I want to acknowledge one of the groups of people affected by CRPS the most: parents of children with CRPS. It doesn’t matter if your baby is two years old or fifty three. As a mother myself, I think the only pain worse than CRPS is watching your child suffer from CRPS.
The stories you’ve shared with me—of your son missing out on baseball, your daughter unable to attend her prom, your child crawling instead of walking—haunt me. I hear your heartbreak when you talk about the life you imagined for them, now clouded with constant pain and uncertainty. I know you lie awake at night, wondering about their future, and it breaks my heart alongside yours. Only other parents of children with CRPS can truly understand the unique and isolating pain you endure.
But in the face of all of this, I see your strength, your resilience. You are their rock, their steady anchor when everything else feels unstable. While I can’t offer you words that will take away their pain, I can tell you this: your love and unwavering support are what keeps them going. I’ve seen it time and time again. You give them hope when they have none, and you fight for them every single day. I admire you deeply. Please know that you are not alone, and I am here with you in this battle, every step of the way.
CRPS is associated with imbalance and malfunction of the autonomic nervous system resulting in disability, impairment, chronic pain, and functional loss. The International Association for the Study of Pain has proposed dividing CRPS into two types.
Formerly known as Sudeck’s atrophy or reflex sympathetic dystrophy (RSD) does not exhibit demonstrable nerve lesions. The vast majority of people suffering from CRPS have this type.
Formerly known as causalgia, has obvious nerve damage present. As a rule, type II is considered the more painful of the two types with an unenviable 47/50 score on the McGill pain scale.
While CRPS was considered in the past to have three stages, it is now believed that patients with CRPS do not necessarily progress through these stages, or progress sequentially.
Characterized by intense, burning pain at the site of injury. Muscle spasms, joint stiffness, swelling, restricted mobility, vasospasms, rapid nail, and hair growth, decrease in temperature and decreased range of motion have all been reported. This has also been called “wet CRPS” as some patients may experience increased sweating. For a few lucky patients, this stage may last for a few weeks and then resolve on its own. For the unlucky majority, it progresses.
Characterized by even more intense pain, described by some as similar to the sensation of burning alive or being burned with a blowtorch. Hair growth is inhibited; swelling spreads; osteoporosis becomes severe; nails may crack, pit, grooved, or have spots on them; joints tend to thicken, and the muscles will atrophy or shrink, causing the affected limb to appear thinner than the other.
Characterized by permanent changes in the skin and bones, while the pain becomes even more intense and now may involve the entire limb. Flexor tendon contractions may be present causing the limb or appendage to contract (much like a claw). The symptoms may spread to any other body part, for example, the optic nerves or the digestive system.
The Vagus Nerve works as a two-way highway, passing electrochemical signals between the organs and the brain. In chronic inflammatory disease, low Vagal tone (or function) causes inflammation in the body. And, high Vagal tone (or function) causes the reversal of inflammation.
Good communication between the immune system and the brain is therefore vital for controlling inflammation. Of course, the problem in the body of CRPS patients is that the Vagus Nerve is doing anything but communicating with the body. It has become more like a traffic-clogged freeway, where few signals are making it through in either direction.
At The Spero Clinic you will find a community of people going through the same pain. We’re here to support you and encourage healing.
When a patient completes their treatment they ring the bell to let the world know they’ve met their goal.
Your life is still worth living.
If you look at The Spero Clinic’s gallery below, you will see many images of people “ringing the bell”. This is a tradition where my patients and staff gather when a patient graduates to their satisfaction. In most cases, that means that my patients are leaving my clinic pain-free.
If interested, fill out the form on the page linked below to access details, book a consultation with our patient enrollment team who can answer your questions about the program and help you understand if it is the right fit for you.
While CRPS was considered in the past to have three stages, it is now believed that patients with CRPS do not necessarily progress through these stages, or progress sequentially.
Stage 1 is characterized by intense, burning pain at the site of injury. Muscle spasms, joint stiffness, swelling, restricted mobility, vasospasms, rapid nail and hair growth, decrease in temperature, and decreased range of motion have all been reported. This has also been called "wet CRPS" as some patients may experience increased sweating. For a few lucky patients, this stage may last for a few weeks and then resolve on its own. For the unlucky majority, it progresses.
Stage 2 is characterized by even more intense pain, described by some as similar to the sensation of burning alive or being burned with a blowtorch. Hair growth is inhibited; swelling spreads; osteoporosis becomes severe; nails may crack, pit, grooved or have spots on them; joints tend to thicken, and the muscles will atrophy or shrink, causing the affected limb to appear thinner than the other.
Stage 3 is characterized by permanent changes in the skin and bones, while the pain becomes even more intense and now may involve the entire limb. Flexor tendon contractions may be present causing the limb or appendage to contract (much like a claw). The symptoms may spread to any other body part, for example the optic nerves or the digestive system.
While stress (physical, emotional or chemical) causes all disease, it is our belief that CRPS is not the result of one single event or stress, but more like a complicated puzzle, made up of different parts. Stress only affects you adversely physically if you cannot adapt to it. People who suffer from CRPS became overwhelmed to the point that their bodies could not adjust or respond to stress, and CRPS was the unlucky result. Our patients, for whatever reason, (most of the time it is chronic viral infections or childhood trauma) had an imbalanced nervous system prior to developing CRPS. The triggering event is not the cause of the CRPS – it’s just the "straw that broke the camel's back" allowing symptoms to appear.
CRPS is associated with imbalance and malfunction of the autonomic nervous system resulting in disability, impairment, chronic pain, and functional loss. The International Association for the Study of Pain has proposed dividing CRPS into two types.
Type I, formerly known as Sudeck’s atrophy or reflex sympathetic dystrophy (RSD) does not exhibit demonstrable nerve lesions. The vast majority of people suffering from CRPS have this type.
Type II, formerly known as causalgia, has obvious nerve damage present. As a rule, type II is considered the more painful of the two types with an unenviable 47/50 score on the McGill pain scale.
Yes. The most common example of this that we see is CRPS spreading into the GI tract.
This is an extremely subjective and sensitive topic. When the word "cure" is used, that brings to mind visions of a miracle pill, injection, surgery, or perhaps a promising double-blind study excitedly announced by the media. Please believe me when I tell you that it probably won’t happen that way. The failure in finding such a "cure" lies in the theory of what CRPS is or what it is caused by. It is a complex problem, not a puzzle with a single solution. It is not a condition that can be healed by a miracle chemical; it is a body where a whole bunch of things went wrong.
CRPS must be approached by a method where every system involved is checked and rebuilt, if necessary, in a systematic way. We have known hundreds of patients and acquaintances who consider themselves healed from the neurologic symptoms of CRPS. If even one patient can do it, why can't you?
Many patients who suffer from CRPS are able to go into remission from CRPS. Our definition of remission is not having any pain, and being able to resume normal daily activities. Some of our past patients lead very active lives, enjoying activities such as skiing (water and snow), cheerleading, competitive volleyball and weight lifting.
The debilitating pain caused by CRPS is generally described by patients as aching, burning, bone crushing pain in the affected areas of the body. The pain is all consuming, not merely nagging. Things that should not cause pain under normal circumstances (for example, the light brush of fabric or wind) may cause a person who suffers from CRPS intense pain.
Fibromyalgia is a condition that causes the patient to experience chronic pain affecting the entire body that may "jump" from area to area, along with severe, chronic fatigue. Patients who suffer from fibromyalgia often will report that they suffered from some type of old cervical or tailbone injury, such as whiplash or falls. Like CRPS, fibromyalgia is neurologic pain. There is actually quite a bit of overlap between these two conditions, although the pain experienced by CRPS patients is much more intense in nature than that associated with fibromyalgia. CRPS usually confines to one area, unless it spreads. It is possible, and in fact not uncommon, to suffer from both conditions at the same time.
Yes. RSD, or reflex sympathetic dystrophy syndrome, is the previous medical terminology for CRPS. Some medical professionals still refer to CRPS as RSD.
There are several reasons that chronic pain sufferers, including those with debilitating CRPS, hurt more at night. One reason is that lying in one place causes the body's joints to stiffen, increasing joint and muscle pain. The weight of your body may put pressure on your nerves in ways that it doesn’t when you are upright.
Additionally, as your body prepares itself for sleep, your hormone levels, metabolism, and many other biochemical processes adjust. Sometimes, this may result in an increase in your pain. Cortisol, which has anti-inflammatory effects, drops through the first half of your sleep cycle to assist you in sleeping, potentially increasing pain.
Another reason is that our body temperature fluctuates throughout the day and night. Typically, it goes down when we are sleeping. The hypothesis is that damaged nerves might interpret the temperature change as stress, resulting in pain.
Patients may find themselves more focused on the pain at night, as there are fewer natural distractions at night than there are during the day.
You may even find your bedsheets to be contributing to your pain. Almost as if the bed sheets themselves are causing you intense pain.
Overall, it has been shown that chronic pain leads to an average decrease of life expectancy of ten years. Although no formal statistics exist tracking the life expectancy of those suffering from chronic pain, there are three main arguments that have been used in litigation involving CRPS.
CRPS may lead to a sedentary lifestyle, resulting in an increased Body Mass Index. Obesity is well known to lead to a shortened lifespan.
There is no statistic associated with suicide rates in the CRPS patient population, but it is well known for being one of the "suicide diseases." This affects the overall life expectancy for this patient population. In a few severe cases, the systemic systems associated with it may lead to death. For example, CRPS may cause cardiac dysfunction, autoimmune conditions, and GI dysfunction, ultimately incompatible with life.
CRPS is not a terminal illness. However, the consequences if left untreated can severely damage a patient's mental health and prognosis. CRPS has been referred to as a suicide disease. The symptoms caused by this condition can lead to depression, suicidal ideation, and other conditions that lead to death. This is one critical reason that patients must seek medical care as soon as possible for treatment. In addition, in a few severe cases, the systemic systems associated with it may lead to death. For example, CRPS may cause cardiac dysfunction, autoimmune conditions, and GI dysfunction, ultimately incompatible with life.
Spero Clinic's Neurologic Rehabilitation program has been shown to significantly improve patients' lives and help them go into remission. We believe that to truly heal, you must get to the root cause instead of merely treating the symptoms. Some patients make great strides by decreasing inflammation through diet and lifestyle changes, as well as using programs teaching them how to better manage any stress, as stress is the enemy of pain.
Traditionally, the allopathic community has been treating CRPS pain by prescribing pain medication such as opioids or inserting durable medical devices such as spinal cord stimulators and pain pumps. However, while this approach may sometimes work, the side effects are frequent and may be devastating to the patient, even life-threatening. It is also not a successful long-term approach. We believe that true pain relief comes with healing by rehabilitating the central nervous system so that the body may heal from within. This may be obtained through focused neurologic rehabilitation programs such as ours. We always say that medical pain intervention has a ceiling, pain does not.
Some patients make great strides by decreasing inflammation through diet and lifestyle changes, as well as using programs teaching them how to better manage any stress, as stress is the enemy of pain. We also recommend that the patient keeps moving as much as their body will allow. In chronic pain, every inch relinquished to a sedentary lifestyle is usually an inch lost.
Unfortunately, CRPS does not go away, but instead patients experience remission. Today, there are treatments available to help patients decrease pain, regain their mobility, and lead better lives. Dr. Katinka’s Spero Clinic offers a treatment plan that has shown to significantly improve the lives of the patients suffering from CRPS including:
Contact Dr. Katinka and The Spero Clinic today to learn more about CRPS and to get help.
To learn more, check out CRPS Diet: Tips for What to Eat & What Foods to Avoid.
To learn more, check out The Most Painful Disorder Known to Humans: Meet the Suicide Disease.
To learn more, check out The Most Painful Disorder Known to Humans: Meet the Suicide Disease.
To understand how CRPS affects the heart, it's important to understand the role of the vagus nerve. The Vagus Nerve is one of twelve pairs of Cranial Nerves that run directly from the brain to the body, instead of from the spinal cord. It is the tenth cranial nerve and the main Parasympathetic Cranial Nerve.
Sometimes called the “wandering nerve”, the Vagus Nerve has multiple branches that diverge from two thick stems rooted in the cerebellum and brainstem. These wander to the lowest viscera of your abdomen, also connecting to your heart and most major organs, such as the lungs. The Vagus nerve supplies motor parasympathetic fibers to ALL the organs except the adrenal glands, from the neck down to the transverse colon.
It is responsible for many different tasks including, but not limited to: heart rate, digestion, sweating, speech, coughing, fainting, vomiting, and sleep
People who suffer from CRPS also suffer from sympathetic dominance, causing the parasympathetic nervous system to be suppressed and to shut down, thus, people who suffer from CRPS also suffer, by definition, from an underactive Vagus nerve.
A great indicator of Vagus Nerve function is Heart Rate Variability (HRV) and resting heart rate (when you aren’t engaged in physical activity).
In a normal heart, the resting heart rate as well as Heart Rate Variability (HRV) is controlled by the parasympathetic nervous system. It has been shown that the resting heart rate is a measure of your Vagus nerve function and predicts mortality.
Findings show that people who suffer from CRPS have an increased heart rate and decreased Heart Rate Variability, as well as general autonomic imbalance.
Vagus nerve suppression will lead to inflammation of the tissue of the heart, causing tissue injury, preventing remodeling of cells, and leading to cell death. Vagus nerve stimulation, in turn, will prevent tissue injury and cell death in the heart.
In summary, as a result of nervous system dysfunction, Complex regional pain syndrome (CRPS) can affect the heart in a number of ways causing symptoms such as:
To learn more, check out How Your Vagus Nerve Affects Your Heart & Lungs.
Disclaimer: The information written on this website is designed to provide helpful information on various conditions and the subjects discussed. This website is not meant to be used to diagnose or treat any medical condition or to replace the advice of your physician(s). The author of this website does not claim to treat, diagnose or cure Long COVID, CRPS, EDS/POTS, AMPS, or any other specific condition or infection. The Spero Clinic treats the central nervous system only, often resulting in the body being able to heal itself.
You should regularly consult a physician in matters relating to your health, particularly with respect to any symptoms that may require diagnosis or medical attention. For diagnosis or treatment of any medical problem, consult your own physician(s).
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