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Category: Guest Blogger for RSDSA

Seeing Is Not Always Believing: Perception and Chronic Pain

Gabe details how seeing is not always believing when it comes to chronic pain and perception. How do we ignore what others see?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.

Stages of Grief With CRPS

An anonymous blogger writes about CRPS and grief. How do they correlate and how did this writer cope with this diagnosis as a young adult? 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 100th 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.

Living with RSD- Never Give Up On Hope

Brenda discusses living with RSD while learning how to not give up on hope By Guest Blogger Brenda Refior

Brenda discusses her life before being diagnosed with RSD and all of the things she endured after a traumatic incident. Through all of this, Brenda is able to find hope and encourages readers to do the same. Find out how below.

Before I had RSD, I was a strong and happy person who loved life to the fullest. When I was nineteen, I tried out for an Olympic handball team at the Colorado Springs Olympic Training Center. I was accepted and asked to go to the Lake Placid training camp, but this conflicted with my wedding plans. I was young and felt that all of life was ahead of me, and decided not to go to Lake Placid. However, I continued to play sports and worked as much as I could.

In July 1983, I married and couldn’t have dreamed of a more beautiful wedding. A couple of years later, I started working for the local school district as a bus driver. I loved the kids and the people I worked with, and driving a school bus never got boring. But it was on a trip driving that school bus taking kids home at 5:30 at night that my life changed forever.

Stopping at an intersection, I pushed down on the accelerator, and five large sparks, fire and smoke covered my feet. I pulled over quickly, undid my seatbelt, and evacuated 25 kids from the bus.

Grabbing the fire extinguisher, I sprayed the bus as it filled with smoke, covering my body in white foam, as it floated back on me. Looking like a phantom ghost, I ran to check on the kids.

Since they hadn’t all grabbed their jackets, I jumped into the back of the smoky bus and retrieved them. No one stopped as I tried to flag down cars for help – they surely must have thought I was a ghost! Finally, police transferred the kids to a 7 Eleven where parents picked them up. I rode to the bus barn with the head maintenance supervisor. It was the most uncomfortable car ride of my life.

After receiving muscle relaxers for my aching arm, neck, back and stomach, I spent days getting worse. Most of the time, my hand was marbled and turned shades of blue and purple. It was colder than ice, yet it burned on fire, like thousands of little hot needles. Throughout this time, I continued to drive a school bus, received some commendations, and, I found out that I was pregnant!

My health got worse. My stomach burned and cramped, the diarrhea was unbearable, and I thought I was going to die. I ended up having an emergency gall bladder operation, and just two weeks later, an early C-section and exploratory surgery to see why I was having so much pain. They did not find anything.

A year later, my husband found me passed out on the bathroom floor. He rushed me to the hospital where I had major surgery. The doctors fixed a hiatal hernia, found a detached colon, (probably detached two years before when I put out the fire in the school bus), and took my appendix for the heck of it.

While in surgery, I flat–lined and they had a time bringing me back. I had a misty vision of four beings dressed in white. A strong voice said, “You will be judged, and you will judge yourself.” I thought of things that I knew were wrong that I had done to people in the past. I had to feel not only what it felt like to them, but also how it affected other people in their life. I just knew I had no chance to get into heaven. Then I got to see the good in my life. I felt the feelings of people I had been kind to or had helped, and I saw the ripple effect on other people in their life. I felt like I had made it to heaven, and I was so happy; I really can’t explain the feeling. Then the strong voice said, “You are not done. You still have something to do. You need to go back.” The next thing I knew, there was a nurse in the room and I told her what I had experienced. I asked her for a pencil and paper so I could write it down. This vision gave me faith, hope and inspiration.

Finally, in 1988, Dr. Toni McLallan, an expert on Reflex Sympathetic Dystrophy, diagnosed me with RSD. It was agony living with this pain for two long years, and nobody knew what was causing it. There was little known about RSD at the time. In the summer before I started my new job, I was strongly encouraged to spend a full month in Saint Francis Hospital’s Pain Therapy Program. There were two others in my group. I received pain meds and muscle relaxers right away. The other two were taken off their meds. It really scared me! I found out that one of them held up a pharmacy so he could get pain meds. He said he did it to make the pain go away, but he kept overdosing. Was I going to be like them in the future? Here I am on meds, great…! We swam in the morning and did physical therapy in the afternoon, and, in between, I had psychotherapy.

Bedtime was 9:00. I felt terrible that my two-year-old,Rachael, could only see me for a few precious moments a day. That was heartbreaking, to say the least. It was the longest month of my life.

I was in pain for two more years, and, once again, I thought I was going to die. My stomach burned and cramped, I had diarrhea and I couldn’t stop throwing up. I experienced sweating, passing out, and lengthy hospitalizations. I was no longer allowed to keep my job driving the school bus. It was making my right arm, neck and back pain worse. I missed driving and the kids so much. I loved that job. I was really down. I felt like I was inadequate and no good to anybody. I was offered a job in special education and I had to jump into it with everything I had, just to make myself feel like I was worth something.

While I hated to work and leave my daughter daily, my new job as a special ed. aide boosted my self-esteem. I worked there for three years and came to really love that job; the kids came to respect me. One young man I saw after school putting a butcher knife up his sleeve told me he was going to “take care of” the guy who had stolen his girl. I told him, “Listen, I’ll do my best to see that you don’t get into trouble over this at school, but you need to give me the knife.” In the end, he trusted me, listened to me, received a one-day suspension, and his uncle thanked me.

I suffered through a lot of pain working as an aide at the school. RSD was taking a toll on me. I’d work and then go home and crash. I would be in so much pain that I would come in the door after working all day and not be able to do anything at home. Poor Rachael wanted to spend time with me, but all I could do was take my meds and sleep. I joined one of the first RSD support groups in town for help. It scared me to join this group, being the youngest by sixteen years. All the ladies put their meds on the table and asked me, “What are you taking?” I kept quiet. I stayed with the group for two years, but found it a little intimidating and depressing. One woman, Shelley, had so much pain in her fingers that she could not move them. I promised myself that no matter how much pain I was in, I would work my limbs so I wouldn’t lose mobility. Let me tell you, the pain is so bad when your fingers and hands start to lock up, but you just do have to move them, because you won’t be able to use them otherwise.

Despite making a difference at school, my pain and exhaustion continued. RSD was taking a toll. The disease stole the job from me. I couldn’t do anything at home. This pain is like when one of your legs falls asleep and you have a painful tingling, achy, electrical feeling. The pain is extreme and lasts, not just seconds, but sometimes years! After four years of agony, I was willing to try a stimulator implant in my neck that would transmit an electrical current to the spinal chord. First, they put it on the Wrong Side! A month later there was a second surgery…even worse pain. I just felt like dying. This disease had robbed me not only of my health and job, but also of my ability to take care of myself. Thank goodness for my grandmother who was in her late eighties. She would say to me, “Let’s walk the mall. I need exercise!” So, we would walk the mall – and I thought I was helping her out! She was a wonderful woman.

Two years later, I discovered a doctor who agreed to take the stimulator out. I awoke from surgery and was able to use all my limbs – Thank God! I continued to see my psychiatrist who had me on meds, but I found real therapy in drawing and making mandalas, dream-catchers and presents. It gave me a sense of pride that I was able to give something I made to someone I loved.

Today, I go to a doctor who prescribes medicines that actually work. I’m able to concentrate better and control the pain better. My pain level is half what it was in my worst times. Sure, I have good days and some days my pain level is 5 to 7 on the pain scale, but I can handle that. My family and friends help me through the hard times, and now, I’m able to help them.

My faith in God and Jesus keeps me going all the time. It’s my faith and the memory of a promise that there is something more I have to do that gives me hope. There’s a reason I’m here right now, and it feels important for me to share my story. I want to tell others with RSD not to give up. Have a vision that supports you. My vision gave me hope. Never give up on hope.

Keep on going, no matter what. Don’t sit and lie down and die. Get up out of that chair, out of that bed. Keep yourself going. You’ve got to keep yourself going, and trust in God to help you make it through.

Complex Regional Pain Syndrome- What To Do About It

Dr. David Brady details what complex regional pain syndrome is and what can be done about it in this blog 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:
  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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Using Somatosensory Rehabilitation to Treat Allodynia

Tara Packham writes about Using Somatosensory Rehabilitation to Treat Allodynia, especially in CRPS 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

15 Tips For Healthcare Providers Treating CRPS/RSD

Melissa writes 15 tips to help healthcare professionals treat CRPS the most efficientlyBy Guest Blogger Melissa Wardlaw

As a patient with CRPS/RSD, I am lucky to have a pain-management physician I have been partnered with since 2004 whom I trust, who trusts me and who understands my complex medical issues. As I have visited many physicians and other specialists on my medical journey before and after partnering with him, clearly this hasn’t always been the case! Recently I spoke to an audience of healthcare professionals at a healthcare conference, and left them with this takeaway of some helpful treatment
tips I have comprised in all my years as a CRPS/RSD, chronic illness & pain patient.

1. Patients with CRPS/RSD are on individual journeys and every patient is different! Even though most patients have similar symptoms and the common theme is very severe pain that is greater and lasts longer than the scope of the inciting event/injury, these symptoms can vary in duration, intensity and overall disability. Also, many CRPS patients have comorbid (simultaneous) medical conditions which may bring additional challenges unique to treating each patient.

2. Be a Healthcare Partner! Because CRPS/RSD is so poorly understood with so many differences in opinions amongst practitioners, often times patients know more about CRPS/RSD than their practitioners; but they especially know more about THEIR individual conditions and how CRPS affects them. Listen closely. Educate. Find out patients’ goals. Help come up with strategies together that work specifically for each patient, thus being a partner in solution-oriented healthcare.

3. Treat the whole person instead of the disease! This means gaining insight into hormonal, endocrine, psychosocial, and biochemical processes to ensure the patients’ systems are in balance – this will allow the greatest opportunity for treating CRPS/RSD. If patients are generally healthy in the body and mind, they will be more apt to accept chronic healing.

4. Watch for supplemental symptoms and medical issues CRPS/RSD can cause! With the punishing, continuous and extreme physical stress and severity of pain/symptoms resulting from CRPS/RSD, patients may develop cardiac conditions, situational anxiety/depression, insomnia, PTSD, high blood pressure, diabetes, internal organ issues, IBS and the like. It is important not to ignore these additional symptoms and medical conditions that may arise.

5. The Goal of treating CRPS/RSD is to calm down the patient’s nervous systems, and not bring more stimulation to an already misfiring nervous system in overdrive! CRPS is similar to a PC motherboard being dropped in water and malfunctioning. Calming down the fight or flight response occurring in the patient’s body is necessary. This is accomplished through various methods, treatments, medications and coping strategies. However, beware of overstimulating the body further and treating patients as guinea pigs. Also, as every patient is different, what might work for one patient might not work for another. There is a reason CRPS stands for COMPLEX regional pain syndrome!

6. Primary goals of treatment are really three-fold:
a. To increase function/normalcy (this might be different for each patient)
b. To reduce pain/symptoms and gain better control over them (better management, not necessarily abatement)
c. To improve overall quality of life (not necessarily back to one’s “old life”)

7. CRPS/RSD is an INVISIBLE chronic illness (for the most part)! Most CRPS patients look/sound “normal” depending on other co-morbid medical issues. There can be some visible signs of illness; however symptoms may wax and wane. In the goal of fitting in with society, many patients have learned ways of hiding or masking their visible signs of illness & disability. It is important to ask patients to describe symptoms disabling to them (and why), and have them document and take
pictures of visible and invisible symptoms, and bring this information to their appointments in an effort to maximize time.

8. Help patients find additional specialists and resources to aid in their overall chronic (and general) health.
These may include:
a. Chronic Illness & Pain (and Grief/Loss) Counselors, Hypnotherapists, Psychiatrists, etc.
b. Physical (Water) & Occupational Therapists, Pilates/Yoga, Tai Chi Instructors, etc.
c. Naturopathic Practitioners (i.e., Acupuncturists, Nutritionists, Massage Therapists, Chiropractors, etc.)

d. Interventional Pain Management Physicians, Neurologists, Endocrinologists, Rheumatologists, Hormone Specialists
e. Support Groups (both in-person and online), Churches, Friends/Family, Service Animals, etc.
f. Online Resources & Patient Advocacy Groups (i.e., RSDSA, RSDHope, US Pain Foundation)

9. Be Kind, Empathetic & Compassionate! You may not have all the answers, however what may help patients the most is a healthcare professional who treats them with respect and takes the time to listen, understand, not judge or make them feel their illness/pain is “all in their heads,” because it is not! You would be surprised just how much a little compassion and kindness can help a patient (of any kind), especially one who is having a bad day.

10. Be Honest! If you don’t know what to do to help the patient, tell them this, but be prepared to refer them to someone who can. A patient will respect you much more if you are honest and sincere, but in a respectful manner.

11. Help set realistic goals! Many times patients have the goal of “fixing” or curing CRPS/RSD (which is an incurable illness) and getting back to their old lives. Sometimes they may see this as the only option with treatment. Helping to reset their expectations and mindset goes a long way to the overall management of the disease. While remission is possible, it is rare and flares are common. Working WITH the disease as opposed to AGAINST it will go much further than trying to completely eradicate it. That way if remission does occur, it is a huge bonus!

12. The best options for treatment are multi-faceted! Educate the patient on the many options they have, from the noninvasive to invasive and everything in between. There may be some residual (justified) fear about procedures and the like, so take cues and respect patients’ comfort levels, while encouraging them to work through them at the same time.

13. Opiates are ok! While opiate medications should not be the first choice for CRPS/RSD (or any illness), many CRPS patients are successfully treated long-term with opiates, especially if co-morbid chronic illness & pain conditions exist. Most CRPS patients present with very severe, continuous and disabling pain; and while CRPS has no specific medications of its own on the market, opiates are made specifically to treat pain. The key is to educate the patient/caregiver(s) on the pros/cons of opiate therapy, and screen/monitor for risk factors. Most statistics put legitimate patients becoming “addicted” to opiates around 1-3%; this is extremely low, so don’t be intimidated or scared to use them as part of an overall multi-modal pain management strategy. First and foremost, your duty as a healthcare professional is to help the patient and “do no harm.”

14. Most CRPS/RSD patients are educated, professional members of society! We are mothers, fathers, sisters, brothers, sons and daughters. CRPS/RSD is a devastating chronic illness, often changing patients’ lives in a split second and robbing us of our careers, activities, family lives, educational pursuits, relationships and life purposes up to that point. It isn’t called the “suicide disease” for no reason. The pain does get that bad. It is important to understand that many patients are going through the most difficult time of their lives, as are their families and loved ones. The loss and grief is palpable. Helping them to focus on the good they do still have in their lives is critical to survival. Professional assistance is very helpful, not only for patients, but also for spouses/caregivers and loved ones because their lives have changed dramatically also.

15. Encourage patients to continue on with normal activities as much as possible! With the all-consuming nature of CRPS/RSD, it has a tendency to take away patients’ abilities to do things they used to do. However, the more they can participate in tasks they enjoy and love, the more it will help with overall healing and finding a purpose again. Finding activities that distract the pain and allow for natural endorphins to kick in, the better patients will feel, at least temporarily, and thus will slowly gain strength and control over the long term effects of CRPS/RSD. It will be a multiplier of confidence and positivity that will show patients they are not defined by their disease(s) and are still valued members of society!

NOTE: Opinions expressed are solely my own and do not represent the views or opinions of other CRPS/RSD patients or practitioners.

Bio:
Melissa Wardlaw was diagnosed with CRPS/RSD (now full-body involvement) as a result of a spinal cord injury suffered in 2002 during routine epidural steroid injections. She also has fibromyalgia, lumbar/cervical degenerative disk disease, migraines and additional chronic medical issues. Formerly a high-powered Business Executive & Consultant in start-up operations and HR, Melissa has an MBA in entrepreneurship, is a Certified Career Coach and Certified Professional Resume Writer, and now spends her time career coaching and offering peer support/counseling & advocacy (pro bono) as her health will allow. She also runs both in-person and online support/empowerment groups for CRPS/RSD, chronic illnesses & pain in Metro Atlanta. Melissa is also an avid volunteer and supports multiple organizations committed to rescuing animals and helping others with chronic illnesses & pain. She has two Ragdoll cats, who graciously “allow” her to live in their brand new home in Atlanta, GA.

Contact Information:
Melissa Wardlaw, Atlanta, GA
Email: [email protected]

The Young Chronicle: Ophelia

The Young Chronicle features Ophelia, who discusses ableism, assistive devices, and being young with CRPS / RSDWritten by Ashley Epping for the RSDSA blog.

Ophelia is a 19-year-old who developed Complex Regional Pain Syndrome at only nine years old, is from Ontario Canada and uses the pronouns they/them/their. They were originally told by a doctor that they were only experiencing growing pains. They reflected on the experience saying “I always knew it was not growing pains because growing pains do not put you in a wheelchair”. Ophelia’s pain started in both knees and has now spread to their entire body. In 2013 they went into remission after a stay at the Children’s Hospital of Philadelphia in their chronic pain program; but the pain returned a year later and it came back full force.

Currently Ophelia spends a lot of time conserving their energy at home, but they are able to become more mobile with their wheelchair, without which they would be stuck in bed. We openly spoke about what life is like with CRPS when you are not able to fully function, when you need assistive devices and when the pain becomes incredibly discouraging.

How was the transition to using a wheelchair?

“Losing my mobility to a wheelchair was hard, but at the same time it was freeing. Assistive devices are so stigmatized, and it is hard becoming okay that you need a wheelchair but once you do, you are so free.”

Q. Have you found support through online CRPS groups?

“Yes, I have found people of all backgrounds, going through all different kinds of therapies or no therapy at all and everyone is living with it, which is amazing.”

 What was your experience at the Children’s Hospital of Philadelphia?

“It was very difficult because we were put through a lot of physical pain and emotional stress, but most of the friends I made in the program are currently doing well.”

 What are your tips and tricks to getting through a bad pain day?

“I watch a movie or videos online to distract myself, I always listen to music at night to fall asleep, and my therapist is a go-to.”

“It is hard becoming okay that you need a wheelchair but once you do, you are so free.”

We further discussed what it is like as someone with low mobility to read and see others with CRPS doing fully functioning activities. Through our discussion we came to the conclusion that it is a difficult topic because we all fluctuate within our own ableism. Sometimes jealousy can sneak into play because everyone wants to be able to do as much as possible. For a long time, Ophelia only needed to use a cane to be mobile, as they said: “I have been in other people’s shoes before but have become worse to where a cane is no longer an option”. There is no pain exactly alike, but we are stronger when we support each other because there will always someone who understands what is happening.

With online media making it possible to participate in any fashion, Ophelia has gained a significant following on their Instagram and specifically Twitter account. I did ask which platform they most prefer and they laughed and said “I use Twitter the most because when you are stuck in bed you don’t have that many photos; there’s only so many photos of my wall that I can post”. Ophelia’s motive towards social media is about educating people on CRPS. They know that this is not something you learn about in school or from your parents and therefore people like them are a great source to learn about these topics. It is a place of community, “I have friends and followers who are also disabled, have CRPS and/or chronic pain and we can all just feel it together”.

“I have friends and followers who are also disabled, have CRPS and/or chronic pain and we can all just feel it together”.

Through dealing with CRPS, Ophelia has become an activist and advocate. They have shared with me that always having something to look forward to is important. They are currently looking forward to a trip to Disney World, but small things like ice cream or a movie night work perfectly. I am sure that Ophelia will continue to educate and connect with other warriors like them.

CRPS Awareness Day 29: Restaurateur Gets CRPS

Our anonymous author writes about getting diagnosed with CRPS while working in the restaurant world in their early 20s. By Anonymous for the RSDSA blog

My life truly changed when I was 23 years old. As I look back, I realize that I was in my golden years. I just completed my bachelors in Food Service Management from Johnson and Wales University. Even at a young age, I was interested in food so I decided to pursue my passion and turn it into a career. As a manager for Darden Restaurants, I led the region in guest services while also teaching other restaurants what practices I followed to ensure a great guest experience. I worked ten hour days, five days a week, and was on my feet about 90 percent of the time. It didn’t bother me though. I had a good job, a great girlfriend, and an incredibly supportive family so you could say that my life was pretty amazing. I was able to do everything that I loved and I felt like nothing could stop me. I was even looking to advance in my field which would have enabled me to grow as a person. The world was in my hands up until March 2014 when the world seemed to stop moving.

It was a Friday afternoon and I was finishing up the morning shift at the restaurant. I was standing in the front greeting customers with the hostess when an excruciating pain took over the lower part of my left leg. Unsure of what was happening to me, I began to panic and didn’t know where to turn. I was trying to remember what I had done that could have caused this pain. I was always running around, lifting heavy boxes, and never really paid any attention to what it was doing to my body. I truly felt invincible and didn’t think that anything could slow me down. I had no idea that my whole life as I knew it was about to change. To make matters worse, I had a terrible relationship with my boss. When asked how everything was going, I confessed to her that I was having trouble walking. Instead of showing any type of concern, she laughed in my face and continued on her way. I was already in a panic and felt so alone after that encounter. Hoping that the pain would subside, I continued to push through my management duties. My crew kept insisting that I go get checked out as they were watching me limp around the restaurant. After struggling for three days, I decided that I was time that I went to the doctor.

For about a month after the first incident, I had undergone every test possible. X-rays, MRIs, sonograms, bone scans, blood tests, you name it, I’ve done it. I went to physical therapy, tried acupuncture, had a bunch of steroid injections. Nothing helped at all. My doctor then tested me for a condition called Exertional Compartment Syndrome which normally rears its ugly head in car crash victims. All of my doctors had exhausted all of their options and this was the last thing that they could think of. I had tested positive. I was ecstatic that they had figured out the problem and I was one step closer to the solution. I just wanted to get better so I could go back to work. A month later, I underwent a successful surgery. Unfortunately, during said surgery, they found a split tendon that one of my prior tests had missed. They had placed me in a soft cast and I was unable to put pressure on my foot for over a month. The biggest problem, however, was that I still had that same pain in my lower leg. I knew something was still wrong. Everyone kept telling me it was just side effects from the surgery, but my gut was telling me differently.

A few months later, my doctor went in and repaired my split tendon. Yet again, the same pain that everyone kept dismissing was still apparent. The day before Thanksgiving of that same year, I fell off of a balancing device while at physical therapy. This fall caused me to sprain my ankle in the same leg and I was told that I would feel better in a week or two. I was honestly getting tired of being told that it would get better when it wasn’t getting better. It was really easy for someone to say this when they had absolutely no idea what I was going through. Despite my feelings, I continued to push through and remained positive as I was recuperating.

2015 rolled around and I was hoping that this year would be better than last. The pain was so severe that I couldn’t even put my feet under the sheets due to the sensitivity. My foot was so swollen that I could no longer wear shoes, even though I kept buying new ones to try and make myself feel better.  Crocs were about all that would fit me so I used those and my crutches to try and make a new fashion statement. I tried to remain positive and kept hoping that things would get better. During one office visit, I had two doctors examine me. I knew that something was up when they looked at each other and then left the room abruptly. Upon their return, I was told that there was a chance that I had RSD. ”What is RSD?” I asked. I have never heard of this disease before. My doctor told me that he wasn’t diagnosing me and that it was just a theory. He told me not to worry my parents, so naturally, I told them immediately. I still didn’t know what it was and couldn’t bring myself to do any research on this mysterious three letter word. I was so scared for what I might find and didn’t want to worry more than I already was.

In March of the same year, I visited a specialist to determine whether or not I had RSD. He examined my now purple foot and stated that I did, indeed, have RSD. He told me that he would perform a nerve block in my back. After being injected twice, my pain remained the same and on some days, felt worse. The next step would be for me to get an implant in my back. This was supposed to trick my brain into thinking that I was not in any pain. At 24 years old, this wasn’t at all where I thought I would be. An implant? This is insane! I hesitated at first but the pain was becoming too much to bear and I was desperate for a way out. Before being diagnosed family members thought that I must just have a low pain tolerance or maybe I was looking for attention. Some even thought that it was all in my head as I kept getting test after test and everything came back negative. I began to wonder: Was it? Am I losing my mind? At that point I didn’t know what was worse, the constant pain I was feeling or the fact that I might be on the brink of a mental breakdown due to what people were saying.  I even lost people who I thought were my friends. Its funny how when you are at your lowest, people who you thought cared suddenly disappear. Cliche, I know, but this experience has proved it to be true. Not knowing where to turn or who I could lean on during all of this made my journey even worse. I grew more and more depressed everyday and was just hoping that one day they will find a cure.

In August of 2015, an electric box was surgically implanted in my back. The pain after that surgery distracted me a little from the foot pain I was still experiencing. Lucky me, right? The good news is, I was able to start walking again. Physical therapy became a little easier, but the pain was still there. I was given a vast amount of narcotics to ease said pain. Friends and family cautioned me about taking these drugs for they are extremely addicting. This made me even more paranoid and depressed. Is this pain worth the risk? My body was screaming yes but my head was saying no. In the end, I caved. I couldn’t live every day with this pain and I still struggle up until this very day.  Although these narcotics do allow me to function, I am definitely not addicted.  I do see why people say and think what they do, but luckily I have an incredibly strong mental capability to just take them as prescribed even when my body screaming at me to take more to lower my pain.  I actually take less then my doctors prescribe just because I fear my body will become dependent and I will need to increase my dose. This was the last thing that the doctors could do for me. Anything else that may come up would be experimental.

Lets fast forward to today.  Since being diagnosed with CRPS of the left ankle, my pain spread my leg throughout my entire body. I also have tried numerous ways to make living with CRPS easier. My medications have changed consistently. I recently tried a new implant called a DRG stimulator which works with a special bundle of nerves in your back. Fail. The list also includes Ketamine infusions which is a highly dangerous street drug, medical marijuana, narcotics, physical therapy, mental therapy, meditation, even special shoes. Just a few months ago, I started a new diet called the auto immune diet, also known as, ‘you can’t eat anything’ diet. They even exclude basic seasonings! This is the worst for someone who has such a passion for food. I am willing to give anything a shot at this point so we will see what happens with that. This condition is incredibly debilitating. My mind is in a complete fog most of the time. I am constantly losing things, forgetting things, and hurting myself.

I have finally accepted that I have this condition and it isn’t going anywhere.  The only catch is, I can’t do too much for too long. After a few short hours, I need to retire to my bed for the rest of the day. I joined support groups with others living with CRPS as I try and find new ways to cope. Sometimes hearing another person’s journey can help me through mine. It also helps to express my feelings to people who understand exactly what I am going through. Over time, my family and friends have realized that this condition is serious and I am not in control. I am lucky to have their support though. They are honestly the only thing that keeps me going. I try my best to stay as positive as possible and do whatever I can to better myself. If I learned one thing over these past years, it is that health is really the most important thing in the world. All of the money in the world would not be able to change my situation. I know that there are people out there battling this condition with me and it’s not an easy battle. I just hope that one day they will find something that can either cure or ease our pain. Until then, keep fighting my fellow warriors. I know that I will never stop.

CRPS Awareness Day 28: Neuromodulation and DRG

Dr. Deer discusses neuromodulation in the form of DRG for CRPS treatmentBy Dr. Timothy Deer

CRPS/RSD is a debilitating painful condition affecting thousands of patients.  Chronic pain as a result of CRPS not only impacts the patient, but the patient’s family and loved ones as well.  Many are forced to give up work or other meaningful life and family activities due to the ongoing persistent pain.  Many CRPS patients continue to suffer extreme pain and limited function in spite of receiving the correct diagnosis and appropriate care.

Treatment guidelines for CRPS exist and have been widely published and accepted in the national and international medical community.  Those guidelines start with conservative care including physical therapy, nerve-pain medications, supportive counseling, and in some cases nerve blocks.  For patients not responding to those treatments, neuromodulation therapies are considered.  Neuromodulation is the application of electrical signals to the nervous system to control chronic pain.  The first studies to demonstrate neuromodulation’s favorable impact on severe CRPS are now over a decade old.  A new neuromodulation technique called Dorsal Root Ganglion (DRG) stimulation has been evaluated and found effective specifically in the treatment of CRPS.

The ACCURATE clinical study is the largest randomized, controlled neurostimulation trial conducted in patients with complex regional pain syndrome (CRPS) and peripheral causalgia, to assess the safety and efficacy of dorsal root ganglion or DRG stimulation in the treatment of chronic, intractable pain (defined as difficult-to-treat pain that has been present for a minimum of six months). There were 152 subjects with chronic, intractable pain of the lower limbs enrolled and randomized in the ACCURATE clinical study. They were randomized to a DRG stimulation group or a control group (using a traditional neurostimulation device) across 22 investigational sites. The ACCURATE clinical study was designed to measure whether a new type of neurostimulation, called DRG therapy, can help more patients with difficult-to-treat isolated pain caused by CRPS of the lower limbs. This kind of pain may be focused in a lower extremity (foot, knee, hip or groin); it is believed to be a problem in the nervous system affecting the way pain signals are sent between the brain and the rest of the body. But for patients with CRPS, traditional pain management methods— including traditional neurostimulation— often don’t work. All 152 patients enrolled and randomized in the ACCURATE clinical study experienced chronic pain in a lower extremity. The pain typically began after an injury, surgery, or other medical intervention and continued for six or more months.  The goal of the ACCURATE clinical study was to demonstrate safety and efficacy of DRG stimulation as compared to traditional neurostimulation.  What were the results of the ACCURATE study? 86% of DRG patients had persistent pain relief at 12 months, vs 70% in the control group.  DRG patients had an average of 81.4% reduction in their pain at 12 months and 94.5% of DRG patients did not experience stimulation outside the area of pain at 12 months.

When a patient is felt to be a DRG stimulation candidate, a trial procedure is scheduled.  This is done on an outpatient basis, where the stimulating lead or wire is carefully placed near the DRG structure at the appropriate location for that patient’s CRPS pain. This temporary lead is kept in place for about one week to determine the patient’s response to therapy, and to decide whether to implant the long-term DRG stimulation device (which is similar to a pacemaker, see figure X). This trial period is an important feature of DRG stimulation allowing the patient the opportunity to evaluate the effectiveness of the therapy before making a decision on implant in collaboration with their physician.

Follow up information at one year suggest the patient has a better than 80% chance of reducing or eliminating their opioids. This is done most effectively when DRG is used as part of a multimodal treatment plan using physical medicine, counseling and other modalities.

CRPS Awareness Day 27: CRPS, Function, and Rehabilitation

Michael Sullivan discusses CRPS Function and rehabilitation and the importance of functional restoration in chronic pain. Sullivan has a Masters from Duke UniversityWritten by Michael Sullivan PT, MSPT for the RSDSA blog.

How important is movement to our health and wellbeing? A dark lesson starting in medieval times and running into the mid-1800s is provided by the numerous inquisitions, the most famous being the Spanish Inquisition.  For over 700 years torture was used to induce people to confess to their heresies, recant their heathen ways and profess their faith in God. Torture was used to speed up the process. One of the most effective means of torture was the use of constraints to restrict a person’s ability to move. Stocks, barrels, metal cages, ropes and chains were used to prevent movement. The tighter a person is bound, the less they can move, the greater the pain. Complete restriction of movement can lead to excruciating and unrelenting pain within twenty-four hours. People were known to go mad in a matter of days. My apologies if the thought of this alone is enough to make you cringe or feel discomfort (you can thank the mirror neurons in your brain) but this illustrates the importance of movement and highlights that pain is a consequence of immobilization.

One of the many issues that people with Complex Regional Pain Syndrome struggle with is that movement is painful, to the point where they don’t feel they have the choice to be active. Essentially, pain itself becomes the constraint that restricts movement resulting in more pain. As a result of this vicious cycle, CRPS sufferers can get into a downward spiral of functional decline that not only exacerbates their pain but seriously diminishes their quality of life. Fear of movement as a result of pain leads to avoidance of movement. My goal in writing today is to convince you that movement, while it may be painful, is good, and to share some strategies for restoring function. First, let’s look a little more closely at the pros and cons of not moving.

One of our responses to pain is to avoid movement to protect the injured area from further harm. In the early stages of injury this type of guarding is an adaptive response that helps us to heal. Depending on the injury, your doctor may even use immobilization to set up the conditions under which the damaged tissues heal. The simplest example would be casting a broken bone. In deciding how long to immobilize an injury there is always a trade off between the time that is needed for the tissue to heal and the deleterious effects of immobilization. Not only can immobilization be painful in of itself, it also is not healthy for many of our tissues. Muscles need to move and work to remain strong and flexible. Moving joints distributes synovial fluid that helps to lubricate and provide nutrition to joint surfaces. Nerves elongate and glide relative to the surrounding tissues when we move. Movement and interaction with our environment activates nerve endings, sending a constant stream of information to our brains for processing that are essential to brain health. Part of the healing process is the laying down of scar tissue as a means of repairing damage. Unfortunately, scar tissue is not very smart and while it strengthens the damaged tissue, it also can form cross-links to tissues that need to move in relationship to each other. The longer these cross-links remain in place the stronger they get and the more they can restrict normal movement. Importantly, movement is also necessary for the final phase of healing, a remodeling process that allows injured tissues to reorganize and gain maximum strength. When we continue to guard against movement after the initial healing process is complete, we are doing more harm than good, and the protective response becomes mal-adaptive. It is no longer helping us to heal. In short, our muscles, fascia, joints, nerves and brain all need movement to remain healthy and any immobilization, even of an isolated body part, beyond the minimum required for healing is not good for us. The consequences are most extreme when people take to bed rest to cope with their pain. We then add cardiovascular deconditioning, arterial constriction, blood clots and the possibility of pressure sores to the list of adverse consequences. Studies demonstrate that there is no known medical condition that is helped by prolonged bed rest.1 

When faced with the dilemma that it ‘hurts’ to move and accepting the fact that it is bad for your health and exacerbates pain to not move, I am hoping you will choose the latter. I recognize that this is no small task. So how should you proceed?

Arm yourself with knowledge; pain neuroscience education is key. Know that pain is not synonymous with tissue damage. In a normal functioning nervous system, pain is an early warning system of potential tissue damage. With CRPS both the peripheral and central nervous system function can become sensitized resulting in pain with non-painful stimuli (allodynia), exaggerated pain with a painful stimulus (hyperpathia) or pain in the absence of any stimulus, i.e. spontaneous pain. To use a smoke alarm analogy, this is the equivalent of every smoke alarm in your house going off when you blow out a single birthday candle in addition to your smoke alarms going off randomly all day and night. With the smoke alarm, eventually you would come to the conclusion that the system is malfunctioning, and if you are anything like me, you would start cleaning them off the ceiling with a broom stick. The smoke alarm is no longer providing you with useful information. The same could be said of the sensitized nervous system. Common sense tells you that touching your hand lightly should not result in a burning sensation, but it does and patterns of activation in the centers of the brain that process this information look about the same as if you were touching a hot burner on your stove. There is nothing imagined about this, it is real. The good news is that you can change this experience.

Learn ways to modulate your pain. While knowing how pain is processed is not an absolute requirement to learn pain modulation, most people just don’t take our word for it when we tell them they can make their pain better or worse. The receptors in our body that collect information about actual or potential tissue damage are called nociceptors and the process whereby information about unpleasant stimuli is transmitted to the brain for processing is called nociception. Your brain takes this information, puts it into context of your past experiences, psychosocial factors, your personal beliefs, your cultural identity, your current health and demographics and your spiritual beliefs among other factors and does a threat assessment. Your brain will produce pain in proportion to the perceived threat not necessarily in proportion to the actual threat. If your conclusion is that what you are experiencing is not very dangerous then you will experience less (or no) pain. Thoughts and expectations do matter. If you have catastrophic thoughts and expect that you will never get better your pain will be worse. Your brain will ratchet up the threat assessments unless these thoughts are addressed. A psychologist with experience in chronic pain management is most helpful in addressing these issues.

Nociception need not be present to experience pain. Emotional and cognitive stressors can both produce pain responses in areas of the brain identical to those produced by the nociceptive process. Learning techniques to manage these stressors can down regulate pain. Meditation and relaxation exercises quiet activity in areas of the brain that process pain. Conversely, you can have nociception but not experience pain. There is an abundance of functional magnetic resonance imaging studies that allows observation of brain activity in real time that support these assertions.

It’s time for Graded Motor Imagery. The ground breaking work being done by Butler and Moseley with the Neuro Orthopaedic Institute (NOI) addresses the neuroplastic changes that occur in the brain as a result of the central nervous system being bombarded by nociceptive information. Brain health is promoted through a series of three activities: laterality tasks, imagining/thinking about movement and mirror box therapy. These activities can help to reduce pain and increase motor control for better quality movement. NOI has many good online resources that can help get you started. We generally recommend five minutes of GMI 8-10 times per day spread out across your waking hours. If you are going to be working with a physical therapist, make sure the person you are working with has experience with these techniques. Pairing these with desensitization exercises can help with allodynia.

Address the building blocks of function. Once you have developed some skills to better manage your pain, you are more likely to have success progressing into the active portion of your treatment program. Our goal up to this point in addition to understanding and reducing pain has been to reduce the fear associated with movement by better understanding pain. Given that you will be able to down regulate pain in the event that it increases you will be able to look past those previous experiences of trying to increase your activity level that did not go so well. Gentle exercises to improve joint mobility, improve muscle flexibility and increase cardiovascular endurance are key. Start slow, increase slowly but don’t be deterred by discomfort that you are likely to experience in the moment. As you add more activities to your program, the guiding principal is that if you can do tomorrow what you did today, you are heading in the right direction. If you can’t do tomorrow what you did today then you did too much. Adjust your activity level accordingly. Once you have established a baseline you can start slowly increasing the duration of your cardiovascular activities. Studies demonstrate that cardio above all other forms of exercise helps to regulate health in the nervous system, decrease depression, and reduce stress in addition to promoting cardiovascular health.

In addition to neuropathic pain associated with dysfunction in the nervous system people with CRPS experience a combination of orthopedic consequences associated with the original injury or disuse. Almost universally, one of these consequences is myofascial pain associated with guarding the injured area and adjacent areas. Learning skills to self manage myofascial pain are essential to reducing pain in the periphery. Releases and stretches are essential to managing flare ups.

When you are experiencing some success with the above it is time to move on towards addressing specific deficits identified on your physical therapy evaluation. Exercises for building strength, addressing postural imbalances, improving balance, practicing good body mechanics are a good lead in to functional training.

Putting the Fun back in Functional: Ultimately, everything up to this point is pursued with individual functional goals in mind. What are the most important activities for you to regain quality of life? For some, self care and the ability to live independently is the most important thing. For others it is playing with their children or dancing with their partner. For some, it is getting back to work and regaining financial independence. Getting back into your normal daily routine involves sitting and standing tolerance, safe ambulation, the ability to transfer from standing to floor and back and may involve components of lifting, carrying, pushing and pulling, fine and gross motor skills. These should all be incorporated where appropriate to meeting your functional goals. Engaging in activities that you enjoy unlocks your body’s natural pain relieving ability and is another step towards a more healthy life.

  1. Allen, C; Glasziou, P; Del Mar, C (9 October 1999). “Bed rest: a potentially harmful treatment needing more careful evaluation.”. Lancet. 354(9186): 1229–33).