What is RSD - Reflex Sympathetic Dystrophy?

Hi! Today I want to try to get some info out to you all about what RSD/CRPS is, the symptoms, how it affects people with it, what treatments there are and how you can help. I am using information from other sites, along with my personal knowledge of this disease. I will post links at the bottom so you can get information for yourself or pass it along. One thing in life I have learned, its never too late to learn and even if it doesnt concern you, it may concern someone you know. There is no cure for RSD/CRPS.

What is RSD?

RSD is Reflex Sympathetic Dystrophy. It is also known as RSDS - Reflex Sympathetic Dystrophy Syndrome, CRPS - Complex Regional Pain Syndrome, Shoulder Hand Syndrome, Causalgia and Sudeck's Atrophy. 

CRPS (RSD) is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index.

The National Institute of Neurological Disorders and Stroke (NINDS) says that RSD is "a chronic pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems." 

MedicineNet, states that RSD involves "irritation and abnormal excitation of nervous tissue, leading to abnormal impulses along nerves that affect blood vessels and skin."

Complex regional pain syndrome (CRPS) is a chronic pain condition.The key symptom of CRPS is continuous, intense pain out of proportion to the severity of the injury, which gets worse rather than better over time. CRPS most often affects one of the arms, legs, hands, or feet.  Often the pain spreads to include the entire arm or leg.  Typical features include dramatic changes in the color and temperature of the skin over the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling.  Doctors aren’t sure what causes CRPS.  In some cases the sympathetic nervous system plays an important role in sustaining the pain.  Another theory is that CRPS is caused by a triggering of the immune response, which leads to the characteristic inflammatory symptoms of redness, warmth, and swelling in the affected area.

What causes reflex sympathetic dystrophy (RSD)?

The exact mechanism of how RSD develops is poorly understood. The theories include irritation and abnormal excitation of nervous tissue, leading to abnormal impulses along nerves that affect blood vessels and skin. The involuntary nervous system, peripheral nerves, and brain seem to be involved. A variety of things can trigger RSD such as, an injury or trauma, surgery, diabetes, thyroid disorders, heart disease, degenerative arthritis of the neck, stroke or other brain diseases, nerve irritation by entrapment like carpal tunnel syndrome, shingles, shoulder problems, breast cancer, drugs for tuberculosis and barbiturates, 

What are the symptoms of RSD?

RSD usually affects one of the extremities (arms, legs, hands, or feet). The primary symptom of RSD is intense, continuous pain. According to NINDS, the list of symptoms includes burning pain, increased skin sensitivity, skin temperature changes (warmer or cooler than opposing extremity), skin color changes (blotchy, purple, pale, red), skin texture changes (shiny, thin, sweaty), changes in nail and hair growth patterns, stiffness and swelling in affected joints and decreased ability to move affected extremity.

Pain can spread to a wider area (i.e. from finger to entire arm) and can spread to the opposite extremity (i.e. from left arm to right arm). Emotional stress can cause symptoms to worsen.

Some experts suggest there are three stages of RSD, during which progressive changes occur in the skin, muscles, joints, ligaments, and bones of the affected area. The progression has not been confirmed by clinical studies though.

Stages Of RSD

Stage 1

lasts 1 to 3 months
severe, burning pain
muscle spasm
joint stiffness
rapid hair growth
skin color and temperature changes

Stage 2

lasts from 3 to 6 months
pain which becomes more intense
swelling
decreased hair growth
nails which are cracked, brittle, grooved, spotty
softened bones
stiff joints
weak muscle tone

Stage 3

irreversible changes to skin and bone
pain is continuous
muscle atrophy
severe limited mobility
contractions of muscles and tendons (limbs may be twisted)

How is RSD diagnosed?

A patient's clinical history (signs and symptoms) are the major factor in diagnosing RSD. The diagnosis is made difficult because many of the symptoms overlap with other conditions.
There is no specific blood test or other diagnostic test for RSD. X-rays can show thinning of bones. 

Nuclear bone scans can show characteristic uptake patterns which help diagnose RSD. 

A sympathetic block may be done also helping in diagnosis.

How do you treat RSD?

Because there is no cure for CRPS, treatment is aimed at relieving painful symptoms.  Doctors may prescribe topical analgesics, antidepressants, corticosteroids, and opioids to relieve pain.  However, no single drug or combination of drugs has produced consistent long-lasting improvement in symptoms.  Other treatments may include physical therapy, psychotherapy to relieve stress, anxiety and depression, sympathetic nerve block, spinal cord stimulation, and intrathecal drug pumps to deliver opioids and local anesthetic agents via the spinal cord.

The prognosis (outlook) and response to treatment in patients with RSD is unpredictable.

How can I Help?

You can help in many ways. People who have RSD usually deal with depression and anxiety, they are self conscious and may withdraw from friends and family, Because of the extreme pain they deal with, it is often hard for them to get out of their home. You can send a card, send a letter, stop in to visit with them, give them words of encouragement. Never ever tell someone with RSD that its in their head, to fight through the pain it will go away, dont tell them that it cant be as bad as they are saying, its usually worse. Be kind and patient. Dont expect them to go to you, go to them. They often cant move around much without causing a flare in pain. 20 minutes out of your day to just visit with someone you care about is not that long and can benefit more than you realize!

Im hoping that some of you will have questions, please ask away!
I am also posting a from a section of questions that people had asked at American RSD Hope.



I SEEM TO BE HAVING PROBLEMS WITH MY MEMORY. IS THAT PART OF CRPS/RSDS OR IS IT BECAUSE OF THE MEDICATIONS? 

YES YES YES! You aren't going crazy or losing your mind. CRPS/RSDS causes short-term memory problems. This is due to problems related to the Limbic system of the brain. In addition to memory problems, changes in the limbic system can also cause depression, insomnia and other issues.

DOES RSD/CRPS SPREAD? 

YES! YES! YES! CRPS/RSDS spreads to some degree in 70% or more of all cases; depending on the type of original injury, the treatments used, existing medical history, subsequent injuries, etc. It seems to follow very specific paths in most patients; hand to arm; foot to leg. But it can also go from one side to the other, left foot to right foot, right hand to left hand, etc. It can also spread up the arm from the hand it what is commonly known as shoulder/hand syndrome. In many cases where a spinal injury is involved it can spread full body but it can happen in other cases as well. CRPS can occur in almost any part of the body and it seems it can spread to almost any part of the body as well, from the many cases that are constantly being presented. 

Just a note - For us at American RSDHope, we don't believe there is a body area we have not been informed of a case of CRPS being affected by or having spread to. In other words, in our two decades of talking to CRPS patients we have encountered CRPS having been in or spread to pretty much every part of a persons body. 

ARE DENTAL PROBLEMS PART OF THIS DISEASE?

The short answer is yes. The long answer is that many CRPS patients report problems such as; dry mouth (sometimes related to Sjogren's disease) which can lead to receding gums, cavities, and other dental issues; extreme sensitivity to cold/hot temperatures in food/drink; difficulties with dental procedures such as having cavities filled or teeth cleaned, etc. Most CRPS patients report having to have teeth pulled rather than have root canals performed due to issues with the nerves in the mouth/jaw.

IS EXCESSIVE SWEATING PART OF THE DISEASE? 

Yes. Actually some patients can have excessive sweating while others have no sweating. Check out the SYMPTOMS section. The same goes for nail and hair growth. There are times when a CRPS patient may experience no nail or brittle nail/hair growth and other times when their hair/nails may just seem to grow like crazy. These periods can last for weeks, months, or even years and vary patient to patient

PEOPLE WHO I USED TO CALL MY FRIENDS, NO LONGER SEEM TO BE THERE FOR ME, NO LONGER CALL, NO LONGER COME BY. WHY IS THAT? 

Many patients report this happens to them. Chronic illness is difficult enough for a patient to deal with, someone who has most of the facts and has a fairly good understanding of what is happening and what the disease or illness is all about. Loved ones and friends don't usually have that luxury and/or don't take the time to learn. Our behavior changes we don't do the things we used to. We tend to be more introspective, we shy away from loud places, many changes take place for us. We are no longer able to work and our lives are so changes that to our family and friends we are a different person on the outside while on the inside we are screaming, "It's still me!" The best ones will take the time to find out what is happening in your life and how they can help you, they will stick around. The others? Well, you can't force someone to do the right thing.

Yes, we have an article that might help you here as well and we are working on Part two right now. The article is called "To The Friends and Families of CRPS/RSD Patients" but it could probably be sent to the loved one of any chronic pain patient. 

WILL I HAVE THIS DISEASE FOR THE REST OF MY LIFE? 

This is a difficult question to answer and it is different for all people. CRPS is a disease where there are no absolutes, there are always exceptions to the rule. Many patients end up dealing with the pain and disability of CRPS for a lifetime, but there are also patients who go into remission; although they appear to be in the minority. Whether it be from being treated early with nerve blocks or some other type of treatment the key is catching and treating the disease as early as possible, typically within the first 6 to 12 months, in order to have the best chance of sending the disease into remission. More and more is being learned every year and there is more Hope as each year goes by.

DOES CRPS GO INTO REMISSION? 

REMISSION AND CRPS

Will your CRPS go into remission? Unfortunately, not very likely but it depends on the age of the patient and the type of injury sustained. The incidence of remission is extremely low. It is highest for teens, especially if they are diagnosed within 1 to 12 months and treated aggressively. For adults, the need for quick diagnosis is even more urgent; within the first 3 to 6 months is imperative and that must be followed with aggresive therapy. The type of therapy depends on the type of CRPS you are diagnosed with. Newer treatments, especially the ketamine infusion in-hospital 5 day Awake technique, are proving successful in more than half of the patients treated and many are experiencing complete pain relief for up to 1, 2 years or more. As the study of CRPS continues and more is learned the hope is that more patients will be able to experience longer periods of pain relief. But again, the relief is temporary and not a cure. 

IS IT CONSIDERED REMISSION IF I AM NOT IN PAIN BUT STILL TAKE PAIN MEDICATION?

This is a question we get asked quite often. Patients get their pain under control with the help of some of the wonderful physicians and therapists out there through the use of medications and physical therapy; usually a combination of aqua therapy and cardio, such as treadmill or stationary bike. The less pain they are in the more they can do physically, the better mood they are in emotionally, the better they sleep, sometimes leading to the need for even less pain medication; it is all a great healing cycle. For some, their pain goes away completely but they still need the medication to keep it away. Does this mean true remission then? The answer could be debated back and forth forever but the bottom line is, does it matter? If you have no pain and have improved your quality of life enjoy it! Take extra precautions, absolutely. Someone who has had CRPS once is more likely to have a recurrence than someone who has never had it, but don't let that thought rule your life.

DOES CRPS BURN ITSELF OUT? 

NO. Absolutely not. The first time I heard this (Keith, from American RSDHope) was when I was finally diagnosed with what was then called RSDS. The Dr diagnosed me out of a book. She said I "had this disease called Reflex Sympathetic Dystrophy Syndrome", that "it would burn itself out in two years at the most", and that until then" I would most likely get worse not better". At the time I was unable to work, barely able to walk and ended up in a wheelchair within a few months. It is now 19+ years later and I am still waiting for it toburn itself out.

We have had quite a number of patients tell us similar stories. Unfortunately it does no such thing and there is no such diagnostic code for this, or have I ever talked to a Doctor who said , "Oh yeah this happens all the time."


Thank you to all the sites I used to put this together! 

About.com

MedicineNet.com

National Institute of Neurological Disorders and Stroke (NINDS)

RSDS.org

New York State Department of Health

RSDHope.org