CRPS / RSD: INFORMATION
Four Stages of the Disease | Autonomic Nervous System (ANS) | Diagnosis
There are aproximately a million Americans that have been diagnosed with Complex Regional Pain Syndrome (CRPS) also known as Relfex Sympathetic Dystrophy (RSD). Unfortunately, there are many more individuals that go undiagnosed with these agonizing conditions each and every year. According to statistics posted in JAMA the pain scale that is the pain scale utilized in all of the hospitals or facilities (1-10 pain scale; where 10 is the highest); CRPS/RSD suffer's typically have pain that is in the range of 15+ on an average day. This is real pain.
For the majority of patients this conditions starts in a limb. This can be an arm or a leg. It can start off from something as benign as an IV, an accident or unfortunately a mistake make during a surgery. Thus, you can see there are many ways that people can get CRPS or RSD.
From there time is of the essence. The sooner the patient is diagnosed, treatments are started, the more the patient is able to continue to move the affected area the better. And the greater the odds are of gaining remission. At this time there is no "Cure" for CRPS or RSD, the best you can hope for is long-term remission and that is the goal!
How is CRPS Diagnosed?
How CRPS is Diagnosed
Author: Katie L. Aker
Title: CRPS Diagnosis: A review of diagnostic tools
Dr. R. Norman Harden is a Professor of Physical Medicine and Rehabilitation at Northwestern University. Drs Harden and Bruehl were instrumental in validating the CRPS diagnostic criteria.
The experience and impact of CRPS
Drs. Getson and Harden talk about the importance of early diagnosis.
Three individuals with CRPS and a cargiver talk about the experience of having CRPS. Published on May 1, 2014
CRPS/RSD - A Review of 824 Patients
STAGES OF CRPS/RSD
CRPS/RSD has been divided into different stages. Depending on nature of injury, the stages vary in their duration. In the 17 patients suffering from venipuncture CRPS in our series, deterioration from stage I to stage III was measured in a few weeks up to less than 9 months. This is in contrast with CRPS in children in whom stages would stagnate, reverse or improve slowly. I have seen it listed as both 3 & 4 "Stages". I chose the later as it seemed more well defined based on the patient that has prompted this research. - V.
STAGE I - Acute Stage. may last up to 3 months. Burning pain and increased sensitivity to touch are the most common early symptom of CRPS. This pain is different — more constant and longer lasting — than would be expected with a given injury. CRPS/RSD is a sympathetic dysfunction with typical thermatomal distribution of the pain. The pain may spread in a mirror fashion to contralateral extremity or to adjacent regions on the same side of the body. In stage one; the pain is usually SMP in nature.
STAGE II - Dystrophic Stage Swelling and joint stiffness usually follow, along with increased warmth and redness in the affected limb. There may be faster-than-normal nail and hair growth and excessive sweating. Skin wrinkles may disappear. The dysfunction changes to dystrophy manifested by edema, hyperhidrosis, neurovascular instability with fluctuation of livedo reticularis and cyanosis - causing change of temperature and color of the skin in a matter of minutes. The dystrophic changes also include bouts of hair loss, ridging, dystrophic, brittle and discolored nails, skin rash, subcutaneous bleeding, neurodermatitis, and ulcerative lesions. Due to the confusing clinical manifestations, the patient may be accused of factitious self-mutilation and "Münchausen syndrome." All these dystrophic changes may not be present at the same time nor in the same patient. Careful history taking is important in this regard. Pain is more widespread, stiffness increases, and the affected area becomes more sensitive to touch.
STAGE III - Atrophic Stage The pain is usually no longer SMP and is more likely a sympathetically independent pain (SIP). Atrophy in different degrees is seen. Frequently, the atrophy is overshadowed by subcutaneous edema. The complex regional pain and inflammation spread to other extremities in approximately 1/3 of CRPS patients. At stage II or III it is not at all uncommon for CRPS to spread to other extremities. At times, it may become generalized. The generalized CRPS is an infrequent late stage complication. It is accompanied by sympathetic dysfunction in all four extremities as well as attacks of headache, vertigo, poor memory, and poor concentration. The spread through paravertebral and midline sympathetic nerves may be vertical, horizontal, or both. The original source of CRPS may sensitize the patient to later develop CRPS in another remote part of the body triggered by a trivial injury. The ubiquitous phenomenon of referred pain to remote areas (e.g., from foot or hand to spine) should not be mistaken for the spread of CRPS. Inflammation becomes more problematic and release of neuropeptides from c-fiber terminals results in multiple inflammatory and immune dysfunctions. The secondary release of substance "P" may damage mast cells and destroy muscle cells and fibroblasts.
Pain Digest- 1999; 9:1-24
H. Hooshmand, M.D. and H. Hashmi, M.D.
The MacGill Pain Chart
Reflex Sympathetic Dystrophy (Causalgia) has a score of 42 out of 50 on the McGill Pain Index, making RSD in the most painful chronic disease that is known.
RSD/CRPS patients are constantly searching for innovative treatments and approaches to relieve the high levels of pain their bodies are in constantly experiencin. The purpose of this study was to develop new approaches to the problem of describing and measuring pain in human subjects. Words used to describe pain were brought together and categorized, and an attempt was made to scale them on a common intensity dimension.
Emerging Ideas in Neuroscience
The importance of early Autonomic Nervous System and Sudomotor Function Testing when CRPS is suspected.
The use of ANS biosensor devices for Autonomic Nervous System and Sudopath Function would well serve patients in the early diagnosis to help rule in or out CRPS. These devices and their clinical applications not only in early detection and diagnosis, but also in the systemic monitoring of treatment efficacy.
Autonomic Nervous System
(Non-clinical description from an RSD patient)
The Autonomic nervous system is made up of the sympathetic system and the parasympathetic system.
Think of these systems working together and maintaining a balance that impacts every part of your body! Heart frequency, heart capacity, lumbar function, kidneys, blood vessels, stomach and intestines are just a few examples.
The sympathetic nervous system pushes where the parasympathetic function is more relaxed. The sympathetic chain nervous connects to skin, blood vessels and organs in the body cavity and is located on both sides of the spine which consists of ganglias.
The autonomic nervous system most notably kicks in gear during emergency situations that cause stress and requires us to “fight” or take “flight”, as well as non-emergency situations that allow us to “rest” and “digest”. The autonomic nervous system also provides maintenance of normal internal functions and works with the somatic nervous system. When the body reacts to signals such as danger, it is the sympathetic ganglia that performs functions such as widening the lungs for more oxygen, reduces desire to consume food, sends blood to the brain and increases heart rate.
Also this.....a little more complicated:
The sympathetic nervous system normally functions to produce localized adjustments (such as sweating) and reflex adjustments of the cardiovascular system. Under conditions of stress, however, the entire sympathetic nervous system is activated, producing an immediate, widespread response that has been called the “fight or flight” response. This 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 and gastrointestinal vasoconstriction, pupillary dilation, bronchial dilation, and piloerection. The overall effect is to prepare the individual for imminent danger.
Basically, all that means is that the sympathetic nervous system controls a LOT of activities in our body and it does it without us thinking about it. Given that RSD is a disorder of this system in our body, a lot of symptoms that don't seem to make sense can occur.....including flushing, your knee/leg getting hot or cold, your pupils dilating, or goose bumps even if you're sweating. Unfortunately, it is all part of the disorder. Given your age and the fact that you already have a lot of hormones being released, it could be even more pronounced in you.
It might be helpful for you to keep a little journal of when you notice this happening (times of day, times of your menstrual cycle, when you've last eaten, etc....) to see if you can find some connection to share with your doctors. Most importantly, try to remember that while this is concerning for you (as for us all who experience the same things) it is NOT uncommon for those who have RSD to have these strange things happen.
Learn more Critical Care Assessment bio-sensors >
Sudomotor Function and Sweating
Sudomotor testing is used in the clinical setting to evaluate and document neuropathic disturbances that may be associated with pain.
Sudomotor: "Sweat" and "motor" describes anything that stimulates the sweat glands. CRPS/RSD suffers are often challenged with excessive, spontaneous sweat events. Some patients get them in series -(ie. 3 times in succession and then another 3 8 hours later).
Sudomotor innervation is the cholinergic innervation of the sympathetic nervous system prominent in sweat glands which causes perspiration to occur via activation of muscarinic acetylcholine receptors.
The quantitative sudomotor axon reflex test (QSART), thermoregulatory sweat test (TST), sympathetic skin responses, and silastic sweat imprints are tests of sympathetic cholinergic sudomotor function. All of these tests measure only post-ganglionic sudomotor function.
The QSART device was first reported in detail in 1983 and its clinical use has spread since that time for the evaluation of autonomic dysfunction. The QSART measures axon reflex-mediated sudomotor responses quantitatively and evaluates post-ganglionic sudomotor function. Recording is usually carried out from the forearm and 3 lower extremity skin sites to assess the distribution of post-ganglionic deficits. Normative values for QSART have been established.
Advise to patients and caregivers:
- Plan on a lot more laundry
- Prepare changes of clothing in advance
- Keep laundry basket near the bed to ease handling
- Keep a water bowl and dry towels nearby at bedtime
- Large non-desposable cloth bedpads are more soft and washable
to protect mattress
- Line pillowcase with a soft cotton bedpad or towel so when you
change them, hpoefully the pillow is still dry.