Chapter - RSD and Me
2 Corinthians 12:7-10King James Version (KJV)
7 And lest I should be exalted above measure through the abundance of the revelations, there was given to me a thorn in the flesh, the messenger of Satan to buffet me, lest I should be exalted above measure.
8 For this thing I besought the Lord thrice, that it might depart from me.
9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.
10 Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong.
King James Version (KJV)
by Public Domain
RSD. Three letters that ended up being a huge part of my life. In 1997, I had never heard of Reflex Sympathetic Dystrophy. Little did I know what a huge part of my life it would become. I am using a little information from the RSD website to explain what it is.
From the RSDSA Website:
You are likely here at the RSDSA website because you or a loved one are experiencing unexplained moderate-to-severe pain and are trying to find the cause. Perhaps a Google search of the symptoms got you to this page. You may have already visited one or more physicians.
A physician may have suggested that your symptoms could possibly be CRPS – Complex Regional Pain Syndrome – or, RSD – Reflex Sympathetic dystrophy, but that they do not specialize in this condition. You are on a journey for a concrete diagnosis. We can help.
First of all, you may or may not have CRPS/RSD. There are a number of conditions that have serious, chronic pain as a symptom, along with others that are also present in CRPS/RSD. Here you can learn more about this condition and its symptoms to help you and your doctor rule it in — or rule it out.
What is CRPS/RSD?
CRPS/RSD is a chronic neuro-inflammatory disorder. It is classified as a rare disorder by the United States Food and Drug Administration. However, up to 200,000 individuals experience this condition in the United States, alone, in any given year.
CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale.
CRPS generally follows a musculoskeletal injury, a nerve injury, surgery or immobilization.
The persistent pain and disability associated with CRPS/RSD require coordinated, interdisciplinary, patient-centered care to achieve pain reduction/cessation and better function.
It has been shown that early diagnosis is generally the key to better outcomes. However diagnosing CRPS/RSD is not a simple matter and many patients search for months or years for a definitive diagnosis.
It is important to know that research has proven that CRPS/RSD is a physical disorder. Unfortunately, it has not been unusual for medical professionals to suggest that people with CRPS/RSD exaggerate their pain for psychological reasons. Trust your body and continue to seek a diagnosis. If it’s CRPS/RSD, the pain is not in your mind!
Making the Diagnosis
There is no single diagnostic tool for CRPS/RSD. Physicians diagnose it based on patient history, clinical examination, and laboratory results. Physicians must rule out any other condition that would otherwise account for the degree of pain and dysfunction before considering CRPS/RSD.
Early diagnosis and appropriate treatment offer the highest probability of effective treatment and possible remission of CRPS/RSD.
CRPS/RSD Signs and Symptoms Checklist
There is no gold standard for diagnosing CRPS/RSD. If the pain is getting worse, not better, and if the pain is more severe than one would expect from the original injury, it might be CRPS/RSD.
Look for these telltale signs and symptoms:
•Pain that is described as deep, aching, cold, burning, and/or increased skin sensitivity
•An initiating injury or traumatic event, such as a sprain, fracture, minor surgery, etc., that should not cause as severe pain as being experienced or where the pain does not subside with healing
•Pain (moderate-to-severe) associated with allodynia, that is, pain from something that should not cause pain, such as the touch of clothing or a shower
•Continuing pain (moderate-to-severe) associated with hyperalgesia, that is, heightened sensitivity to painful stimulation)
•Abnormal swelling in the affected area
•Abnormal hair or nail growth
•Abnormal skin color changes
•Abnormal skin temperature, that is, one side of the body is warmer or colder than the other by more than 1°C
•Abnormal sweating of the affected area
•Limited range of motion, weakness, or other motor disorders such as paralysis or dystonia
•Symptoms and signs can wax and wane
•Can affect anyone, but is more common in women, with a recent increase in the number of children and adolescents who are diagnosed
From the National Institute For Health:
What is Complex Regional Pain Syndrome?
Complex regional pain syndrome (CRPS) is a chronic pain condition. The key symptom of CRPS is continuous, intense pain out of proportion to the severity of the injury, which gets worse rather than better over time. CRPS most often affects one of the arms, legs, hands, or feet. Often the pain spreads to include the entire arm or leg. Typical features include dramatic changes in the color and temperature of the skin over the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling. Doctors aren’t sure what causes CRPS. In some cases the sympathetic nervous system plays an important role in sustaining the pain. Another theory is that CRPS is caused by a triggering of the immune response, which leads to the characteristic inflammatory symptoms of redness, warmth, and swelling in the affected area.
Is there any treatment?
Because there is no cure for CRPS, treatment is aimed at relieving painful symptoms. Doctors may prescribe topical analgesics, antidepressants, corticosteroids, and opioids to relieve pain. However, no single drug or combination of drugs has produced consistent long-lasting improvement in symptoms. Other treatments may include physical therapy, sympathetic nerve block, spinal cord stimulation, and intrathecal drug pumps to deliver opioids and local anesthetic agents via the spinal cord.
What is the prognosis?
The prognosis for CRPS varies from person to person. Spontaneous remission from symptoms occurs in certain individuals. Others can have unremitting pain and crippling, irreversible changes in spite of treatment.
What research is being done?
The National Institute of Neurological Disorders and Stroke (NINDS) and other institutes of the National Institutes of Health (NIH) conduct research relating to CRPS and also support additional research through grants to major medical institutions across the country. NINDS-supported scientists are studying new approaches to treat CRPS and intervene more aggressively after traumatic injury to lower the chances of developing the disorder. Researchers hope to identify specific cellular and molecular changes in sensory neurons following peripheral nerve injury to better understand the processes that underlie neuroplasticity (the brain’s ability to reorganize or form new nerve connections and pathways following injury or death of nerve cells). Identifying these mechanisms could provide targets for new drug therapies that could improve recovery following regeneration. Other researchers hope to better understand how CRPS develops by studying immune system activation and peripheral nerve signaling using an animal model of the disorder.
My “good” leg with RSD.
Clinical features of CRPS have been found to be neurogenic inflammation, nociceptive sensitisation, vasomotor dysfunction, and maladaptive neuroplasticity. The symptoms of CRPS usually initially manifest near the site of a, typically minor, injury. The most common symptoms are pain sensations, including burning, stabbing, grinding, and throbbing. Moving or touching the limb is often intolerable. The patient may also experience muscle spasms, local swelling, sensitivity to things such as water, touch, and vibrations, abnormally increased sweating, changes in skin temperature (usually hot but sometimes cold) and color (bright red or a reddish violet), softening and thinning of bones, joint tenderness or stiffness, and/or restricted or painful movement. Falls, pre-syncope, and syncope (fainting) are infrequently reported, as are visual problems. Regional Osteoporosis is possible. The symptoms of CRPS vary in severity and duration. Since CRPS is a systemic problem, potentially any organ can be affected.
The pain of CRPS is continuous, and it is widely recognised that it can be heightened by emotional or physical stress.
Complex regional pain syndrome's cause is unknown. Nerve damage is considered to be the cause in many cases. Evidence of nerve damage as the trigger for CRPS is supported by observations that the disruption of certain nerve relationships to pain signaling result in improvements for patients.
Patients are frequently classified into two groups based upon temperature: "warm" or "hot" CRPS in one group and "cold" CRPS in the other group. The majority of patients (approximately 70%) have the "hot" type, which is said to be an acute form of CRPS. Cold CRPS is said to be indicative of a more chronic CRPS and is associated with poorer McGill Pain Questionnaire (MPQ) scores, increased central nervous system involvement, and a higher prevalence of dystonia. Prognosis is not favourable for cold CRPS patients; longitudinal studies suggest these patients have "poorer clinical pain outcomes and show persistent signs of central sensitisation correlating with disease progression".
Previously it was considered that CRPS had three stages; it is now believed that patients with CRPS do not progress through these stages sequentially. These stages may not be time-constrained and could possibly be event-related, such as ground-level falls or re-injuries of previously damaged areas. thus, rather than a progression of CRPS from bad to worse, it is now thought, instead, that patients are likely to have one of the three following types of disease progression:
1."Stage" one is characterized by severe, burning pain at the site of the injury, muscle spasms, joint stiffness, restricted mobility, rapid hair and nail growth, and vasospasm. The vasospasm is that which causes the changes in the color and temperature of the skin. Some may experience hyperhydrosis (increased sweating). In mild cases this stage lasts a few weeks, in which it can subside spontaneously or respond rapidly to treatment (physical therapy, pain specialist).
2."Stage" two is characterized by more intense pain. Swelling spreads, hair growth diminishes, nails become cracked, brittle, grooved, and spotty, osteoporosis becomes severe and diffuse, joints thicken, and muscles atrophy.
3."Stage" three is characterized by irreversible changes in the skin and bones, while the pain becomes unyielding and may involve the entire limb. There is marked muscle atrophy, severely limited mobility of the affected area, and flexor tendon contractions (contractions of the muscles and tendons that flex the joints). Occasionally the limb is displaced from its normal position, and marked bone softening and thinning is more dispersed.
McGill Pain Index
Reflex Sympathetic Dystrophy (causalgia) has a score of 42 out of 50 on the McGill Pain
Index. RSD in the most painful chronic disease that is known.
The McGill Pain Questionnaire was developed in 1971 by Ronald Melzack and Warren Torgerson from McGill University in Canada. Their paper On the Language of Pain [Anesthesiology, 1971, v 34] proposed what was then a novel idea: It is not only the intensity of pain that matters. Each disease produces a different quality of pain: we have the burning of causalgia; the stabbing or cramping of visceral pain; and so on. The quality of pain provides a key to diagnosis and may even suggest a course of therapy.
Over several years, patients in a variety of settings were asked to fill out the McGill Pain Questionnaire. Pain scores were obtained from:
•Women during labour Melzack et al 1981 CMAJ 125(4)
•Patients in a general hospital pain clinic Melzack 1975 Pain 1(3)
•Patients in a hospital emergency department Melzack and Wall 1982 Pain 14(1)
•A group of patients with a confirmed diagnosis of causalgia (RSD) Tahmoush 1981 Pain 10(2)
Results of the study: For any specific disease, the descriptive words chosen by patients were remarkably similar. So were the pain scores. Substantial portions of the words had the same relative positions on a common intensity scale for people from widely divergent social and ethnic backgrounds.
Melzack and Torgerson used this data to create the McGill Pain Index. It is a yardstick to quantify pain. The Index compares three categories of pain: Labour pain, clinical pain syndromes, and pain after trauma or accident. It takes the visual form of a bargraph (illustrated below).
That is enough of the technical medical explanation of RSD. What does it mean to me?
It is a very wicked chronic disease. To be sure, there are much worse diseases to have. Diseases that won’t just at times make you wish you were dead but will actually kill you, so I have much to be thankful for! It means I am never and unless God decides to heal me never will be without pain. It is my constant companion. It means I never have a good day physically, only better days or worse days.
It means many sleepless nights. Just the cover lightly brushing over an effected area hurts terribly and wakes you. It means missing many important family events because you just literally can’t function. It means having to make difficult decisions. You know if you do certain activities you are really going to pay for it for days, sometimes weeks. So you have to decide is whatever you need or want to do worth the pain to recover. Every time I finish a book I have a flare up that will usually make my life miserable for up to two weeks or more.
It means if you have to get up in the morning for any reason, Drs. Appointment or something you have to set your alarm clock for at least two hours earlier than you would have before the RSD. It takes at least two hours to get the pain under control enough to begin getting ready.
It means sometimes, when a flare up is in my face, having to take a soft cloth and lay it over my lips to keep the air from my nose away from my lips. You can’t even begin to imagine the pain from a lite brush of air can cause. When a flare up is in my face it means no reading or TV, because I can’t stand the light or the breeze hitting my eyes from a fan, air conditioner, or heater. I just sit with my eyes closed, with a soft cloth over my mouth and try to be very still. I concentrate as hard as I can on making my muscles relax. I try very hard not to grit my teeth or clinch my jaws in pain, because it makes it worse.
It means sometimes in a bad flare up having to remind yourself to take a breath. The pain is so intense I often find myself holding my breath during a bad flare up. It means trying to hide the pain so those who love you don’t feel so helpless and suffer because you do. It means having to come up with excuses for not doing things with friends and family because the pain just won’t let you. It means there are times when it takes every ounce of strength you can come up with to not let your loved ones see you cry.
It means financial ruin. Dr. co-pays, medicine co-pays, procedure co-pays, durable medical goods co-pays, etc. It means dealing with all the new changes with the CDC and the DEA regarding opioid use. I understand we have an epidemic in our country. Drug abuse is at an all-time high, I am not opposed to stricter rules. I am not even opposed to having to suffer a little more for the good of society.
It means often even in the heat of summer being able to touch my jeans and feel the cold coming from my leg. It means sometimes getting cramps in my leg. So bad you can touch my leg and it feels as hard as an ice cold baseball.
Now you have read the medical and technical definition of RSD. You have seen the bad of living with RSD. It’s time for the good!
My disease sometimes gets the best of me and keeps from doing so much I need to do. I get frustrated and angry with myself when I allow it to win and keep me from things I need or want to do. Sometimes it provides some awesome Blessings. If not for it waking me so early in the mornings, I would sleep right through so many sunrises. Sitting outside with my fire and my coffee listening to the wild turkeys, the geese, and other wild life. Watching the deer graze across the driveway. So many things I would miss and never even realize it if not for this disease. God is good!
Without this disease I would not have the luxury of sitting out on my deck early in the mornings while almost everyone is asleep. I get to talk to God and be still so I can feel His presence! I get to catch up on the news and pray for those in need.
Without this disease I probably wouldn’t have the relationship I have with my Lord and Savior. Without this disease I am certain my framed license to Preach would not be hanging on my wall. Without this disease I would have never have written 4 books and 2 more nearing completion!
There is nothing quite as beautiful as looking up at the stars on a crisp cool morning. I just sit there in my wheelchair in awe of the sky our Lord created.