Written and researched by Tracey (Tipton) Morales for the RSDSA blog.
RSD (Reflex Sympathetic Dystrophy), is what I was diagnosed with and was the name used for years. The current name is CRPS (Complex Regional Pain Syndrome), although the name seems to constantly be changing, I have recently heard it referred to as AMPS (Amplified Musculoskeletal Pain Syndrome) and RND (Reflex Neurovascular Dystrophy). Confusing right?
I know, this is probably why there is very little knowledge out there about this disease, especially among medical professionals, and why there is not enough research and no cure. But that subject, the many names of RSD/CRPS, is for another post, on another day. The more information we share about RSD/CRPS the better it will be for all of us with this disease. We all need to continue to educate people, advocate for more Awareness and support one another every day, not just during November.
So what is RSD/CRPS?
RSD/CRPS, nicknamed “The Suicide Disease,” is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain. The key symptom is continuous, intense pain out of proportion to the severity of the injury, which gets worse rather than better over time. It most often affects one of the arms, legs, hands, or feet. Often the pain spreads to include the entire arm or leg. It then in some cases, a lot of cases, spreads to other parts of the body. The pain is described as excruciating and burning in most cases.
RSD/CRPS usually occurs as a result of an injury, trauma, or surgery when a sympathetic nerve in the body is damaged in some way. The sympathetic nervous system then malfunctions, going into “overdrive” and making a continuous loop of pain signals that becomes worse and worse over time.
Understanding the Nervous System
There are many nervous systems in the body and they are all connected. Therefore when one becomes damaged others can be affected causing a wide range of symptoms and health problems.
• The CNS (Central Nervous System) controls most functions of the body and mind. It consists of two parts: the brain and the spinal cord. The brain is the center of our thoughts, the interpreter of our external environment, and the origin of control over body movement. The spinal cord carries signals (messages) back and forth between the brain and the peripheral nerves.
• The PNS (Peripheral Nervous System) consists of the nerves and ganglia on the outside of the brain and spinal cord. The main function of the PNS is to connect the central nervous system (CNS) to the limbs and organs, essentially serving as a communication relay going back and forth between the brain and spinal cord with the rest of the body.
• The ANS (Autonomic Nervous System) regulates bodily functions, such as the heart rate, digestion, respiratory rate, pupillary response, urination, and sexual arousal. This system is the primary mechanism in control of the fight-or-flight response, to which the Sympathetic Nervous System responds to.
• The SNS (Sympathetic Nervous System) is one of the two main divisions of the autonomic nervous system, the other being the parasympathetic nervous system. The SNS produces localized adjustments (such as sweating as a response to an increase in temperature) and reflex adjustments of the cardiovascular system. Under conditions of stress, the entire sympathetic nervous system is activated, producing an immediate widespread response called the fight-or-flight response. This response is characterized by the release of large quantities of epinephrine from the adrenal gland, an increase in heart rate, an increase in cardiac output, skeletal muscle vasodilation, cutaneous (skin) and gastrointestinal vasoconstriction, pupillary dilation, bronchial dilation, and piloerection (goosebumps).
• The PSNS (Parasympathetic Nervous System) affects the heart, lungs, eyes, digestive system and blood vessels. It does the opposite of the sympathetic nervous system and the two nervous systems balance each other’s effects. While the Sympathetic nervous system has “fight or flight” responses, the Parasympathetic nervous system lets the person “rest and digest”.
• The SoNS (Somatic Nervous System) is associated with skeletal muscle voluntary control of body movements. The SoNS consists of afferent nerves and efferent nerves. Afferent nerves are responsible for relaying sensation from the body to the central nervous system (CNS); efferent nerves are responsible for sending out commands from the CNS to the body, stimulating muscle contraction; they include all the non-sensory neurons connected with skeletal muscles and skin.
So what does the Sympathetic Nervous System do and how is it related to RSD/CRPS?
The Sympathetic Nervous System is the system that activates when you are scared, stressed or injured. For instance, when you are walking alone in the dark and you think someone is following you and you get scared it is the Sympathetic Nervous System reacting. It responds by diverting blood flow from the limbs to send the blood to the heart, lungs, and brain so you can think fast, move fast and get to safety. When the crisis is over the SNS shuts off until it is needed again. Stress, worry, trauma or injury can turn this nervous system on as well.
With RSD/CRPS the sympathetic nerve gets damaged or turned on as the result of an injury, trauma, stress or surgery, but the damaged sympathetic nerve remains on. It does NOT shut off the way it is suppose to even though the trauma, event or injury is over and/or healed.
This causes a decrease in blood circulation to the area or areas that are affected, which is usually temporary, but when the sympathetic nerve does not shut off, which is the case in RSD/CRPS, this decreased circulation affects the bones, muscles, tendons, and ligaments in the limb or affected area. The decrease in blood flow makes the affected limb or area cold, giving it a red, blue or purple coloring, or mottling. It can cause changes in the skin, nails and hair. It causes inflammation in the area that the body no longer knows how to respond to, it affects proper movement, and most importantly it causes PAIN.
Is RSD/CRPS painful?
Yes, it is incredibly painful, debilitating in many cases. RSD/CRPS is the most painful condition known to medicine. According to the McGill Pain Scale, which is a scale of rating pain developed at McGill University in 1971, by Ronald Melzack, a Canadian psychologist and professor of psychology, and Warren Torgerson,
a professor of psychology at the Johns Hopkins University who was internationally known for his work in psychological measurement. RSD/CRPS is more painful then natural child birth or even having a digit amputated, without anesthesia. It causes pain to be greater or out of proportion to the injury or trauma. The pain should have stopped when the injury healed but the damaged nerve continues to tell the body it is still in pain.
Can RSD/CRPS spread?
Yes, unfortunately it can. All of our nerves are connected in lines called nerve pathways. Between each nerve is a gate. When the damaged sympathetic nerve stays on it can excite the nerve next to it opening the gate and turning on the next nerve. These nerves can be turned on throughout the entire body, this includes affecting internal organs like the eyes, heart, lungs, stomach, bladder, and other organs in the body. Anywhere the body has a nerve can be affected.
The damaged nerve can cause many sensations other than pain. It can cause stinging, numbness, tingling, coldness, but at the same time making the affected area(s) feel like they are on fire, known as the fire & ice burn. For most people with RSD/CRPS just touching the affected area can make their pain worse. Wearing clothes can make it worse, a hug or being touched can actually be painful, changes in the weather can make the pain worse, sitting, walking, and even laying down can be painful for most. Those are just some of the physical symptoms caused, there are a whole slew of other physical, psychological and emotional symptoms that come with this disease.
What are the symptoms of RSD/CRPS?
RSD/CRPS invariably involves the internal organs, usually the skin surface is cold at the expense of increased circulation to the internal organs. This increased circulation can cause osteoporosis, fractures of bone, abdominal cramps, diarrhea, disturbance of absorption of foods with resultant weight loss, water retention with aggravation of headaches, persistent nausea and vomiting, as well as severe vascular headaches often mistaken for “cluster headaches”. Other symptoms can include depression, brain fog, anxiety, insomnia, anger, weight loss, weight gain, sleep disturbances, migraines, itching, swelling, full body spasms, GI issues, throbbing pain, sensitivity to touch or cold, changes in skin temperature — alternating between sweaty and cold, changes in skin texture and appearance — making the skin thin or appear shiny, muscle spasms, tremors, weakness and atrophy in both muscle and skin, decreased motion, allodynia, burns or blisters…. the list never ends…
In addition, RSD/CRPS can cause the complication of intractable hypertension. RSD/CRPS can cause attacks of irregular or fast heart beat, chest pain, coronary artery spasm (angina), as well as disturbance of function of other internal organs. A few examples are frequency and urgency of urination, respiratory disturbance such as dyspnea (labored breathing) and apneic attacks, and attacks of severe abdominal pain.
It can cause inflammation of the ovaries, uterus or small bowel.
Attacks of fluctuating blood pressure may also be accompanied by constriction of the blood vessels to the kidney resulting in periodic bleeding in the urine as well.
Attacks of swelling of the internal organs complicated by intermittent constriction of the blood vessels to different organs can result in chest pain, attacks of sharp central pain (stabbing severe pain in the chest or abdomen), and changes in voice (suddenly developing a temporary “chipmunk” type of voice change). It can also cause hypersensitivity to sounds, smell and aversion to taste of certain foods.
All of these symptoms, physical, psychological and emotional can cause the pain to become exacerbated. It can be a constant circle of neverending pain and emotions that can take a toll on a person and affect their health in many ways.
Our symptoms can change from day to day with this disease, so if we are up one day and down the next, it is just another down side of this disease.
Is there a cure?
There is NO CURE for RSD/CRPS. Some people are able to reach remission, in which they are able to shut the nerve off again, but it is not a cure and sometimes only lasts for a short time, months, sometimes years if they are lucky. Most with this disorder never get into remission, unfortunately.
Are there treatments?
Most Doctors treat it with medications. While some of the medications they suggest can have horrible side effects or are not helpful, many do have success with them helping to reduce the pain and/or symptoms. However, the relief is usually short lived in most cases and changes in medication or increases in dosage and strength often have to be made. Physical therapy and/or water therapy can be helpful but should be done with a therapist that is knowledgeable about RSD/CRPS because over exerting or pushing oneself can cause more damage or spreading.
There are also procedures that involve injections of medications and nerve blocks that try to shut the nerves off. Some times they help, more often they do not. Nerve blocks and more importantly physical therapy can help improve the blood circulation calming down the inflammatory affect of RSD/CRPS over the internal organs. Although, the internal organs complication may become aggravated by a traumatic effect of the sympathetic nerve blocks. One such complication is accidental trauma to the kidney with resultant hematuria (blood in urine) and aggravation of hypertension.
There are devices that are surgically implanted to the body that attach to nerves in the spine to try and decrease the pain and shut off the nerves, however, those require an extremely invasive surgery and they too only help a few with this disorder. Many are left in more pain and with more complications than before. There are holistic therapies that can be tried like acupuncture, homeotherapy and Chinese medicine, however they are not usually covered by insurance and it can be difficult to find knowledgeable practitioners. Ketamine infusions have become more popular and have proven to be effective in reducing pain for many and even helping some to reach remission, but the infusions are not always covered by insurance and can be very expensive. Infusions are normally needed every few months for years in most cases.
There are TENS units, which can cause more pain for some but can help others. A TENS unit helps to block the pain signal, but they can also cause vibrations, zapping or burning that can further aggravate pain. There is also PEMF therapy, which has been proven to reduce inflammation and pain with over 10,000 clinical trials. PEMF therapy actually regenerates damaged cells, nerves, tissue, bone and collagen, reducing inflammation and increasing blood circulation therefore reducing pain at it is source as opposed to simply blocking pain like a TENS unit. With PEMF therapy, there are no reported side affects and you feel nothing, no vibrations, no zapping or burning. PEMF therapy can take time for the full benefits to be felt, but in most cases, like mine, it is well worth the wait. There are different types of PEMF therapy available in Drs offices and for use at home. I have been using a PEMF therapy device since 2017 and it is greatly reduced my pain and allowed me to wean off the pain meds that I was on for 18 years. Unfortunately, PEMF therapy is not usually covered by insurance and can be very expensive depending on the type of device you purchase.
As you can surmise, there is not one treatment that works for everyone, we are all different and respond differently to medications and other treatments.
We desperately need more treatments, more treatments that are covered by insurance and that are more affordable. With all of the medication cutbacks due to the CDC’s opioid epidemic, patients are now being weaned off or cut off completely from their legally prescribed medications that have helped. Medications that they have been on for years successfully with no issues. Good, caring and legitimate doctors are being hounded and arrested by the DOJ for no good reason at all, leaving patients with no where to turn. Trying to find a new Dr is sometimes impossible now because Drs are so afraid to take on new patients with a history of or presently needing opioid pain medication, afraid that the DOJ will be knocking on their door next. Patients are going through horrible, unnecessary withdrawals, dramatic increases in pain and loss of what independence they may have had previously. Unfortunately, they are being left with few choices, one, to suffer, which most do, two, they are forced to turn to illegal street drugs, which is very dangerous, or lastly, to commit suicide, which many have done, due to their pain being so unbearable and having no where to turn to for help, making the nickname “The Suicide Disease” even more true.
For me, it is been an incredible undertaking to make the journey from a vibrantly healthy person to someone with an incurable, progressive disease. I have had 24 years to learn how to navigate this disease, and although I have learned to deal with it and most everything that comes with it, it does not ever go away, and it is always throwing something new at me. It has gotten easier for me thanks to the treatment I found 4.5 years ago, but for almost, every day, every month, every year my pain becomes more difficult than the last.
Unless you have lived this, you can never fully understand all that comes with it… the emotional roller coaster, the changes, the loneliness, the fear, the sorrow, losing your friends because you do not want to be a burden on them because you can not keep up with them, losing family because they cannot “deal” with you being sick, losing who you once were, and having limitations you never dreamed about that cause you to depend on others to do things for you that you easily did for yourself at one time.
Do not judge what you cannot see or fully understand and please do not take even the smallest of things for granted… you can lose them in the blink of an eye.
If you know someone with RSD/CRPS or another “Invisible Illness” please show them compassion, understanding and support. Try to learn more about their illness, ask questions about their illness, or about what you can do to help them, what they may need. Please do not offer advice like, think more positively, or go on a diet and lose weight (our weight has nothing to do with our pain), do not suggest exercise (that will usually cause more pain), do not tell them that it is all in their head (trust me, it is not) and please do not suggest that if we go to church more or pray it will make us better (like we have not prayed for a cure or to make the pain stop, please). Most people with chronic illness have tried just about everything, conventional and non-conventional. We cannot and usually do not just get better.
This, unfortunately, is the new way of life for us. Learning to live with it is enough to deal with every day without having someone tell us we are not doing enough or we are not doing the right things. It is NOT our fault that we are sick and/or in pain, we did not ask for this (no one in their right mind would), we are not faking or exaggerating, we are not being lazy. We are sick, we are in pain, excruciating, debilitating pain.
All we want is to be believed, supported and loved. Show us the same care and compassion that you would show someone with a broken arm or with cancer. Just because you cannot see it or understand it does not mean it is not real.
For all of my Warriors out there: NEVER GIVE UP, STAY STRONG, KEEP FIGHTING, YOU GOT THIS!
There is hope. Keep trying new things, medications and treatments. You never know when that next one will work for you.
I am here for you, always.
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