Since I'm asked quite often what RSD (Reflex Sympathetic Dystrophy) is, I decided to write a blog about the disease. The information in this blog post is based on the two plus years of research I have done on RSD. I will include a list of all the websites where I have obtained my facts at the end of this blog.
My hopes are to bring more awareness to this intensely painful, crippling, and deforming disease. The reason I want to create more awareness is because currently there is not a cure for RSD and funding is desperately needed for further research.
For those of you who do not know much about me, I was diagnosed with RSD a little over two years ago. It took several months and specialists before they could determine what was wrong with me.
How it began ~
I just woke up one morning with horrific pain in my left foot. I was baffled because I had not done anything to injure that foot the day before. I wrapped it with an ace bandage and suffered as the pain increased daily. After about a week, I just could not take it anymore so I finally called my doctor.
That was in January 2012, and by June 2012, I was in a wheelchair 100% of the time. Within those few months the disease had spread to my right foot as well. I could no longer bear any weight on my feet to walk or stand. After several months of intensely painful physical therapy, in which I cried every time; I slowly began to walk again. They were only baby steps at first but I was walking.
Where I am today ~
It has been two and a half years since the pain began and I only need my wheelchair about 60% of the time. I have learned to manage around my house with only the occasional use of a walker. The only time I use my wheelchair is if we are shopping or out somewhere and a lot of walking is required as I still cannot stay on my feet for long.
They still have not found a treatment that gives me any relief. I have had to force myself to just "deal" with the intense pain the best I can. I decided to stop taking all of the narcotic pain medication because despite the high dosages I was still in constant pain but was unable to function. I also stopped the monthly nerve block injections because the small amount of relief was not worth the damage I was doing to my body by being put under anesthesia every month. I am currently waiting for an appointment with a Neurologist as the neurological symptoms are getting worse.
My feet are now deformed as the bones in my feet and toes have shifted. I am unable to wear shoes, only flip flops, and in order to walk I have to turn my feet so that I am applying the pressure to the outsides of them. As I cannot apply any pressure to the balls of my feet without crying due to the intense pain.
We still don't know how, but I have broken the metatarsal bone in my right foot twice. The only reason I went to the doctor for that was because the pain was in a different place and didn't seem right; that is how intense my everyday pain is. But enough about me. Here is what I have learned...
RSD (Reflex Sympathetic Dystrophy) ~
They can date RSD back to the American Civil War, yet it is still pretty much a medical mystery because no one really knows what causes it. Currently there are several theories in regards to the cause which are:
A dysfunction in the sympathetic nervous system;
An overactive immune system response;
Soft tissue injuries;
RSD is unique because it affects nerves, skin, muscle, blood vessels, and bones all at the same time; unlike any other disease. RSD symptoms either come and go or they are long lasting.
Diagnosing RSD ~
RSD can be difficult to diagnose and requires ruling out other conditions that produce similar symptoms first. A thorough history and a neurological exam are very important. A Physical examination includes observing the skin color and temperature; sweating, and vascular reactivity; overgrown and grooved nails; swollen and stiff joints; muscle weakness and atrophy.
Other conditions are ruled out by MRI studies, a full laboratory panel, EMG/NCV, and a thermogram test.
Symptoms of RSD ~
RSD is a chronic pain condition. The symptoms include; continuous intense pain that gets worse instead of better over time. It is very common for the symptoms to spread beyond the limb initially affected. It most often affects arms, legs, hands, or feet and is accompanied by the following:
Severe limited mobility;
Contractions of muscles and tendons (limbs may be twisted);
Irreversible changes to bone and skin;
Motor disability, with decreased ability to move affected body part;
Muscles in the area may also become weak and stiff. Jerks and twitches may occur in the hands or feet that are affected;
Changes in skin color, temperature, and texture;
Changes in hair and nail growth patterns;
Commonly the pain will have a tingling, burning and electric like feeling;
As well as constant deep aches and sudden jolts of shocking pain.
It is also important to mention that stress triggers activation of the sympathetic nervous system and increases the pain of RSD. So any amount of emotional stress at all can cause the symptoms to worsen.
The Three Stages ~
There are three stages associated with RSD and it is not uncommon for some patients to have symptoms of all three stages at the same time.
Stage One Symptoms ~
Burning pain usually in the hand or foot;
Swelling and tenderness to affected area;
Temperature and color change to the affected area;
Excessive sweating often accompanied by a low-grade fever;
Increased hair and nail growth;
Loss of movement in joints;
and Muscle spasms.
Stage Two Symptoms ~
Extreme sensitivity; light touching, breezes, bed sheets, or air conditioning can cause an extreme amount of pain;
Spreading pain; can spread to other limbs and up to the shoulders or hips;
Hair growth decreases and nails become cracked, brittle, grooved, and spotty;
Bone and joint damage; osteoporosis sets in. Joints thicken and become less mobile;
and Muscle atrophy.
Stage Three Symptoms ~
Severe bone, muscle, and skin damage; the changes in the affected bone, muscle, and skin become irreversible;
Constant pain; the pain becomes merciless;
as well as, Severe mobility limitations; there is muscle atrophy and severely limited mobility of the affected area. Joint movement is greatly impaired and occasionally the limb will be dislodged.
Due to the fact that the cause of RSD is usually a mystery, it often takes some time before an effective treatment can be found. Since there is no cure for RSD, treatments are aimed at relieving painful symptoms in hopes that those who suffer from RSD can resume their normal lives; unfortunately that often is not the case. The following RSD treatments are frequently used:
RSD often has profound psychological effects on those affected and their families. Among other things, psychotherapy often helps those with RSD cope with the stress of the disease and discover ways to deal with it.
Physical Therapy ~
A gradually increasing program of exercise to keep the affected limb moving in hopes to restore some range of motion and function.
Many different classes of medication are used to treat RSD, including topical analgesic, anti-seizure medications, antidepressants, corticosteroids, and opioids. Unfortunately, no single medication or combination of medications has produced consistent long-lasting improvement of RSD symptoms.
Sympathetic Nerve Block ~
One procedure involves IV administration of phentolamine, a drug that blocks sympathetic receptors. Another procedure places an anesthetic next to the spine to directly block the sympathetic nerves.
Intrathecal Drug Pumps ~
This is a device that administers medication directly to the spinal fluid so that they are being delivered directly to pain-signaling targets in the spinal cord at doses far lower than those required when taken by mouth.
Spinal Cord Stimulation ~
This procedure places stimulating electrodes next to the spinal cord providing a pleasant tingling sensation in the painful area.
RSD Prognosis ~
Each person with RSD will have a different prognosis and the components that affect this are unknown. Some patients experience spontaneous remission from symptoms while others have unyielding pain and irreversible changes despite the same treatment. Some doctors believe early treatment helps to limit the effects of RSD, but it has not been supported by evidence from RSD research or clinical studies.
In Closing ~
It is hard for me to understand the fact that RSD was first diagnosed during the Civil War yet it remains a medical mystery. Why is it that there is still so much more research that is needed to understand the causes, how it progresses, the role of early treatment, and most importantly to find a cure for RSD? Those, like myself, who suffer from RSD can only hope educating the public and creating awareness will help in finally finding the answers and the cure we so desperately need.
Resources for the information in this blog came from:
©2014 Lysa Wilds