offer helpful information to me but that’s about it.  I go to CRPS walks that are close by and I occasionally write articles for the RSDSA newsletter.  I have a core group of friends who care deeply about me.  These individuals know what I am going through, they have seen me at my worst and they have seen me at my best.  Luckily, it is always a judgement free zone with them.

I have learned to just stay strong throughout the years.  I have learned the importance of my friends and family.  I rarely/never complain about how much pain I am in.  My family and friends know I am going through something incredibly tough.  I don’t really tell any new people I meet that I have one of the most painful conditions in the world.  I still go out with my friends and do things that “normal” people do.  Talking about it is depressing and nobody likes a depressing person.  They will most likely gravitate away from you and having friends is very important for mental health which is INCREDIBLY important in your battle with CRPS.  Your mood may not directly correlate with your pain level, but it is definitely easier to deal with your pain when you are in a better mood.  I don’t know why I developed this disease, but I do know it has made me a lot stronger.  I try my best to stay positive and spread positive energy.

By Dr. David Brady

This blog was initially titled Complex Regional Pain Syndrome- What Is It And What To Do About It. It was featured on Fibrofix. To learn more about Dr. Brady, you can click here. Here, Dr. Brady writes about what Complex Regional Pain Syndrome is and how to approach it.

Chronic pain affects more individuals than diabetes, cancer, and heart disease combined and yet its origins can be so elusive that an accurate diagnosis of a chronic pain syndrome can be difficult. Determining precisely what you are experiencing and identifying the cause of those specific symptoms is undoubtedly important to unweave the complexity of chronic pain syndromes and find the treatment approach that best addresses your specific condition.

Complex Regional Pain Syndrome

One less common, but severe, chronic pain syndrome that requires early attention is known as complex regional pain syndrome (CRPS). It was formerly called reflex sympathetic dystrophy (RSD), but as research progressed, RSD seemed to only represent a subset of a larger syndrome. This discovery led to the introduction of two new chronic pain syndromes: complex regional pain syndrome type 1 (CRPS 1), formerly known as RSD, and complex regional pain syndrome type 2 (CRPS 2), formerly known as causalgia.¹

CRPS Defined

Like most chronic pain syndromes, CRPS is often confused with similar conditions including fibromyalgia and regional pain syndromes. Its central feature is severe, often debilitating pain in one or more limbs. Usually arising from an injury, surgery, and sometimes illness, the pain seems to be out of proportion to the severity of the cause. Occasionally, CRPS develops spontaneously.

The pain receptors of the affected limb are hypersensitive causing immense pain when triggered by a stimulus that doesn’t normally provoke pain such as contact with clothing, bedding, wind, and water. The pain may be described as burning, throbbing, or sharp. The skin temperature of the affected limb may alternate between hot and cold, and temperature hypersensitivity is common. Changes in skin color and texture, and abnormal hair or nail growth are often visible. Sometimes, CRPS is accompanied by bone and muscle abnormalities.

CRPS 1 arises from a generalized illness or injury and represents most CRPS sufferers, while CRPS 2 is linked specifically to nerve injury. It has been suggested that many of the symptoms of CRPS are rooted in inflammation, poor oxygenation of the affected tissue, and abnormalities in the brain, and central and peripheral nervous systems.²

If left untreated, decreased mobility, muscle wasting, and muscle contracture can ensue, making it critical to get a quick and accurate diagnosis, as well as appropriate treatment. CRPS often leads to sleep disturbances and emotional stress, both of which exacerbate the symptoms of CRPS, causing a vicious cycle that leads to poor quality of life. Occasionally, CRPS will resolve spontaneously, but relapses can occur and the symptoms can affect other limbs.

Management of CRPS

Traditional treatment of CRPS focuses on symptom management and is limited to the use of physical therapy, epidural infusions, steroids, non-steroidal anti-inflammatory drugs (NSAIDs), and mild analgesic drugs to relieve pain. Sadly, these options do not seek to address the root causes of heightened pain perception.

As the research of CRPS continues, various ideas regarding the cause of CRPS lead to experimental treatments. For example, in response to the proposal that CRPS may be an autoimmune condition, therapies targeting the immune system have been attempted including intravenous immunoglobulin (antibody) treatment³ and a plasma exchange.⁴ Spinal cord stimulation is also used to reduce pain, but doesn’t provide long-term relief.⁵ As with the traditional treatment approaches, these options ignore the complex interaction between all body systems and do not focus on comprehensively supporting the whole body. Therefore, they fall short.

The lack of successful therapies for managing CRPS point to the need for a more comprehensive approach that may be found by taking a step back and considering the underlying biochemical, physiological, environmental, and psychological factors that influence pain perception, inflammation, immunity, and tissue healing. Functional medicine presents a perfect paradigm whereby we can help correct root causes of pain associated with CRPS, rather than focusing on temporarily patching the pain.

Heightened pain perception can be rooted in a malfunctioning neurological system or a structural problem, but it can also arise from chronic inflammation, of which pain is a primary symptom. In fact, multiple studies have shown persistent inflammation associated with CRPS, evidenced by significantly elevated levels of inflammatory factors in the blood, blister fluid of affected limbs, and in the cerebrospinal fluid of CRPS sufferers.⁶ Chronic pain is often associated with inflammation and points to a confused immune system, which regulates inflammation in the body. Functional medicine focuses on restoring balance to the immune system to reduce inflammation using natural methods such as an anti-inflammatory diet, proteolytic enzymes, omega-3 fatty acids, bioflavonoids, and botanicals that target the inflammatory pathways of the immune system to reduce inflammatory factors.

Pain perception is a function of the brain and nervous system; therefore, a comprehensive and functional approach to managing chronic pain would explore the possibility of anomalies in these organ systems and seek to support them accordingly. Magnetic resonance imaging (MRI) scans of the brains of individuals with CRPS show decreased amounts of gray matter in the areas of the brain and limbic system responsible for pain perception and emotions, similar to findings from other chronic pain syndromes such as fibromyalgia.⁷ A functional approach to managing these structural anomalies provides dietary and nutraceutical support to help build brain matter while reducing destructive agents (toxins, allergens, etc.) that may hinder healing and function of these organ systems.

Chronic pain syndromes such as CRPS are emotionally challenging and often exacerbated by stress, anxiety, mood disorders, and disturbed sleep. Both emotional and physical trauma influence the development of neurological pathways that are linked to pain perception. Therefore, it is important to address emotional and lifestyle habits that may be reinforcing negative pathways in the brain and enhancing pain perception. A comprehensive and functional approach to reducing pain addresses stress-management, sleep habits, relaxation, and hormone or neurotransmitter imbalances that may affect mood and emotions.

CRPS is one of many chronic pain syndromes that share a host of symptoms stemming from complex functional, biochemical, and/or psychological roots. There is a great need for a comprehensive approach to symptom management – not a drug to cover the pain, but an inside-out approach. This approach will first determine precisely what you are experiencing, identify the cause of those specific symptoms, and then comprehensively support the body’s structural, biochemical, and psychological needs to foster healing. By addressing the root causes of CRPS such as inflammation and structural anomalies with dietary and nutraceutical support, detoxification, stress-management, sleep support and relaxation techniques, the whole body is given the opportunity to heal and quality of life is significantly improved.

So, what steps can you start taking to reduce pain, increase function, and foster healing?

1. Begin Consuming an Anti-Inflammatory Diet. This first step will lay down a foundation of health by which all other actions can work more successfully. An anti-inflammatory diet focuses on fresh, unprocessed, whole foods. Avoid packaged, boxed, canned, and prepared food items which contain inflammatory preservatives and additives. Make the bulk of your diet fresh vegetables of various colors. Consume fresh, cold-water fish such as salmon a few times each week. Avoid commercial and processed meats, choosing pastured, grass-fed meats, instead. Use plenty of healthy fats such as olive oil, coconut oil, avocado or hemp oil. Use beans and legumes in place of inflammatory grains, and be sure to drink 6 to 8 glasses of pure water each day, perhaps with added lemon to encourage detoxification.

1. Reduce Your Stress Level. Chronic stress initiates inflammation and pain, and yet it so easily intrudes upon our lives. Schedule daily meditation, prayer, deep breathing, and time to “empty your mind” and reflect on positive things in life. Keeping a gratitude journal is a proven way to encourage positive thinking, which is vital for healing. Don’t overcommit and make sure you are setting aside adequate time for supportive relationships. Enjoy nature and take walks outdoors. Both the sounds of nature and smells of essential oils from trees and herbs can help reduce stress. Soaking in a hot, magnesium bath will also encourage rest and relaxation. Adaptogenic or calming botanicals, and nutrients to help reduce stress may include:

• Magnesium, 500-1,000mg per day in divided doses (malate or glycinate form preferred)
• Valerian, passion flower, skullcap, and/or lemon balm, 100-200mg per day each

1. Get Adequate Sleep. Sleeping at least 8 hours each night encourages healing and restoration of all organ systems and is required for chronic pain conditions. Restoration best occurs when you sleep between the hours of 10pm and 6am. Unfortunately, most people have trouble falling asleep or staying asleep. Minimizing exposure to blue light from electronics will encourage melatonin production so you can fall asleep. Sleep in a dark room and begin relaxing at least an hour before you retire. If you battle insomnia, try resetting your circadian rhythm with the following:

References:

1. Todorova, J., Dantchev, N., & Petrova, G. (2013). Complex Regional Pain Syndrome Acceptance and the Alternative Denominations in the Medical Literature. Medical Principles and Practice, 22(3), 295–300. http://doi.org/10.1159/000343905
2. Palmer, G. (2015). Complex regional pain syndrome. Australian Prescriber, 38(3), 82–86. http://doi.org/10.18773/austprescr.2015.029
3. Immunoglobulin Treatment for Complex Regional Pain Syndrome. (2017). Annals of Internal Medicine, 167(7). doi:10.7326/p17-9046
4. Aradillas et al. (2015). Plasma Exchange Therapy in Patients with Complex Regional Pain Syndrome. Pain Physician, 18(4), 383-94.
5. Kriek, N., Groeneweg, J., Stronks, D., & Huygen, F. (2015). Comparison of tonic spinal cord stimulation, high-frequency and burst stimulation in patients with complex regional pain syndrome: a double-blind, randomised placebo controlled trial. BMC Musculoskeletal Disorders, 16, 222. http://doi.org/10.1186/s12891-015-0650-y
6. Parkitny, L., McAuley, J. H., Di Pietro, F., Stanton, T. R., O’Connell, N. E., Marinus, J., … Moseley, G. L. (2013). Inflammation in complex regional pain syndrome: A systematic review and meta-analysis. Neurology, 80(1), 106–117. http://doi.org/10.1212/WNL.0b013e31827b1aa1
7. Barad, M. J., Ueno, T., Younger, J., Chatterjee, N., & Mackey, S. (2014). Complex Regional Pain Syndrome is associated with structural abnormalities in pain-related regions of the human brain. The Journal of Pain : Official Journal of the American Pain Society, 15(2), 197–203. http://doi.org/10.1016/j.jpain.2013.10.011

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Written by Tara Packham, Ph.D., OTReg (Ont) for the RSDA blog.

Postdoctoral fellow, Michael G. DeGroote Institute for Pain Reearch and Care.

McMaster University, Hamilton, Ontario Canada

Allodynia is formally defined as a painful response to a stimulus that does not normally produce pain.  This includes painful feelings in response to 1) light touch such as a caress, or the stroke of a cotton ball; 2) temperatures that would normally be comfortable (like cool water from the tap, or the warmth from a mug of coffee); or 3) gentle pressure, like wearing a sock or a bra.  In the Budapest criteria for complex regional pain syndrome, allodynia is considered both a sign (something that can be measured) and a symptom (something the person reports experiencing).  While we don’t have exact numbers on how many people will experience allodynia across the course of their condition, we do know about half of people who come into a pain clinic for treatment of complex regional pain syndrome (CRPS) have this painful sensitivity.  Allodynia is not unique to CRPS: it is seen in many other forms of chronic pain.  However, when someone with CRPS has allodynia, it can interfere with the very treatments that could otherwise help.  For example, it is hard to work on stretching a stiff joint if it hurts just to have the therapist touch your skin, or when putting your arm in a warm whirlpool bath feels like burning knives.  Practically, it can be hard to even get out of the house if it hurts to wear a coat or footwear.  So, finding treatments that can make allodynia decrease or disappear is important.

“Somatosensory rehabilitation for pain” [#NeuroPainRehab] is a treatment method that includes strategies to help therapists and other health care providers assess and treat allodynia.  This idea was developed by an occupational therapist in Switzerland, Claude Spicher [@ClaudeJSpicher]. He observed that persons who had neuropathic pain (that is, pain resulting from some form of injury or damage in the nervous system) always had an area of numbness or decreased sensation to touch: but in some people, this area of numbness was hidden by an area of painful sensitivity – allodynia – on top.  By carefully testing for these areas, Spicher was able to identify what specific nerve branch was most likely to be injured or damaged, because of where the sensation was changed.  But instead of trying to stimulate that cutaneous nerve directly over the area that was painful, he asked his patients to use comfortable somatosensory stimulation (like rubbing or stroking with soft fur or silk) on an area of skin related to the same nerve, but away from the injury, so the feelings were normal.  In simple terms, this intense (but comfortable) stimulation would over-ride the painful sensations from the area of damage, and allowed the spinal cord and brain to start responding more normally.  Once the somatosensory nervous system started to respond better, then pain would reduce, and often the area of allodynia would shrink, and numbness would be revealed around the borders.  Then the person could start to work on somatosensory re-education, the usual therapy activities for improving numbness.  However, the sensory re-education was only used for numb areas, and not the area of allodynia.  In fact, people were encouraged to touch the area that was painfully sensitive as little as possible, so the brain would not be constantly reminded how much it hurt to be touched.¹  But as soon as the allodynia went away, then they needed to begin touching the area with all sorts of comfortable textures.  This helps the brain to use the information the way it was intended: not as a painful warning signal, but to tell the differences between soft and hard, rough and smooth, wood and metal.

I first heard Claude Spicher speak about his ideas at an international conference for hand therapists in 2010.  I was working on my master’s degree studying how health professionals could to do a better job of assessing CRPS, and I really liked the careful way Spicher was assessing allodynia.  His ideas around treatment were very different compared to what others were doing at the time, but they made good scientific sense.  So we traded emails, and when he came to Montreal to teach, I completed the training and became a Certified Somatosensory Therapist of Pain (CSTP^®), because I wanted to really understand the overall approach.  I started using the method with some of my patients with persistent allodynia after hand injury, and liked what I saw.  But putting on my researcher hat, I realized we needed to do some formal research to see if it had the potential to help many people, and not just carefully selected individual cases.  Spicher graciously invited me to visit his clinic in Switzerland, and extract data from his records.  So I wrote up a proposal that was approved by my local ethics board, and went to work reviewing hundreds of records.  For this study, I wanted to know: How effective is somatosensory rehabilitation for allodynia in persons with CRPS of one upper limb?²   

          I reviewed every record at the Somatosensory Rehabilitation Centre in Fribourg, Switzerland from when it opened in July 2004 until my visit in August 2015.  People were referred to the clinic by a medical doctor, and assessments and treatments followed a detailed clinical protocol.  They attended a weekly treatment session and were seen on alternate weeks by two different occupational therapists, both trained in somatosensory rehabilitation.  I recorded the data from every patient who met the Budapest criteria for CRPS (this was done as part of their admission screening) in one arm, regardless of whether they attended every visit or completed the recommended course of treatment.

Patients with allodynia were assessed in 3 different ways:

1. the French version of the McGill Pain Scale (QDSA: this was converted to a score /100)
2. allodynography: this is a method of mapping or outlining the area of skin where a standardized 15g pressure stimulus felt painful, and
3. the rainbow pain scale: this also used standardized pressure stimuli to determine the severity of mechanical allodynia

I found 48 records describing patients referred for treatment who demonstrated allodynia accompanying CRPS.  70% were female, and the average age was 45 years.  The average area of allodynia was 66 cm² or about 10 square inches.  About 10% of people also had depression, anxiety, or post-traumatic stress disorder as well as CRPS.  People reported having pain symptoms for an average of 31 months before starting treatment, but this ranged greatly from one month to over 25 years.  On their first visit, people scored anywhere from 4 to 99 on the QDSA, with an average score of 48/100.  After treatment, the average pain score was 20/100, including those people that only came for part of the recommended therapy.  This was a statistically significant difference (p<0.001), and earned a rating for a strong treatment effect (ES=1.64).  In people who actually completed the whole treatment (an average of 81 days), the average pain score was 12/100 (range 0-44).  If treatment was completed as recommended (in 58% of the records I reviewed), then by definition, the rainbow pain score was 0/7 and the area of allodynia had completely resolved.  Only 5% of patients stopped treatment because they or the therapist were not seeing any changes; the rest either dropped out of treatment or had to stop coming to treatment because of other life or health issues.

What did we learn from this study?  To summarize what we found:

• Somatosensory rehabilitation reduces pain in persons with CRPS in one arm when supervised by trained therapists
• The allodynia completely resolved in the majority of cases, even though many people had pain for a long time before starting the treatment
• Although pain was reduced, not all pain was completely gone at the end of this treatment…as in, this is not a cure.

On the basis of looking at treatment records (which can only give us moderate strength evidence), somatosensory rehabilitation can reduce pain and may resolve allodynia.  Once the allodynia is gone, it may allow people to participate in other forms of therapy for their remaining symptoms.  However, we would have more confidence in this form of treatment if we found similar results in a prospective, controlled study, where the results were compared to results from another form of treatment in people with similar symptoms.  Studies called randomized controlled trials give us strong evidence when they are well done.  We would also have more confidence in the results if treatment was done by someone who was trained in somatosensory rehabilitation, but who didn’t have a part in developing the treatment.  This can be considered a potential source of bias, and when there might be bias, we have to say the evidence is of lower quality.  However, in the records we reviewed, there were 13 other therapists (besides Spicher himself) who treated the patients.

Because big randomized controlled trials cost a lot to run, it was important for us to be sure there was some evidence to support going ahead with a big study, even if that evidence can only be considered low to moderate strength right now.  One of the strengths of this study was that we included all the records, even people who dropped out of treatment.  Another strength of this study was everyone had been screened using the Budapest criteria, so we were confident every record we reviewed represented a person with CRPS.  This study became part of my PhD thesis at McMaster University on advancing rehabilitation for complex regional pain syndrome.

You can find the complete study on the Journal of Hand Therapy website at doi: 10.1016/j.jht.2017.02.007.  There is also more information, patient comments and many case studies available from an on-line newsletter for patients, therapists, medical doctors and neuroscientists on somatosensory rehabilitation at www.neuropain.ch.

1. Spicher, C., Quintal, I., & Vittaz, M. (2015). Reeducation sensitive des douleurs neuropathiques (3rd ed.). Montpellier, France: Sauramps Medical.
2. Packham, T. L., Spicher, C. J., MacDermid, J. C., Michlovitz, S., & Buckley, D. N. (2017). Somatosensory rehabilitation for allodynia in complex regional pain syndrome of the upper limb: A retrospective cohort study. Journal of Hand Therapy, 1–9. http://doi.org/10.1016/j.jht.2017.02.007