Category: RSDS General Info

Written by Karen Brinkley, MD, Associate Professor of Medicine, University of Toronto

If you have CRPS, you may already realize that existing treatments do not work as well as we would like.  The best hope for improved treatments will come from a better understanding of what is going wrong in CRPS, so that we are better able to fix it.  In this column, new developments in our understanding about CRPS, and implications for treatment are reviewed.

Developments in the understanding and treatment of other autoimmune conditions, which may be relevant to CRPS, are also highlighted, in the hope of generating research interest to explore new treatment possibilities that are so desperately needed.

Topical ambroxol for CRPS

Researchers in Germany describe some success in a small case series of 8 CRPS patients treated with 20% ambroxol cream. Ambroxol is primarily used to enhance mucus clearance in patients with viral infections, such as the common cold. It likely has multiple modes of action, but because it blocks sodium channels on nerve cells, it can also reduce pain. In the report 6 of 8 patients had reduction of pain and edema, 6 of 8 had improved motor function, 4 of 8 had improvement in skin temperature and skin reddening. This report suggests that ambroxol cream may be a useful addition to CRPS treatments, but further studies will be needed.

Low dose interleukin 2 for autoimmune disorders

Interleukin 2 (IL-2) is a cytokine naturally produced by the body. It has many different roles in regulating the immune system. While important for the growth and proliferation of many types of lymphocytes (a type of white blood cell), its role in the development of regulatory T cells (Tregs) is increasingly recognized. Tregs are partly responsible for controlling inflammation and over-exuberant immune responses, as occurs in autoimmune disorders. Recent studies with several autoimmune disorders suggest that low dose IL-2 may increase the number of Tregs, and help dampen the autoimmune process. This may be very relevant to CRPS, as there is increasing evidence that CRPS is, at least in part, an autoimmune process. While not without risks, it might be reasonable to see if this type of treatment would be helpful in CRPS patients with evidence of autoimmunity, in whom other treatments have been ineffective.

Vagus nerve stimulation for autoimmune disorders

Vagus nerve stimulation is another treatment modality showing promise in treating autoimmune conditions. The nervous system is known to influence the immune system, at least in part through the action of the 2 branches of the autonomic nervous system (which controls unconscious bodily functions): the sympathetic and parasympathetic nervous systems.  In one circuit, termed “the inflammatory reflex,” action potentials transmitted via the vagus nerve (part of the parasympathetic nervous system) inhibit the production of tumor necrosis factor (TNF), an inflammatory molecule that may be increased in certain phases of CRPS. TNF is also increased in rheumatoid arthritis (RA), an autoimmune disorder with prominent joint involvement.  It has been shown in small studies that stimulating the vagus nerve reduces TNF and improves symptoms in RA. Might vagus nerve stimulation be helpful in CRPS? Further studies may be warranted, especially now that portable vagus nerve stimulators are available, and do not require surgical implantation.

References

1. Successful treatment of complex regional pain syndrome with topical ambroxol: a case series. Maihöfner C, et al. Pain Manag. 2018.
2. Targeting IL-2: an unexpected effect in treating immunological diseases. Congxiu Ye, et al. Signal Transduction and Targeted Therapy volume 3, Article number: 2 (2018)
3. Vagus nerve stimulation inhibits cytokine production and attenuates disease severity in rheumatoid arthritis. Koopman  F, et al.
   Proc Natl Acad Sci U S A. 2016 Jul 19; 113(29): 8284–8289.
4. Scientific American: Can Zapping the Vagus Nerve Jump-Start Immunity?

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Written by Christina Price, PT for the RSDSA blog.

I am a physical therapist, working on 28 years of practice in Colorado. My first memory of seeing a patient well past the first stages of CRPS was about 24 years ago. She was a middle-aged woman who had injured her foot and ankle, presenting post operatively for physical therapy. She refused to look at her foot, and certainly was not going to touch or massage the area. She clung to her crutches as she handed over the orders for full weight bearing, mobility and strengthening, but refused to even place her foot on the floor. She had presented with a bare foot, the skin was shiny and she was severely hypersensitive to touch all the way up to the knee. Her toes were swollen and white and she could not move them more than a few millimeters with great effort and pain. This was my first inkling that we were in for a long haul together.

Since that time, there have been many such patients, in different stages of the process, but none have pulled at my heart the way the teens and pre-teens have. After the crying, the screaming, the compromising and the eventual mutual understanding of what needed to be done, the vast majority of them go on to lead normal lives. Family support (but not family presence during treatment), counseling for the patient and their family members by a family counselor familiar with this issue, and physicians who also understand the needs of these patients makes the PT’s job a little easier. There are no short cuts, and no fancy techniques or equipment to get you over the really difficult hurdles. Building mutual trust is paramount. The patient and their family members have to trust in what you are doing.

We have found that diversionary techniques work extremely well to redirect the brain and nervous system during desensitization and movement work. We have our patients count backwards by 3’s, list the states alphabetically, recite recipes, or read out loud from a book of jokes. It is important to set goals, always monitoring how long they tolerated something, or how many reps they did, and challenging them to continuously move forward. They have to beat their times or their prior number of reps, or they complete another full set of exercises to make up for it when they do not. We always set the goal with the patient, allowing room for compromise (and allowing the patient a sense of having some control) while still moving forward. Follow through at home is vital, and, without it there is little hope for moving back toward full functional return.

Being the person these patients dread seeing can be draining unless you maintain your perspective and can show yourself and your patient that it is because of their dedication to the program that they are indeed moving forward. We do not ask about pain numbers on a pain scale. Their numbers are not on the pain scale. The focus needs to be on functionality. The pain will come down once the body part is a functional part of the body again, and not before. The PT who can see past the pain and who can lead the patient through a program focused on functional return, is an integral part of the treatment process for these patients.

Written by Rochelle Odell for the RSDSA blog.

NIB, Narrative Inquiry in Bioethics published in Narrative Inquiry in Bioethics • Volume 8 • Number 3 • Winter 2018

I suffer from Complex Regional Pain Syndrome (CRPS), one of the most painful and difficult diseases to treat. Toss in fibromyalgia, multiple spinal problems and osteoarthritis for good measure and you quickly see pain was the center of my life.

2016 proved to be the year of marked change for me. In January my then CVS pharmacist informed me he would no longer be able to fill my Dilaudid prescription. He kept telling me ‘something’ was coming down the pike. It was the CDC 2016 Opioid Guidelines.

Granted, 900–4 mg tablets is a large dose but I had been on that dose for 16 stable years, along with Diazepam, Norco, Flurazepam, Robaxin and Lidocaine. All these meds were prescribed every month—no I did not have any problems. I was actually functioning, something I haven’t done since December 2016, when the rest were stopped cold turkey, including Diazepam, a drug I had been on for over 20 years. It’s a wonder I didn’t die when the Diazepam was stopped. I was terrified I might. I was 69 at the time and should have been weaned off in a safe manner.

The Dilaudid was stopped in March of 2016 because my pain management MD didn’t like the fact he had to go over my whole history every month with my Medicare advantage insurance mail order pharmacy I had to switch to. That was sheer hell. I never forgave that man. The rest were stopped in December 2016 to give my body a break, a break I was not ready to take. But my story is not unique, it’s happening to countless other chronic pain patients.

I no longer functioned, quit driving and quickly remembered what a 10 on a 1–10 pain scale really was. I was in a fog, my ears began ringing incessantly, and all four senses were affected. It feels as if a mega-watt TENS unit is on top of my head, jolting me with electricity non-stop. The contractures from the CRPS have caused my right hand to clamp down completely. I lost the use of my dominant hand. The left hand now wants to follow suit. The saddest part is I am alone, I have no help. Physicians put me on all these drugs and they stopped them with no valid reason given. I do not trust any MD anymore.

My pain journey began after a workers’ compensation knee injury and plantar fasciitis. By 1992 physical therapy no longer helped, nor did special shoes and inserts, so I underwent a 2nd right knee arthroscopy and the orthopedist was supposed to remove a painful heel spur that developed. Immediately post-op I knew something was wrong. The pain in my left foot was excruciating and felt like it was on fire. The doctor kept telling me it would get better… it never did.

I returned to California, as I had left an excellent career in aerospace to work towards my dream of becoming a nurse and had moved to Georgia to work in a hospital and return to school at age 46. My California workers’ compensation physician sent me to a specialist. He took one look at my swollen and very red foot, asked me to describe the pain and quickly diagnosed me with Reflex Sympathetic Dystrophy (RSD). He failed to tell me what it was and I only found one paragraph at the library about Causalgia, the name given this disease by the civil war physician who named it. It was changed from RSD in the mid 1990’s to CRPS.

In spite of the painful foot, I continued on my journey to become a nurse, became an ICU Nurse Tech, and again returned to school. I loved my job and had finally found my niche in life. I couldn’t wait to become a nurse, no matter how long that took. Two years later the CRPS took my job and my dream away from me. I was devastated. Not depressed—sad, yes, but more angry than anything.

I opted to wait 18 months before starting pain management. However, the pain was localized to the left foot. I had to wait because it was a pre- existing condition and I let workers’ compensation buy me out so I could choose my own physician. I should never have started treatment. Once started, my disease began a rapid spread and in short order began to encompass my whole body.

My treatment started with lumbar sympathetic blocks. I was told if my pain was gone, it confirmed my diagnosis. The doctor explained what this monster really was. I went home after the block and cried as the pain was gone for six hours. Three more were performed before moving onto something else, as the results were short lived.

He started me on a cardiac med thought to help with nerve pain. All it did was cause my blood pressure to bottom out. He then prescribed an older tricyclite, which only served to upset my heart causing cardiac dysrhythmias. Hmm, what’s next? I then had two concurrent temporary epidural catheters implanted and they worked great. I could make those two small portable IV pumps do whatever I wanted. I received Marcaine and knew when to back off the doses. Working with two CADD pumps (i.e., a Computerized Ambulatory Delivery Device) and two IV bags of medication in my fanny pack proved to be challenging.

Eventually my lower catheter became infected. I was admitted to the hospital on an emergent basis. Both catheters were turned off and I was started on IV antibiotics. I was scheduled the next morning to have both catheters removed. However, within six hours of being admitted, the pain was excruciating and I had to be moved to a private room due to screaming. He reluctantly turned the upper catheter back on and within a short time, peace was at hand. I spent ten days in the hospital and was cautioned to watch for the same symptoms.

Within five days I had back pain and a temp. Again I was admitted and the remaining catheter was removed. It broke in half when the doctor pulled it out, requiring more surgery to clean out the now infected catheter tunnel. Ten more days of IV antibiotic therapy and then I was placed on Vicoden ES and Diazepam for pain and anxiety.

I was asked to seek psychological therapy to help me deal with ever increasing and spreading pain. I had an excellent rapport with the psychiatrist but we spent little time on how this disease was affecting me. He tried me on three different SSRI’s that only served to add pounds or a variety of side effects. After a few months he cut me loose. Seeing him was having little effect, and I was starting to dread any new drug added.

Because the epidural catheters were successful, my first spinal cord stimulation (SCS), a type of neurostimulation therapy that is effective for some chronic pain patients, was implanted. It was a self- contained unit that worked very well. I ran it on high for 15 months before hearing the subtle beep that it was dying. My doctor said it shouldn’t die this soon—what was I doing, running it on high? Yes, was my reply, nonstop 24 hours a day. I wanted to achieve max pain relief.

It was removed and my second SCS was implanted. It never worked as well as my first. By then the RSD had begun. The second SCS was removed and a pain pump implanted. It also never worked and having something I could not control in my body did not thrill me. The pump ran out more than once and the withdrawal for just the few hours was not fun. It was eventually removed.

By then I had undergone Stellate Ganglion Blocks, Axillary and Intrascaline Blocks, all with short-lived results. My body was betraying me and not cooperating. I was also undergoing Bier Blocks to the left foot. Those are horrible and again the results short-lived. I even underwent Cryoanesthesia to the left foot where the offending nerve was frozen. My foot orthopedist assisted with this procedure. When he opened my left heel he discovered the physician in Georgia had cut into a branch of nerves in the left foot and severed the nerve rather than removing the heel spur. He never told me. Now we knew why the CRPS was triggered.

The cryoanesthesia worked well, until I stubbed my toe. The fact I was facing even more procedures did not thrill me. Being put under anesthesia and waking up to more pain was not worth the ‘possible good outcome’ anticipated, coupled with the fact my body was developing allergies to more and more drugs. When will this nightmare end?

At that point my pain management physicians had left, and the new doctor assigned . . . he and I were like oil and water. That was my first taste of dealing with a physician who had a differing view on opioid prescribing. I began seeing another pain management physician. It worked out well.

The third SCS was implanted and the results were excellent. I had pain relief from both shoulders to my fingers and from hips to toes. My elation was short-lived. At week three post op, redness developed around the surgical site. I was admit- ted. For ten days I laid in the hospital bed with increasing pain.

Because of my history with implants and infectious disease, I wanted everything removed if a problem was found. Necrosis had developed in the pocket made to hold the SCS and the decision to remove the whole system was made.

If anything could go wrong, it usually did. Please God why is this happening to me? I had multiple drug allergies to both antibiotics, some opioids, and other medications. Why has my body forsaken me?

I began seeing a physician who was both my primary and pain management physician. It worked out until he moved 3 years later. My Dilaudid was increased and the other medications started. He confirmed my diagnosis of fibromyalgia.

My right hand began severe contractures and I underwent two manual manipulations. I began developing staph and MRSA infections in my right hand. I had temporary brachial plexus catheters for post-op hand surgeries. One worked so well

I could make my whole right arm numb and turn the Marcaine off two hours before I had to drive or do any kind of activity that required both hands.

I also underwent local blocks to the left heel, and later trigger point injections for headaches caused by the fibromyalgia. Two of my cervical disks are dissolving and my spinal pain has gone from bad to worse. I have had excellent pain management physicians. I would only change if they left the facility—doctor shopping is not fun. It’s stressful. The doctors I have need to prove themselves to me. I pay them—not the other way around. If they don’t like my attitude, I move on. It’s better than being in a poor patient-physician relationship.

Everything that can be done to treat the CRPS has been done. All the implants had to be removed for reasons beyond my control. The only thing that helped was opioid pain medication, along with other meds. My pain was never completely gone, but it was controlled. After undergoing more than

40 procedures, a medication regimen seemed to be the best solution.

What am I supposed to do now? Finding a physician to bring me back to the level I had been on will never happen. I had no desire to go to the streets for drugs either. I can’t afford it, nor would I risk my health by getting something other than what I thought I was getting. My health was already at risk when undergoing good pain management. And with my good luck being non-existent, I would probably get caught and thrown in jail.

What are pain patients like myself supposed to do now?

Written by Rita Labarbera for the RSDSA blog.

“Each patient carries his own doctor inside him.” Norman Cousins “Anatomy of An Illness”

It’s an honor and a privilege to write this article for RSDSA, the intent of which is not to offer false hope or ways to manage this wretched condition, but to inform the world that you can fully recover from RSD/CRPS. It doesn’t matter who you are, how old you are, how your condition started, the severity of your RSD, how many years you have suffered, you or your loved one can get better! My deepest hope is that by sharing my personal story and journey, I can help others to recover as well… FULLY. I was diagnosed with RSD/CRPS and suffered for many years with all its permutations, presentations, infernal symptoms, accompanying depression, despair and hopelessness. I am also a cynical, negative and resistant person by nature. I’m living proof that if I could get better, ANYONE can!

I anticipate skepticism, maybe even anger from some who may read this, and that’s understandable. My deepest hope and dearest wish is that each person who reads my story will keep an open mind and simply read one of the books I recommend as a start. What does one have to lose by reading a book? A few dollars? An hour or two of time? What is that, in comparison to getting your life back?? This article is probably the most meaningful thing I will ever write in my life and I sincerely hope dear reader, that you will continue reading.

I’m a 50 year old mom living in NJ and have 2 sons (14 and 12). My younger son is severely autistic and the demands and challenges of his disability have been great. For many years the stress of care taking took their toll on my emotional as well as my physical health. What I didn’t realize was that the body is an extension of our daily thoughts and emotions. The mind and body are one…inseparable. In order to function and cope, I had to repress a great deal of emotions. One could say that I was in survival mode, and fight or flight for many years. One could also say I’ve been through the mill. My descent into the all-expense paid, trip through the medical mill began with what appeared to be a painful swollen big toe. My son with autism had often stomped on my feet while tantruming, so initially I dismissed it as nothing. A few weeks later my pain had skyrocketed and I made a visit to “Dr. Cheerful” the podiatrist. “Could it be gout?”, “Is it broken?” I mused. After receiving a cortisone shot, I was sent on my merry way. Or so I thought. The pain intensified and spread through my foot like Super Storm Sandy. After informing her about my worsening symptoms, I received a cryptic message from the secretary to “please do not return for your follow up appointment.”

The more I sought clarity in the medical mill, the more confused I grew. An orthopedist, Dr. “How Can I Get Rid Of You As Fast As Possible?”, bestowed upon me a cumbersome medical boot and a script for pain killers. Somehow, the idea of encasing my “engulfed in flames” foot seemed counter intuitive. Not to mention, how was I supposed to drive home? In an alarmingly short time span, the hellish pain had spread to both feet. At rheumatologist #1, Dr. “It’s Nothing!”’ prescribed Epsom salts and time. This was despite the fact that my MRI showed bone marrow edema in each toe. Hobbling in slippers with my son in tow, I went to rheumatologist #2, “Dr. Distracted”. The bizarre sensations in my feet were akin to having my soles blowtorched and my toes stabbed and crushed by a cement truck. My blood work came back negative for RA and I was referred to a neurosurgeon, “Dr. Pompous” who spoke in rapid fire about “radiculopathy”. The second neurologist Dr. “I’ll Keep You Waiting for 3 Hours (yes 3) and Hand You a Brochure That Has the Word Incurable All Over It”, gave me referrals and bid me adieu.

“Dr. Detective”, rheumatologist #3, initially displayed great enthusiasm in uncovering my mysterious condition, but like a woman dating George Clooney I was abruptly dumped as a patient. After visits to 2 more rheumatologists, a misdiagnosis of RA and a nuclear bone scan, I fell down the rabbit hole of Lyme disease. Dr. “Lyme Lady” prescribed anti malaria drugs resembling yellow paint to “eradicate the parasites”. After this bout of nonsense, I entered the word of pain management. A world of waiting rooms and pale, shaking patients waiting for refills. My RSD diagnosis was official and more incredibly costly and unpleasant rabbit holes…ketamine infusions, nerve blocks, Calmare therapy, bisphosphonate infusions, drugs with awful side effects. I was no longer living…just existing. The RSD then spread to both knees and at one point it went full body. I was bedridden and 93 lbs. My family had to enlist help for the house and kids. It was a catastrophic situation and I was at the lowest point of my life.

Then I remembered Dr. Sarno. Dr. John Sarno, the “Back Dr.”, I had heard in a radio interview. I ordered a copy of “Healing Back Pain” from Amazon for $3.99. The day I pulled the book out of my mailbox was the day my life changed. Do not be thrown off by the word “back”. Dr. Sarno refers to a myriad of chronic pain syndromes that cannot be adequately explained or cured by the medical community. I saw myself in every page of this little paperback. Dr. Sarno explained that the brain, in an effort to protect us from threatening or powerful emotions (especially rage and guilt) will create physical pain sensations as a distraction. And a powerful distraction it is!! Those pain signals become super highways in the brain. The good news is that we can override these signals by creating new pathways. By the time I finished devouring the book (in half an hour), I knew that I was going to get better and it was up to me to do so. No doctor, no miracle, no pill, no treatment, was going to save me. This was an inside job. Daunting yes, but also empowering. The key to recovery of any chronic pain syndrome such as RSD is understanding the mind body connection. You could call this knowledge therapy. Once you have read and amassed the knowledge, it becomes a matter of putting it into practice….changing chronic thought patterns. One must shift their focus from the physical to the psychological. This requires no money, but merely patience and persistence.

Stay with me here. We are conditioned in our society to look towards the medical community to fix what ails us. What is woefully neglected however, is the role of the MIND. All chronic pain stems from the brain but the brain is neuroplastic. More and more research is emerging about the science of the brain and its role in our overall wellbeing and healing. There is no “miracle” when you hear about people who have spontaneous remissions of diseases. The miracle lies in their own change of mindset. There is nothing mystical about it. It comes down to understanding the mind body connection and choosing your thoughts. After suffering in the depths of hell for over 6 years, I can say I am fully recovered. I can wear sneakers, sky high heels, I can walk as far as I want, and exercise… live a totally normal life. And you can too.

In closing, Glinda the Good Witch from “The Wizard of Oz” summed up my message best: “You’ve always had the power my dear. You just had to learn it for yourself.” Anyone who is interested in contacting me, please do! I’m more than happy to offer encouragement and assistance in any way I can. My email is [email protected]. I recommend the following books as a starting point, as well as the www.tmswiki.org, a veritable treasure trove of resources and community. I’m MiffyBunny there.

Recommended reading:

Healing Back Pain: The Mind-Body Connection by Dr. John Sarno MD

Unlearn Your Pain by Dr. Howard Schubiner MD

The Hidden Psychology of Pain by Dr. James Alexander Ph.D

Please consider making a donation to RSDSA today!

Jenny Picciotto is a writer and CRPS patient who enjoys reading and playing the piano. She was a yoga instructor and massage therapist before CRPS changed her trajectory. She currently lives in Hawaii, where she facilitates the Oahu CRPS Support Group. © Jennifer Picciotto 11-30-18. First published in National Pain Report.

The holidays are a particularly stressful time for people who live with chronic pain. We are reminded more frequently of things we can no longer freely enjoy; things like going to parties, hosting a gathering, or enjoying the bustle of a crowd at a shopping mall. Managing chronic pain means living with restrictions, and the excesses – from food to fun – that accompany the holidays can feel overwhelming. When we can’t participate in festivities because of high pain levels, or when joining in results in a costly flare, we might sink into depression, find grief we thought we had worked through suddenly tender again, or risk isolating ourselves in an attempt to avoid facing how much our condition has affected our lives and relationships.

It is true that living with chronic pain means we have to ration everything we do. We engage in a guessing game as we try to estimate how much pain we risk by any individual action. How do I feel now, and how much time will I need before I am able to do something else? The loss of spontaneity, of being free to choose what we want to do, is one of the harshest realities we face. Forced to decline social events, we fall out of touch with friends and family, and our social circle shrinks. We are confronted by people who don’t, and in many cases are unable, to understand what we are going through, how we feel, how something they can’t even see can take such a toll on our day to day lives. Especially during holidays, with social and family gatherings and the feel-good atmosphere, this interpersonal disconnect can strain our ability to cope.

I am a firm believer in recognizing reality, of standing squarely in what is, and facing forward into whatever challenge may exist. So when the holidays come around, I acknowledge what I can, and what I can’t do. I lower my expectations. I recognize the fuzzy edges of loss, of longing, of wishing things were somehow different. I also take a good look around for what I continue to love about my life; the people who are there for me, the things I can still enjoy. I am nourished by friends, by the interests I can still pursue, by a simple moment of silence, by laughter, by reading a story and recognizing my own experience reflected in someone else’s journey.

It has taken some time, but I have learned to accept others for where they are in the moment too, what they can and can’t understand. I don’t need everyone to get me, and I recognize that many of the people I know, despite their happy holiday faces, are suffering immense invisible pain of their own. The Buddhist tradition, which teaches that suffering is a natural part of life, reminds me that while my suffering may be unique, it is not unusual.  Rather, it is a link to all of humanity, to the tragic reality of how all of us suffer in the course of living. This knowledge allows me to be tender towards myself, and gentle toward others. When I feel lonely in my suffering, I am reminded of the invisible suffering of others.

During this holiday season, I hope that you will fearlessly face forward, recognizing all that you have survived, and the shocking resilience of the human spirit. I hope that you will have moments when your heart is full, saturated with the simple, unspeakable joy of being. I wish you patience and wisdom, and acceptance. I wish you the strength to be a shining chalice, a crucible brimming with the full range of emotions and experience. I wish you grace that you may weave a beautiful and intricate cloth from the simple strands of every moment, no matter how large or how small, how achingly joyous or how bitterly excruciating. Each moment is a filament in the fiber of our being, a link from the past to the future, and from who we once were to who we are becoming. I believe that we are capable of enduring our challenges, that we are changed by our experience, and that the future represents an opportunity for us to grow in friendship and compassion for one another, despite our physical limitations. During this holiday season, I wish you hope.