Self Mindfulness
The Importance of Mindfulness in Dealing with CRPS/RSD: Liz’s Journey
After fracturing my small toe in a simple accident, I found myself facing a puzzling diagnosis of Reflex Sympathetic Dystrophy (RSD) eight months later. The excruciating pain and the inability to walk had taken a toll on me, but at least I had an explanation. Yet, the podiatrist’s warning about the lasting, debilitating pain left me uneasy. As I researched RSD, fear and anxiety overwhelmed me, and I noticed a direct link between my emotional state and the severity of swelling in my foot.
Fortunately, I found a pain specialist who effectively treated my RSD. She confirmed my observation that emotions can influence neuro-inflammation, leading to increased pain. While emotions didn’t cause my condition, she believed RSD might be connected to an autoimmune process in my body due to my existing lupus.
As part of my treatment plan, I began seeing a pain psychologist who enlightened me about the connection between stress, pain, and inflammation. Tension from stress can constrict blood flow, intensifying pain, while relaxation allows muscles to unwind, reducing pain. However, controlling my emotional reactions to pain was challenging.
To alleviate my stress and anxiety, the pain psychologist introduced me to mindfulness training and biofeedback. I started with deep breathing exercises, inhaling slowly through my nose and exhaling through my mouth, which significantly calmed and centered me. Even on the most painful days, I used breathing as a distraction from the pain. Biofeedback showed me how my body responded physiologically to meditation, with increased circulation and relaxation.
Positive self-talk was another crucial mindfulness tool I learned. Negative self-talk intensified suffering, while positive self-talk helped ease discomfort and foster a more understanding mindset toward my illness. Mindfulness training enabled me to be conscious of my self-talk and encouraged me to use more positive language to cope with pain.
Though CRPS/RSD remains uncontrollable, I realized that I have power over how I respond to pain. Mindfulness and meditation became essential components of my treatment plan. While my RSD has improved, flare-ups are still part of my life. However, I face them with confidence, knowing I possess mindfulness resources and tools to cope effectively with pain and stress. Pain doesn’t have to lead to suffering when mindfulness helps me navigate its challenges.
Natural Therapies
Kratom
Kratom: A Natural Solution for Chronic Pain
In the midst of the “Opioid Crisis,” chronic pain sufferers grappling with limited access to prescribed medications are turning to natural remedies to combat the pains of Complex Regional Pain Syndrome (CRPS). CRPS survivors seek relief from pain to regain normalcy in their lives, not seeking a high or euphoria.
Kratom, scientifically known as Mitragyna Speciosa, has been a cherished herbal supplement in Southeast Asia for centuries. This bitter powder, derived from the leaves of an evergreen tree in the coffee family, has gained popularity as a potential treatment for CRPS-related pain. Kratom is available in various forms, such as powder, Kratom bars, teas, or veggie capsules.
Kratom’s enthusiasts report numerous benefits, including pain relief, mood enhancement, increased focus, anxiety reduction, and an uplifting effect. It is believed to work through mitragynine, an opioid agonist that binds to opioid receptors in the brain, leading to mood improvement and euphoria, similar to opiates.
A survey conducted by Pain News Network and the American Kratom Association revealed that Kratom was deemed “very effective” for treating pain, depression, anxiety, insomnia, opioid addiction, and alcoholism. Its industry has thrived, and an estimated 3 to 5 million people in the US use Kratom regularly.
Different Kratom strains have varying effects, from euphoric and stimulating to sedating and pain-relieving. However, Kratom is not without side effects, such as dehydration, decreased appetite, nausea, insomnia, and headaches. Careful dosing and proper hydration are essential to avoid adverse reactions.
The legality of Kratom remains uncertain, with state legislation varying across the US. The DEA has expressed concern about Kratom’s alkaloid content, leading to potential physical dependence and addiction. Despite passionate debates between supporters and opponents, Kratom’s fate is yet to be decided.
Caution is advised when using Kratom, especially when combining it with other drugs. The lack of extensive studies and conflicting reports add to the ambiguity surrounding Kratom’s safety and interactions.
For those considering Kratom as a pain relief option, understanding its potential risks and consulting a healthcare professional are crucial steps. Awareness of Kratom’s legal status in specific states is also essential.
As the debate continues, chronic pain sufferers seek alternative solutions, hoping for safe and effective remedies that enhance their quality of life without causing harm.
Marijuana
Cannabis Indica, Sativa, and Hybrids: A Potential Relief for CRPS Sufferers
Complex Regional Pain Syndrome (CRPS) poses significant challenges for individuals experiencing chronic pain, such as CRPS survivors and those with conditions like chronic migraines, neuropathies, spasticity, joint pain, HIV, and cancer. Seeking relief from harsh side effects and invasive treatments, many are exploring the potential benefits of medical marijuana to alleviate pain, combat nausea, and address weight loss issues.
Medical marijuana, derived from the cannabis plant, has gained popularity in various states, either as “recreational marijuana” or “medical marijuana” under prescription. Chronic pain sufferers commonly use Indica and Sativa strains due to their nausea-alleviating properties. The plant contains two crucial compounds, cannabidiol (CBD) and tetrahydrocannabinol (THC), which play significant roles in pain relief and other symptom management.
CBD and THC interact with receptors in the brain, known as CB1 and CB2 receptors, respectively. The activation of these receptors leads to pain reduction and other therapeutic effects. THC is psychoactive, resulting in the “high” associated with marijuana use, while CBD has no psychoactive effects.
Indica strains are favored for their calming and soothing properties, providing physical relaxation. Popular Indica strains include Granddaddy Purple, Bubba Kush, Northern Lights, Blue Cheese, and Purple Kush.
On the other hand, Sativa strains offer an energizing and euphoric experience, beneficial for depression and fatigue. Some notable Sativa strains are Sour Diesel, Green Crack, Jack Herer, Durban Poison, and Lemon Haze.
Hybrid strains, often a combination of Sativa and Indica, offer a balanced effect with varying concentrations of both. Experimenting with different strains helps individuals find the most suitable option based on their lifestyle and symptoms.
Medical marijuana’s potential for CRPS relief makes it a natural choice for many individuals. However, it is essential to navigate the legality and regulations surrounding its use, seeking advice from healthcare professionals when considering its integration into treatment plans.
As research and legislation on medical marijuana continue to evolve, individuals affected by CRPS seek alternative options to improve their quality of life and manage pain effectively.
Meditation, Exercise & Physical Therapy
Meditation
i- A Book By Our Cofounder & CEO
Healing The Body Within by Shirene Garcia.
https://warriorsofcrps.org/crpsstore/healingthebodywithin/
ii- Basic Steps to Mindful Mediation
Mindfulness Meditation: Embracing Peace in the Midst of Pain
Chronic pain can be frustrating and disruptive, but mindfulness meditation offers a potential aid in pain management. By attentively listening to your body and focusing on your breath, mindfulness meditation holds promise as a complementary approach to alleviate pain symptoms. Although more research is needed to understand its impact fully, initial studies suggest that mindfulness meditation may lead to improved pain relief compared to conventional treatments.
Beyond pain management, mindfulness meditation also serves as a powerful tool to reduce anxiety and stress. Given that stress contributes to muscle tension and increased cortisol levels, which can worsen chronic pain, the stress-reducing benefits of mindfulness are particularly beneficial for those experiencing persistent pain.
If you’re interested in starting mindfulness meditation, here are some beginner tips to achieve a state of calm and control
Remember, mindfulness meditation may not be a cure-all, but it offers a gentle and accessible avenue for those with chronic pain to explore. As you embark on this journey, allow mindfulness to embrace you with tranquility amid life’s challenges.
Exercise & PT
i- Graded Motor Imagery (GMI)
Graded Motor Imagery (GMI) Therapy: A Promising Approach for CRPS Treatment
Complex Regional Pain Syndrome (CRPS) can leave patients feeling disconnected from the affected limb, leading to severe pain upon any movement or touch. This aversion to using the limb can eventually cause the brain to “forget” the limb’s existence, similar to Body Integrity Identity Disorder. Graded Motor Imagery (GMI) Therapy, as a CRPS treatment, focuses on rewiring the brain and restoring limb function.
The concept of GMI Therapy revolves around the brain’s plasticity, its ability to adapt and form new pathways. Many CRPS patients, especially those with knee, ankle, or foot CRPS, avoid using the affected limb altogether. GMI Therapy seeks to reverse this process by re-establishing the brain’s connection with the limb over time. By engaging in specific exercises, the patient gradually retrains the brain to acknowledge the limb’s presence and use it with reduced pain.
Understanding CRPS:
Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is a debilitating condition caused by an injury that can trigger the disease at any time. CRPS manifests in various symptoms, including burning pain, temperature changes in the skin, heightened skin sensitivity, and swelling in the affected limb. While Graded Motor Imagery is one of the available treatments for CRPS, there is currently no known cure for the condition.
What is Graded Motor Imagery (GMI) Treatment?
Graded Motor Imagery (GMI) Therapy aims to retrain limb distinction and restore function while alleviating pain in CRPS patients. The treatment involves using images of right and left limbs in different positions.
The three stages of GMI for CRPS treatment are as follows:
- Stage One: The patient identifies whether an image represents a right or left limb.
- Stage Two: The patient imagines moving the same-sided limb into the position seen in the picture without actual physical movement. This activates the premotor cortex areas of the brain.
- Stage Three: The patient performs the actual physical movement of the same-sided limb into the position shown in the picture.
The critical goal of GMI Therapy is to complete all stages pain-free with 100% accuracy before progressing to the next stage.
Using GMI for CRPS Treatment:
GMI Therapy can be performed with the help of a physical therapist or independently at home. For home practice, follow these simple steps:
- Capture 20 photos of someone’s right foot from different angles without socks and shoes.
- Capture 20 photos of someone’s left foot from different angles without socks and shoes.
- Print the photos and shuffle them randomly.
- Daily, run through the cards with the CRPS survivor.
- Gradually, as accuracy reaches 100% in under one minute, progress to Phase 2.
While GMI Therapy offers hope for CRPS patients, it’s essential to acknowledge that this condition has no cure, and approved therapies remain limited. However, by exploring approaches like GMI, we take steps towards better pain management and improving the quality of life for those facing the challenges of CRPS.
ii- Hypnosis
Hypnosis Therapy for CRPS: A Promising Approach to Pain Relief
Complex Regional Pain Syndrome (CRPS) affects the nervous system and brings about excruciating pain and discomfort. While there is no cure for CRPS, several treatments and medications are available to manage its symptoms. However, not everyone is comfortable relying on prescription medications with potential side effects. Hypnotherapy emerges as an alternative treatment option for CRPS, with the potential to provide relief and even induce remission in some cases.
Understanding Hypnosis for CRPS Treatment:
Hypnosis has a long history, from ancient mystical practices to more modern scientific applications. In recent times, it has been explored in the field of neurology as a method to help cure illnesses, including CRPS.
How Does Hypnosis Work for CRPS?
The use of hypnosis for CRPS gained traction in the 1990s and has since been a subject of active research and studies. One study in Toulouse, France, focused on 20 Type 1 CRPS patients with hand/wrist CRPS, and showed significant improvements after 5.4 hypnosis sessions. The patients experienced reduced pain, inflammation, stiffness, and improved mobility in their affected fingers and wrists. Overall, an 80 percent improvement was observed.
Hypnotherapists believe that the mental imagery generated during hypnosis can influence the autonomic nervous system, leading to relief from pain, stiffness, temperature fluctuations, numbness, and tingling associated with CRPS. The approach often involves a combination of physical therapy and localized hypnosis targeting the affected area.
Expert in the Field:
David Flemming, MD, stands as a leading authority on hypnosis for CRPS treatment. He began his work in the 1990s and is credited with bringing credibility to hypnosis as a viable approach for CRPS relief. Dr. Flemming emphasizes that success largely depends on the patient’s belief in the treatment’s effectiveness. Due to the stigma surrounding hypnosis, treatment providers are selective in choosing patients who show potential for success.
Success Rate and Positive Results:
Dr. Flemming’s treatment center in Chicago, which incorporated hypnosis, standard medicine, and physical therapy for CRPS, demonstrated promising results. Among approximately 1,000 patients, 60% achieved long-term remission, characterized by symptom reduction, cessation of medications, and functional restoration.
Hypnosis as a Safe Alternative:
Hypnosis is considered a relatively safe alternative to more invasive treatments. However, its success hinges on the patient’s willingness to accept and believe in the treatment’s efficacy. Ongoing studies will continue to debate the effectiveness of hypnosis, as it has been a subject of interest for both its potential and the skepticism associated with it.
In conclusion, hypnosis therapy shows promise as a non-invasive option for managing CRPS symptoms and inducing remission in some cases. Patients considering this treatment should collaborate with experienced practitioners and approach hypnosis with an open mind to maximize its benefits.
iii- Desensitization, Touch & Mirror Box
Changing Your Perception of Pain through Desensitization Therapy
Do you suffer from skin sensitivity associated with chronic pain or Complex Regional Pain Syndrome (CRPS)? Does the gentlest touch on your skin feel excruciatingly painful, leaving you desperate for relief? If you experience pain from non-painful stimuli, like cool water, feeling like dry ice on your skin, you might be dealing with Allodynia. Allodynia refers to the perception of pain from non-painful stimuli and is a common symptom experienced by those diagnosed with CRPS.
While there is no cure for Allodynia, Desensitization Therapy is one treatment option that can potentially change your perception of pain. This therapy targets the hypersensitivity caused by CRPS, aiming to rewire the brain and reduce pain responses.
What is CRPS?
Complex Regional Pain Syndrome (CRPS) often arises after an injury, causing disproportionate burning pain, skin temperature changes, and increased sensitivity in the affected limb. Although there is no cure for CRPS, various treatments, including Desensitization Therapy, are available to manage the condition.
Desensitization for Neuropathic Pain
CRPS patients frequently experiences both Allodynia and Hyperalgesia, which is an increased sensitivity to pain. Everyday activities that wouldn’t bother a healthy person can become painful and debilitating for someone with CRPS. While some doctors may prescribe medications like gabapentin to manage skin sensitivity, others recommend physical therapy, specifically Graded Desensitization.
Graded Desensitization involves stimulating nerves just enough to be uncomfortable without causing pain. This helps reset the painful nerves in some pain conditions. The therapy is carried out in stages, starting with massages and stretches and gradually advancing to more intense stimulation techniques like vibration and contrast baths.
Mirror Box Desensitization Therapy
For individuals who cannot tolerate even slight pressure due to extreme hypersensitivity, Mirror Box Therapy may be a viable alternative. In this approach, the affected limb is hidden behind a mirror while the person focuses on the mirror, tricking the brain into perceiving less pain in the affected limb.
How to Do Desensitization at Home
Desensitization Therapy can be done at home, either directly on the affected limb or in conjunction with Mirror Box Therapy. With the help of a trusted helper and a stopwatch, individuals can use different textured items to stimulate the affected limb for short periods, gradually increasing the time as they build tolerance. The person undergoing therapy repeats a mantra like “This does not hurt. There is no pain” to retrain the brain and desensitize the affected area.
Touch Desensitization Therapy
Touch Therapy is another helpful method to complement Desensitization Therapy. In this approach, a therapist or helper touches the affected limb and then touches the unaffected limb immediately after. This helps the brain remember the sensation without pain, reducing pain responses over time.
Completing Desensitization Therapy Alone
Individuals can also practice Desensitization Therapy alone, lightly brushing the affected limb while affirming that it doesn’t hurt. Then, they repeat the same action on the unaffected limb, reminding the brain of the correct sensation. This can be done anywhere and is especially beneficial during moments of waiting or relaxation.
Desensitization Therapy offers hope to individuals with CRPS by potentially changing their perception of pain. With dedication and support, this therapy can help regain control and improve daily living despite the challenges posed by Complex Regional Pain Syndrome.
Positive Support Systems:
Families & Friends of CRPS Patients
i- A Guide For Friends & Family:
Living With Complex Regional Pain Syndrome: A Guide For Friends and Family
Complex Regional Pain Syndrome (CRPS) is a challenging and chronic condition that causes significant pain in one or more limbs, often accompanied by symptoms like raised temperature, excessive sweating, goosebumps, and swollen limbs. Those affected may also be extremely sensitive, overreacting to even the slightest touch or bump.
For friends and family of someone with CRPS, it can be just as challenging. It’s difficult to see a loved one in pain, and sometimes, it’s hard to know how to help or understand their experience.
Everlasting Understanding
Living with CRPS requires constant understanding from friends and family. The condition’s unpredictability may cause the patient to be able to do something one week but be unable to do it the next due to worsened pain. It’s important to know that this isn’t laziness or unwillingness; it’s a result of the pain’s fluctuating nature.
Patients may also feel short-tempered or depressed due to their pain, and it’s crucial to remember that their mood changes are not personal rejections but rather a consequence of their condition.
Accepting Their Condition
Being supportive means accepting the limitations imposed by CRPS. Patients may have to cancel plans last minute due to pain, and insisting on going out may worsen their condition. Instead, understanding and accepting their limitations can ease frustrations for both parties.
Stay Realistic
When new treatment options are considered, it’s natural for friends and family to get hopeful, but CRPS is notoriously difficult to treat. While trying new treatments, it’s essential to stay realistic and not assume they will be 100% successful. Instead, focus on supporting the patient throughout their journey, knowing that disappointments may occur.
Communication is Key
For those investing in someone with CRPS, and it’s vital to talk openly with friends and family about their emotions and fears. Sharing these feelings can better equip them to provide support even when it becomes challenging.
Living with CRPS is indeed daunting, but with enduring understanding, acceptance, and realistic expectations from friends and family, the patient can find comfort and strength in their support network.
Acceptance: It’s Not Just The Patient!
What you are about to read regarding acceptance does not just hold true for the patient but also for the family and friends of the patient. Really think about this. The patient is not the only person who mourns the life before CRPS.
Learning Acceptance for CRPS & Chronic Pain
Living with a chronic condition like Complex Regional Pain Syndrome (CRPS) or chronic pain can lead to feelings of anger, trauma, loss, and frustration, in addition to the physical pain itself. These emotions are entirely normal and often experienced by those on a chronic pain journey. Accepting the changes in one’s life and learning to cope with the condition is essential for moving forward.
When facing CRPS or chronic pain, individuals may take one of two paths: choosing to cope with the condition or embracing acceptance. This article focuses on learning acceptance for CRPS and chronic pain.
Learning acceptance can be a long and challenging process, taking patients months or even years to come to terms with their chronic condition fully. This article explores the various stages individuals go through as they work toward acceptance.
Acceptance means acknowledging that one’s life has changed permanently due to the chronic condition. It is perhaps one of the most difficult aspects to embrace upon receiving a diagnosis of Complex Regional Pain Syndrome or another chronic illness.
Accepting the condition doesn’t imply taking the high levels of pain one may experience. It means acknowledging the reality of living with a chronic disease that currently has no cure. It is essential to maintain hope for future advancements in treatment.
The process of acceptance resembles the stages of grief experienced when facing a significant loss. Individuals may go through denial, anger, bargaining, and depression before reaching acceptance.
Denial is often the initial response to a chronic pain diagnosis. Patients may refuse to accept that their lives have been affected, denying the existence of the condition or avoiding seeking appropriate treatment.
Anger can follow denial, as individuals may feel frustrated with themselves, their loved ones, or medical professionals for not fully understanding the situation or offering a cure.
Bargaining involves attempting to find solutions or make deals with oneself or a higher power to alleviate the pain and return to the old way of life.
Depression is a standard and extended stage in the acceptance process. It is natural to grieve for the loss of the past life and the things one used to enjoy. It is crucial to recognize that bad days are average, and reaching out for support from others who understand the experience can be beneficial.
Finally, acceptance means acknowledging that the condition is a part of one’s life and embracing a new way of living. It doesn’t imply giving up on seeking treatments or a cure but rather understanding that the condition is a permanent aspect of life.
The journey toward acceptance is unique for each individual, and there is no fixed timeframe or specific order for the stages. Seeking medical advice or counseling if one finds themselves dwelling on a specific stage can be helpful in progressing toward acceptance.
In conclusion, acceptance of CRPS and chronic pain is a transformative process that enables individuals to regain a sense of control and continue living despite the challenges posed by the condition. It may not happen overnight, but with patience, understanding, and support, one can move forward toward a more fulfilling life with chronic pain.
Peer Support
First, we recommend you join our Facebook Group. https://fb.com/groups/warriorsofcrps/
Be sure to answer the questions to join.
Second, we invite you to visit our Resources Page. https://warriorsofcrps.org/resources/
