Reflex Sympathetic Dystrophy Syndrome (RSDS) also called Complex Regional Pain Syndrome (CRPS), is a painful disorder affecting the nerves, blood vessels, muscles, tendons and bones, in later stages the immune system.
CAUSES:
Trauma: (broken bones, sprains, bruises), electric shock, surgery, arthritis, infection, improper injections or nerve damage from compression (carpal tunnel/cubital tunnel syndromes) can cause the sympathetic nervous system to go "crazy" causing a variety of chronic, painful, and sometimes bizarre symptoms.
Surgery: to try to remedy RSD/CRPS (pumps, nerve decompression, etc.) can make the condition worsen and enable it to spread to other parts of the body.
Repetitive motion, vibrations, temperature changes, stress, caffeine, alcohol, red meat, sharp cheese, and foods containing solanine which include tobacco can cause a worsening of symptoms or trigger a flare up.
There is no known explanation of why this disorder occurs in some people and not others. Some believe that sympathetic maintained pain is caused by nerves and tissues that have healed with changed DNA, The bodies immune system then sees the nerves and tissues as "enemies" and attacks them causing inflammation and pain.
This autoimmune response can explain why some women with RSD have remissions while pregnant. Hormones produced during pregnancy, responsible for keeping the bodies immune system from attacking the fetus, temporally stopped the RSD.
Others believe that a person is genetically predisposed to this condition by an over active sympathetic nervous system.
Some think that susceptibility factors may include genetic predisposition (HLA typing) and in some patients a tendency towards increased sympathetic activity.
This includes cold hands, hyperhidrosis (excessive sweating), or a history of fainting.(4)
Many think RSD is a result of misfiring or overactive sympathetic nerve fibers. An abnormal response to the normal pain cycle ensues, resulting in sympathetic maintained pain.
SYMPTOMS:
Not all patients have exactly the same symptoms but the most common are:
severe sensitivity to touch and temperatures
swelling
muscle spasms
myoclonic jerks
sweating,
muscle ticks
inflammation
anxiety, depression
trouble concentrating, irritability,
bone loss, skin lesions (rare),
immune system problems, with the most prominent symptom being chronic pain.
The pain has been described as burning, shooting, stabbing and aching. Some report bizarre feelings of cold water being splashed on the affected area, goose bump, and distonia (difficulty initiating movement).
Over time symptoms can change, become worse or better and sometimes spread to other areas apart from the original injury.
"Spreads are more common than people think"
Classifications when used are Stage 1, Stage 2 or Stage 3.
There is a Stage 4, but that is usually fatal with system wide internal organ failure at that point in the illness.
Other symptoms of RSD/CRPS, not always mentioned, caused by the malfunction of the sympathetic nervous system: allergies/asthma, absence or abnormal system are; menstrual cycle, chest pain, cardiac complications, chronic fatigue, autoimmune disorders such as arthritis and Crohn's disease, IBS ( digestive problems-acid reflux, constipation ), fibromyalgia/myofacial syndrome, hypertension, Raynauds disease, increased sensitivity to external stimuli ( sight, sound, smell ), insomnia, memory loss, migraine headaches, mood swings/anxiety, tremors, visual disturbances.(Cool
Blümberg, Jänig and Koltzenburg have discovered a new source of pain. It originates from the deep chemoreceptor c-fibres in muscle and bone. These chemoreceptors become activated with inactivity. Intermittent walking reduces the incidence of deep pain." (1 ) This explains why exercise is crucial in treating RSD/CRPS. Physical activity also triggers the release of endorphins, pituitary gland hormones, that function as natural opiates. Endorphins are considered to be 200 times more potent than morphine.(6) The word endorphin means "morphine within".
Many people with chronic pain do not manufacture enough endorphins, this causes two problems. The first is that your body is sending inappropriate pain messages, and it is not releasing endorphins to protect against the pain. The second is a lack of sufficient endorphins causes hypersensitivity to pain. There are ways we can work to increase our endorphins naturally and with medications.
Naturally occurring endorphins can be obtained by:
Exercise
Biofeedback
Meditation
Prayer
Bodywork
Massage
Hydrotherapy
Laughter
. Endorphin research suggests that there is a link between our emotional state and the health and well-being of our immune systems. So pleasant memories, exercise, sexual activity, laughter, are all ways we can increase our levels of endorphins and therefore help our body to fight pain through its own natural chemicals.(7)
The body weakens and pain increases when there is a dominance of repressed, bottled up danger emotions such as pain, anger, and fear. It is strengthened as a result of increased expression of such positive emotions as happiness, pleasure and love. Evidence shows that our emotions and thoughts "talk" with the billions of defense cells in our immune system.
The "limbic-hypothalamic system" of the brain is known as the major mind-body connector modulating the responses of the endocrine, immune, and autonomic nervous systems ( which includes the sympathetic nervous system ) in response to mental suggestions and beliefs. Sustaining a belief that recovery is possible can mobilize a healing response by activating all these major systems of mind-body communication and healing.(9)
What is the prognosis?
With regular exercise, taking good care of yourself mentally and physically, effective symptom treatment, good nights sleep, good nutrition, de-stress daily, and most important eliminating nerve stimulating factors such as caffeine, nicotine, and drugs/foods that stimulate the nervous system. The prognosis of a patient with RSD/CRPS is very good. You can learn to adapt and take control of your life again. Educating yourself and those close to you is empowering.
Don't give up hope!
Hopelessness and stress can cause a worsening of symptoms. It's important to take care of the mind as well as the body. Look at the things you are able to do and not dwell on what you can't do. The best way to recover is to adapt to the changes this disorder causes to the body.
It's OK to morn the way you once were. Everyone with a devastating disease, disorder, or injury goes through a period of grieving. Unless you are one of the lucky RSD/CRPS patients that experience a total remission, the best thing to do is, from now on, learn to work with your body the way it is.
You will probably have a limited amount of activities you are able to do in one day. Get to know your limits, but sometimes push a little beyond. Some days will be better than others. Learn to pay attention to what your body is telling you and if it's time to stop an activity, rest, then continue when the pain subsides.
It's important to continue, or to start back slowly to performing everyday normal tasks such as doing dishes (wear gloves if water bothers you), making the bed, doing laundry.
These tasks probably will take three times as long as it would before you were afflicted with RSD/CRPS. That's OK, doing laundry is just one of the big hurdles I have to mentally battle with myself to do 2 times a week. Every step of the process causes pain, the mental hurdle is the hardest.
Once I get over that ( actually saying to myself " just do it" ) I break up the laundry process into stages, with stretching, and resting included ( sometimes it can take me three days to finish ). Problem solving, planning out how, doing, and eventually accomplishing these tasks starts you mentally feeling better and opens up your world to doing things you never thought possible.
Learn to adapt to and not fearing pain is very important. When you feel severe pain while doing something -stop the activity, take deep breaths ( count to 8 in, hold for 5 then slowly exhale ), try to relax all your muscles and your mind, slowly stretch the area with the pain, let the pain pass through you, while continuing taking deep, slow breaths.
Concentrate on relaxing your whole body, try to visualize a beach with waves lapping at the shore, or a field of flowers, stand up and stretch if necessary. If you go back to doing the same thing again and the pain continues, repeat the above. Sometimes your body is just telling you it's time to do something else, get back to the task later, when the nerves have calmed down.
It's important to remember the nerves are sending FALSE signals because of the RSD/CRPS. The pain is not a warning of a serious injury, although it can stop you in your tracks ( your brain thinks there is a serious injury, setting off the sympathetic responses ). Mentally you have to relax and do the breathing technique mentioned above. Breathing and relaxation techniques can calm the sympathetic nervous system and sometimes stop or ease the nerve pain temporarily.
Take time out when you need to rest, 15 minutes resting can work wonders. Get as much support from other RSD/CRPS people, friends, family and therapists as you can. Sometimes those around us don't understand what's going on especially since we look normal, that's OK. It's your responsibility to educate them to this bizarre disorder (give them a copy of this paper).
TREATMENT: Work closely with your treating Physician. Don't ever let anyone tell you that you just have to live with this, or it's all in your head. If your doctor tells you this- it's time to get another doctor. Different people require different prescriptions or combination of drugs and therapies to treat the symptoms.
A treatment that works for one RSD/CRPS patient may not work for another. It is necessary to try different combinations until the pain and other symptoms are controlled.
Strong narcotic pain medication is not recommended. The long term effects and complications outweighs their long term effectiveness. Strong narcotic pain medications can lower the pain tolerance levels in patients over time. Although opiates are now used to treat chronic pain, they should be used as last resorts, after all other means are tried.
If you are taking strong narcotic medication for the pain, do not let anyone make you feel guilty, or let people treat you like an addict. Just tell them that your endorphins are not normal and the medication aids in keeping the pain controlled, periodically have your doctor review the effectiveness of the medications you are taking and possibly try new combinations.
There are a variety of prescription drugs available to treat the many symptoms of RSD/CRPS. Seratonin in chronic pain patients is depleted very quickly so some form of Seratonin reuptake inhibitor is needed e.g. tricyclic antidepressants.
Drug Therapy:
Local or systemic corticosteroids, Muscle relaxants, Alpha-adrenergic and beta blockers, Analgesics, Anti-inflammatories, Anticonvulsants, Tricyclics and related compounds, Calcium channel blockers ( chronic pain causes the cells to become flooded with calcium and are stuck in the open position, which stops communication between nerve cells ).
Blocks: Nerve blocks, Sympathetic blockade (Stellate Ganglion Block is one type), Intravenous regional blocks.
Good alternative treatments that might be effective are:
biofeedback, pain management specialists, physical therapists, (HBO) hyperbaric enhanced oxygen chambers, acupuncture, botox, massage, visualization therapy, herbal supplements, nutritional therapy, hypnosis, T.E.N.S. and hydrotherapy.
When diagnosed in the first three months nerve blocks may be effective.
It is important to get physical therapy (with a therapist who has knowledge of RSD/CRPS). If nerve blocks or other treatments are not working or making you worse, stop them and try something else. You are responsible for your own health care.
Do not let anyone cast, perform surgery with out getting a second opinion from a RSD/CRPS specialist. Don't suffer through ineffective treatments.
Understanding the Nervous System
The Autonomic nervous system (ANS, which regulates individual organ function and homeostasis, and for the most part is not subject to voluntary control) is divided into two parts these parts are the sympathetic nervous system and the parasympathetic nervous system.
The parasympathetic system is concerned with conservation and restoration of energy, as it causes a reduction in heart rate and blood pressure, and facilitates digestion and absorption of nutrients, and consequently the excretion of waste products. The parasympathetic nervous system is confined to the head and trunk. The parasympathetic nervous system (PNS) calms, relax’s & slows down the body.
When the SNS is activated then for obvious reasons the PNS is inhibited simultaneously. In other words the brain shuts down its primary calming mechanism to force you to remain alert & ready to face the threat.
The sympathetic nervous system is what arouses us in an emergency situation. The sympathetic nerves come from the thoracic vertebrae, or ribs, and the lumbar vertebrae, or small of the back.
The preganglionic nerves of both systems release acetylcholine ( a substance that allows messages to travel from one nerve to another ), but the postganglionic nerve of the sympathetic system releases norepinephrine ( a hormone, released by the adrenal glands, that increases blood pressure by narrowing vessels ).
The response that the sympathetic nervous system invokes is know as the "fight or flight" response. It allows the body to either, stay and fight the threat or to run away. The sympathetic nervous system (SNS) commands release of various hormones in the body like the adrenaline, noradrenaline, glucocorticoids etc. through our various endocrine glands, like the pituitary & adrenal.
When the sympathetic nervous system is stimulated it can cause such things as dilation of the pupils of the eye, the constriction of blood vessels in the head, stomach, and extremities, increase in blood flow in the heart and muscles, the mouth dries up, adrenaline is pumped into the blood stream, air passages expand, the stomach stops working, the liver works hard to produce available sugar for energy, the kidneys slow down (secretion of urine is reduced), the bladder wall relaxes, the skin is stimulated to sweat and sometimes to contract its muscles. All of this is the body's natural defense mechanism.
Stimulus to the sympathetic nervous system can also include environmental factors such as the cold. When damage occurs to the autonomic nervous system it can result in Reflex Sympathetic Dystrophy Syndrome/Chronic Regional Pain Syndrome (RSD/CRPS).
Anyone can get RSD and there is now an estimated seven million people affected in to United States alone. Because the Sympathetic Nervous System effects so many different systems of the body, RSD/CRPS is a complex and little understood disorder. Sympathetic maintained pain is the most common.
When pain occurs in the damaged area, the sympathetic nervous system takes the pain impulses and continues to fire off neurons along major nerves continuously, sometimes for days. The pain can be caused by something so simple as just touch, a breeze, certain movement, or temperature change.
Anatomy of Pain:
Pain signals travel from your peripheral nerves to your spinal cord to your thalamus, a message sorting and switching station in your brain. The thalamus sends two types of messages.
One goes to your cerebral cortex, the thinking part of your brain, which assesses the location and severity of damage. The second is a "stop-pain" message back to the injury site to tell local nonciceptors to stop sending any more pain messages. Once alerted, your brain doesn't need additional warning. But sometimes, this mechanism fails and pain persists.
Meanwhile, your cerebral cortex relays the pain message it received to your brain's limbic center. Your limbic center produces emotions, such as sadness or anger, in response to pain messages ( this is why relaxation and deep breathing is so important to control the emotional pain response ).
Your limbic center can affect the way your cerebral cortex perceives pain messages, and can lessen or intensify your pain. Your cerebral cortex also sends messages to your autonomic nervous system, which controls vital body functions such as breathing, blood flow and pulse rate.
Several types of neurotransmitters (proteins and hormones produced in your brain or nervous system) can increase or decrease pain signals. A hormone--one of the prostaglandins--speeds transmission of pain messages and makes nerve endings more sensitive to pain.
A protein called substance P continuously stimulates nerve endings at the injury site and within your spinal cord, increasing pain messages. Seratonin and norepinephrine (nor-ep-i-NEF-rin) seem to decrease pain by causing nociceptors to release natural pain-relievers called endorphins. (5)
(4) Diagram of pain response in nerves People with impaired sympathetic nervous systems can be susceptible to low blood pressure and fainting. When the sympathetic nervous system becomes over aroused it can result in panic attacks, general anxiety disorders and stress. The sympathetic nervous system also integrates brain and immune function.
What research is being done?
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. 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. (2)
Words Of Hope from a RSD/CRPS survivor:
(Diagnosed in 1994) There is hope, you can survive this disorder!
Take good care of yourself everyday. It's important to rest, and also to get plenty of exercise, gentle stretching and strength training. Follow the guidelines below for diet and exercise tips.
There is always a solution to the everyday problems associated with RSD/CRPS such as: assistive devices for things that are difficult for you to do: opening jars, cutting, holding books, steamer floor mops.
It's OK to wear braces during flare-ups, but it's important not to wear them all the time, only when you need to keep going when the pain is deterring you.
Patients who take responsibility for participating in their own recovery do better than those patients who see themselves as helpless victims of their disorder.
Please ask for help if you need it.
Watch out for Denial:
Depression - Emotional turmoil - Negative thinking - Irritability - Anger - Loss of self esteem
Understand that it's your responsibility to make yourself well. Chronic pain causes so many emotional difficulties, especially making it very hard to even start on the road to recovery.
In taking that first step ( wanting to get well ) you start to take control. If you aren't able to find a positive attitude alone, seek counseling with a support group, pain management clinic, biofeedback, or cognitive therapist.
Your mental attitude every day can effect how you feel.
Unfortunately there are still going to be bad days when you just aren't able mentally or physically to do the things that are positive for your recovery.
That's OK, don't allow yourself to feel guilty or anxious about it, the bad day or days will pass, you get up, brush yourself off, and get going again.
Your Daily Plan
You have the power to reduce your pain - you just need to know how. The pain management skills below will help you. These "Survival Skills" will enable you to get back in control of your life, encourage the body's natural healing processes, and reduce your pain.
All of the methods suggested here can be used in conjunction with conventional medical treatments. When you help yourself, you empower yourself. You feel in control of your life. You may not like it but the pain is here, and part of your life.
Try to accept it, and do the best you can to take good care of your body and mind. You are the one with the power to give yourself wonderful release from pain with the techniques here.
Don't let the days just drift by. Give them shape by planning exercise, rest, pacing activities, social contacts, work and fun.
