RSD Advisory is an information, resource, support and research friendly adversaria relating to RSD(S)/CRPS, Reflex Sympathetic Dystrophy Syndrome, known also as, Complex Regional Pain Syndrome. Included here also will be information which might be directly or indirectly associated with CRPS/RSD itself. Having been diagnosed myself in 2003, after a 2 year delay, I can honestly say it’s been a hard and unstable ride.
January 26 2013 was the 12 year anniversary of the injury that led me through this tumbling journey. In a work related accident on January 26, 2001, the side of my shirt snagged on an unsecured fire extinguisher hanging on the outside of another employee’s grocery checker station. I was walking semi quickly as this occurred as the store was busy and I proceeded to trip and stumble across the store several times, crashing into displays, trying to use my hands to catch air, anything, I was never able to catch myself or able to stop the fall. I was grabbing at air, but nothing was there to lend a hand.
Taken by ambulance from work that evening, I was diagnosed with a sprain/strain. A misdiagnosis as it was learned nearly 6 weeks later and after 3 physical therapy sessions that the tendons were actually torn from the bones of my right foot. I had a Mid-Metatarsal Separation. Surgery followed to insert a Lis Frank screw to attempt to attach the tendons and ligaments back onto the bones. The screw was removed 6 months later and my foot took on an abnormal healing path which led to my diagnosis in 2003.
More of my story can be found here-
My Story- The first 6 years
It has become my passion and purpose to promote awareness and offer support and assistance to others like me, to their families and friends so that they too might learn about this chronic neurological, neuropathic and auto immune disorder and the debilitating outcome many of us face.
A support system is necessary to achieve the best possible future for both the patient, the caregiver(s) and their families. ~Twinkle V.
I am the California State Ambassador for the Power of Pain Foundation. I am honored to have been chosen to work for such a wonderful team.
I work both for the Power of Pain and Independently.
Please feel welcome to join my RSD(S)-CRPS Advisory Info & Support Group
Which is located on Facebook. Originally created on MySpace nearly 10 years ago. It is a closed group.
We take the privacy of our members very seriously. We are a family oriented group and want our family to be able to share what they like. On the internet it is difficult to secure everything that is said. Insurance companies, physicians, psychiatrists, worker’s compensation, family, friends, anyone can be watching. This is why we do our best to protect you. Nothing is fool proof though.
If you attempt to join and it seems it’s taking a bit for your request to be approved it is because we are checking to see if you are a CRPS/RSD patient, if you are a caregiver, or if you are serious about learning.
Trudy Thomas, Featured Blog Talk Host of Living with HOPE Radio show and several other shows on her Body, Mind and Spirit Network and long time member of our group is second in charge beneath me. She will add you as a friend. There must always be an open line of communication between Leader’s and Member’s. We no longer allow other groups to advertise their groups within ours, we did allow this until recently and it was taken advantage of. Once you are approved please read the Group “About” located on top and the Addendum to the About page in our files section and then make yourself at home. We do still allow sharing, but I ask that you request permission from either myself or Trudy prior to especially if it consists of advertising If Trudy requests a friend invite and contacts you regarding your request to join and you do not answer her the likelihood of your request being granted in a timely manner or at all is nil.
We hope to see you there!
Complex regional pain syndrome (CRPS) is a chronic condition characterized by severe pain following injury to bone and soft tissue. The International Association for the Study of Pain has divided CRPS into two types based on the presence of nerve lesion following the injury. Type I, also known as Reflex sympathetic dystrophy (RSD) or Algoneurodystrophy, does not have demonstrable nerve lesions, while type II, also known as causalgia, has evidence of obvious nerve lesions. The cause of these syndromes is currently unknown.The condition currently known as CRPS was originally described by Weir Mitchell during the American Civil War, who named the condition causalgia. In the 1940s, the term reflex sympathetic dystrophy came into use to describe this condition, based on the theory that sympathetic hyperactivity was involved in the pathophysiology (Evans, 1946). Misuse of the terms, as well as doubts about the underlying pathophysiology, led to calls for better nomenclature. In 1993, a special consensus workshop held in Orlando, Florida provided the umbrella term, complex regional pain syndrome, with causalgia and RSD as its subtypes. The symptoms of CRPS usually occur near the site of an injury, either major or minor, and usually spreads beyond the original area. It may spread to involve the entire limb and, rarely, the opposite limb. The most common symptom is burning pain. The patient may also experience muscle spasms, local swelling, increased sweating, softening of bones, joint tenderness or stiffness, restricted or painful movement, and changes in the nails and skin.The pain of CRPS is continuous and may be heightened by emotional stress. Moving or touching the limb is often intolerable. Eventually the joints become stiff from disuse, and the skin, muscles, and bone atrophy. The symptoms of CRPS vary in severity and duration.
There are three variants of CRPS, previously thought of as stages.
It is now believed that patients with CRPS do not progress through these stages sequentially and/or that these stages are not time limited. Instead, patients are likely to have one of the three following types of disease progression:
Type one is characterized by severe, burning pain at the site of the injury. Muscle spasm, joint stiffness, restricted mobility, rapid hair and nail growth, and vasospasm (a constriction of the blood vessels) that affects color and temperature of the skin can also occur.
Type 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.
Type 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 is more dispersed.
No specific test is available for CRPS, which is diagnosed primarily through observation of the symptoms. However, thermography, sweat testing, x-rays, electrodiagnostics, and sympathetic blocks can be used to build up a picture of the disorder. Diagnosis is complicated by the fact that some patients improve without treatment. A delay in diagnosis and/or treatment for this syndrome can result in severe physical and psychological problems.
Early recognition and prompt treatment provide the greatest opportunity for recovery.
Physicians use a variety of drugs to treat CRPS, including antidepressants, corticosteroids, vasodilators, gabapentin, and alpha- or beta-adrenergic-blocking compounds. Elevation of the extremity and physical therapy are also used to treat CRPS. Injection of a local anesthetic, such as lidocaine, is usually the first step in treatment. Injections are repeated as needed. TENS (transcutaneous electrical nerve stimulation), a procedure in which brief pulses of electricity are applied to nerve endings under the skin, has helped some patients in relieving chronic pain. Neurostimulation (spinal cord stimulators) may also be surgically implanted to diffuse the pain by replacing it with a tingling sensation. These devices place electrodes either in the epidural space (space above the spinal cord) or directly over nerves located outside the central nervous system. Implantable drug pumps may also be used to deliver pain medication directly to the cerebrospinal fluid which allows the use of powerful opioids to be used in a much smaller dose than when taken orally. Ketamine infusion to treat CRPS has been described (Correll et al, 2004).
(Ketamine is known to block NMDA receptors and has helped many. It is not a cure!)
Surgical, chemical, or radiofrequency sympathectomy — interruption of the affected portion of the sympathetic nervous system — can be used as a last resort in patients with impending tissue loss, edema, recurrent infection, or ischemic necrosis (Stanton-Hicks et al, 1998). (This can cause more harm than good and I would advise against it)
Physical therapy is also an important part of treatment, though it should be noted that many patients are incapable of participating in physical therapy due to subsequent muscular and bone problems. People struggling with CRPS often develop guarding behaviors where they avoid using or touching the affected limb. Unfortunately, inactivity can exacerbate the disease and perpetuate the pain cycle. Physical therapy works best for some patients, especially goal-directed therapy, where the patient begins from an initial point, regardless of how minimal, and then endeavors to increase activity each week. While the unpredictability of this illness often causes a frustrating pattern of progress and regress, it is essential to continue to try to increase and normalize physical activity.
Good progress can be made in treating CRPS if treatment is begun early, ideally within 3 months of the first symptoms. Early treatment often results in remission. If treatment is delayed, however, the disorder can quickly spread to the entire limb and changes in bone and muscle may become irreversible. In 50 percent of CRPS cases, pain persists longer than 6 months and sometimes for years.
CRPS has characteristics similar to those of other disorders, such as shoulder-hand syndrome, which sometimes occurs after a heart attack and is marked by pain and stiffness in the arm and shoulder; Sudeck syndrome, which is prevalent in older people and women and is characterized by bone changes and muscular atrophy, but is not always associated with trauma; and Steinbrocker syndrome, which includes symptoms such as gradual stiffness, discomfort, and weakness in the shoulder and hand.
The National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH), supports and conducts research on the brain and central nervous system, including research relevant to RSDS, through grants to major medical institutions across the country. NINDS-supported scientists are working to develop effective treatments for neurological conditions and, ultimately, to find ways of preventing them.Investigators are studying new approaches to treat RSDS and intervene more aggressively after traumatic injury to lower the patient’s chances of developing the disorder. In addition, NINDS-supported scientists are studying how signals of the sympathetic nervous system cause pain in RSDS patients. Using a technique called microneurography, these investigators are able to record and measure neural activity in single nerve fibers of affected patients. By testing various hypotheses, these researchers hope to discover the unique mechanism that causes the spontaneous pain of RSDS and that discovery may lead to new ways of blocking pain.Other studies to overcome chronic pain syndromes are discussed in the pamphlet “Chronic Pain: Hope Through Research,” published by the NINDS.
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This Facebook page originally created to share news of all interests and to discuss those interests, politics, health, etc was recently changed. Previous posts unrelated to CRPS/RSD and/or Health have either been deleted or hidden from the page. The page is now for advertising your events, radio shows, blogs, websites, pages, updates, announcements etc.
It is an information and sharing resource!
I do not discriminate against the types of blogs or pages people share especially those that include depression or MDD.
We all have our own light and dark to journey through.
Please be sensitive to the matter. You do not have to read anything that bothers you in any way. It’s easy to scroll over anything. Or click that X in the corner of your screen.
Thank you again!