how much do you know about RSD?
REFLEX SYMPATHETIC DYSTROPHY
also known as CRPS, COMPLEX REGIONAL PAIN SYNDROME
Reflex Sympathetic Dystrophy Syndrome
Reflex sympathetic dystrophy syndrome (RSDS), is a rare disorder of the sympathetic nervous system that is characterized by a group of symptoms including chronic, severe pain (typically burning pain), tenderness, and swelling of an extremity (arms, legs, hands, or feet) associated with varying degrees of sweating, warmth and/or coolness, flushing, discoloration often blotchy, purple, pale or red, and shiny skin, changes in nail and hair growth, and motor disability, with decreased ability to move affected body part. RSD is often referred to and diagnosed as:
- Causalgia Syndrome (Major)
- Reflex Neurovascular Dystrophy
- Sudeck’s Atrophy
- Complex Regional Pain Syndrome
WHAT IS REFLEX SYMPATHETIC DYSTROPHY?
The sympathetic nervous system is part of the autonomic nervous system which regulates involuntary functions of the body i.e., increasing heart rate, constricting blood vessels, and increasing blood pressure. RSD is triggered by a trauma to the body, usually an injury to an arm or a leg. It is estimated that in 65% of cases, soft tissue injury such as a sprained ankle has progressed into RSD and fractures, surgeries, injections, infections, paralysis and repetitive strain injuries can also precipitate RSD. It has also been found that 1/3 of patients with RSD occurs without any apparent injury or associated trigger. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with reflex sympathetic dystrophy syndrome.
- degenerative arthritis of the neck
- shoulder problems
- heart disease
- brain diseases
- thyroid disorders
- carpal tunnel
- certain medications
Typically RSD starts with a burning pain in the limbs: arm, finger(s), palm of the hand(s), shoulders, or one (localized) or both legs. The affected area becomes swollen which is referred to as edema, and severely inflamed. The joints can become stiff, limiting movement and causing muscle atrophy and further pain and dysfunction. The affected area becomes sensitive to touch, sensitive to hot and cold temperatures, and can become so sensitive, that anything touching the affected area. In fact RSD is so painful it is the number one most painful disease; topping even childbirth, amputation, and much more. This disease is associated with constant unrelenting pain and it can spread to the whole or other limbs and all parts of the body. The affected area may perspire excessively and can feel extremely warm to the touch or the affected area can perspire and feel very cold to the touch.
To date, it is not clear what causes RSD, but it is believed that it may be associated with injury to the nerves, trauma, surgery, atherosclerotic cardiovascular disease, infection, or radiation therapy, and spinal injuries. RSD is a progressive disease causing constant severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, discoloration of the skin, muscle spasms, and extreme sensitivity to touch; even a gentle breeze, a vibration, or a gentle touch can result in pain. People between the ages of forty and sixty are at most risk and women are three time more liker than men to develop RSD. If this disease is left untreated, those people will endure a lifetime of severe, pain, sleep derivation, disability, unemployment, financial ruin, isolation by friends and family, and depression that may lead suicidal ideation.
A PHANTOM SYNDROME
“Perhaps only people who endure relentless pain can truly understand the significant impact that it has on the body, mind and sole”.
The first time RSD/CRPS was document was during the American Civil War in 1861. A young physician named Silas Weir Mitchell who treated soldiers with gunshot wounds and other injuries noticed that many soldiers that were treated described a burning pain which persisted long after the bullets were removed from their bodies and he called this pain “causalgia” which means burning pain. He started observing distinctive symptoms of painful swelling of the joints (anklyosis) an abnormal adhesion and rigidity of the bones of the joints, edema, damaged skin tissue that became hard and discolored, and red-hot pain. Dr. Silas Weir Mitchell noted that the symptoms of this pain were all characteristic of injuries to the nerves and that even though the symptoms and pain’s location varied from patient to patient but the sites were typically in the hands, feet, arms and legs. Following the American Civil War, RSD was documented by military surgeon, Rene Leriche MD in 1879 while he was treating WWI soldiers who suffered nerve damage. In 1890 Leriche, a neurosurgeon reported a disease with symptoms of “non-pitting edema, changes in color, changes in skin temperature, tenderness of the skin and pain” which he called algodystrophie and thought it was caused by an increase of activity in the sympathetic nervous system. In 1900, Sudeck, a surgeon from Hamburg Germany reported cases of acute bone atrophy and atrophy due to inactivity accompanied by patchy discolored skin on hands, feet and forearms, which was thought to an exaggerated inflammatory response after an injury to the nerves. Yet another doctor Steinbrocker in 1947 started treating patients with oral corticosteriods as treatment for what he referred to as “shoulder-hand syndrome”.
STAGES OF RSD
Consequently there is now a stage four for RSD, but it is very rare for patients to advance to this stage. In this stage RSD is resistant to many forms of treatment and the inner organs are starting to be involved. WARNING: do not let any doctor suggest amputation of affected limbs (this is still being done) it is ineffective and extremely destructive; will exacerbate the RSDS and increase the spread rate, and it is physically and mentally dangerous and will cause irreparable harm and damage.
WHAT THEY DO NOT TELL YOU ABOUT RSDS
- RSD is often misdiagnosed in the first two stages, many people have symptoms from multiple stages making a definitive diagnosis extremely difficult.
- Because of the many symptoms or lack of some symptoms, it is difficult to determine what stage you are in.
- RSD evolves constantly (daily, weekly, monthly, yearly) symptom depend on how your body is reacting to the weather, stress, current medication, time of day, your living conditions, the time of year, environment, sleeping patterns, reaction to treatment, stage of your disease, state of mind, etc. All these combined factors make it even more difficult for your doctor to correctly diagnose and treat RSD.
- Patients are responsible for educating their doctors about their RSD symptoms and many patients have a difficult time describing this devastating disease.
- Even though there are defined stages, stage 1 and stage 2 are so brief, sometimes less than a few months total, so very few patients are diagnosed and doctors fail to recognize it within those first few months.
- It has been found that placing a patient into a clearly defined stage with a highly fluid disease like RSD just doesn’t make medical sense and that a better benchmark of where your RSD is, may be mapping your percentages of SMP (sympathetically mediated pain) and IMP (independently mediated pain) over a period of months.
- It becomes more difficult to treat RSD after 12 to 18 months, sympathetic treatments such as nerve blocks are less likely to have any effects at all and can even produce negative effects.
- Many doctors believe RSD has a burnout rate and many of these patients do not get the proper treatment so before their RSD is diagnosed, they are already entering the acute stage and the beginning of the chronic stage.
- RSD can be put into remission if caught early, but there is no cure and many patients report that it has resurfaced from a new injury in a new place or the same place.
TREATMENT OF RSD
There are many different types of treatment for RSD and many of them are old, outdated, or just simply incorrect so it is crucial that a patient understands all the facts associated with their condition and treatment methods. It is also important to understand that while one treatment may work for some people, it may not work for the majority. IT MUST BE CAUGHT EARLY and it must be treated correctly to stand a much greater chance of being put into remission. With a combination of diet, exercise, physical therapy, and medication, many physician say that these combined methods hold the key to treating this disease for the majority of patients.
- Fentanyl Patch
- Extended release medications
- Prescription drugs (pain killers)
- Low Dose Naltrexone
- Lumbar Sympathetic Block
- Cervical Nerve Block
- Epidural Nerve Block
- Occipital Nerve Blok
- Stellate Ganglion Nerve Block
- Low-Dose Ketamine influsion
- Ketamine repeated infusions done over a period of days, weeks, and months.
- High-Dose Ketamine infusion (medically-induced coma) not allowed in the United States, being done in Germany, Monterey, and Mexico.
INTRATHECAL DRUG PUMPS
- Pumps and implanted catheters are used to send pain-relieving medication into the spinal fluid.
SPINAL CORD STIMULATION
- technique, in which electrodes are placed next to the spinal cord, offers relief for many people with the condition.
- Gentle, guided exercising of the affected limbs may help decrease pain and improve range of motion and strength.
- Transcutaneous electrical nerve stimulation (TENS)
- Topical analgesics (capsaicin cream (Capsin, Capsagel, Zostrix) or lidocaine patches (Lidoderm, others).
- Heat and Cold (most people with RSD have a hard time tolerating).
- Individual therapy, group therapy, and relaxation or meditation therapy.
Nutritional therapy (Four F’s diet):
- Fresh Fruit – not canned.
- Fresh vegetables – Olive oil is the best cooking oil.
- Fish – baked or broiled. Use fresh lemon juice for flavor. Avoid the use of margarine and butter.
- Fowl – skinned! Not fried – baked, roasted or grilled is fine.Fowl – skinned! Not fried – baked, roasted or grilled is fine.
It is suggested that people with RSD stay clear of alcohol beverages, caffeinated beverages including coffee, fatty foods, fried foods, processed food, sugar, nondairy cream substitutes, foods with Enriched white flour (bleached flour), chips, and all high sodium foods. Lean red meats are allowed in moderation.
There are certain foods that can make your pain worse so it is a good idea to talk to a nutritionist about foods that have a direct impact on pain.
RSD FROM A PERSONAL PERSPECTIVE
Reflex Sympathetic Distrophy is a life altering disease. The impact that this disease has on a person’s life can not be clearly spelled out because everyone’s situation, symptoms, progression, remission, escalation, medical experiences, pain threshold, treatments, lifestyle, support system, etc., are all different. I was diagnosed with RSD in 1998, three years after my RSD symptoms began, but because this disease was very rare and there was not much known about it, my treatment was jeopardized until I had reached stage 3. Too complicate things further, I was sent to 27 different doctors and neurologists during this 3 year period and was diagnosed with numerous different things including, Huntington’s disease, muscular dystrophy, degenerative disease, Parkinson’s, Multiple Scerosis, Lyme disease, and Lou Gehrig’s disease. I was on a roller coaster of medical tests such as X-Rays, C-scans, MRI’s, Myelogram Imaging, Nerve conduction tests (EMG), and Spinal taps, followed by a vast amount of different treatments and medications. Some proving to be very dangerous because I was being prescribed medication for something I did not have. One doctor even talked about amputating my left leg. By the time my doctors figured out what I had, I was in a wheel chair, my hair was falling out from the stress, and I had started to grind my teeth so bad from the pain, the RSD had set into my jaw. I developed severe panic attacks which escalated into agoraphobia, and insomnia.
One year later, I decided to take charge of my life. I pushed through the pain and exercised my legs until I was out of the wheel chair, stopped taking all medications, changed my diet, entered myself into physical therapy (with a specialist that worked with RSD patients), and went to a counselor to teach me meditation and panic attack control. I am and never have been pain free since 1995, but today I am okay. I am still walking (sometimes with a cane when I need it), and I am aware of when my RSD is going to escalate (seasons) and what I have to do to maintain some kind of pain control. I have refused all pain medications (not recommended for everyone) but for me, it was just better to get used to the pain and push through it. I watch what I eat, walk, exercise, and I even bought a bike last year to build the muscle back up in my legs. There are a lot of things that I can not do, but I am grateful for the things I can do.
“Chronic burning pain becomes part of your everyday existence—its always there—controlling what you do. It is a disease that no one can see—invisible—exhausting—but hidden very well. Chronic pain forces you to become stronger—and makes you realize that this is now your new normal. The pain travels through your body—like embers burning in a fireplace—hoping for them to fizzle out—but wait—another log was thrown on the fire….”
I hope this post has brought some aware about RSD and its devastating effects. If you would like to leave a comment I would love to hear from you. If you have RSD or know a loved one who is dealing with this disease, please leave a comment about your experiences.