RSD or CRPS
What does it feel like???

 

excerpts taken from the September 8, 1997 issue of
Awake magazine..
article written by an Awake correspondent in Canada..

What is it?

Reflex Sympathetic Dystrophy...  is a disease caused by injury or trauma to the body.  The injury could be simple (as with a pinprick) or complex (as with surgery).  The disease is characterized by severe continued pain in a localized area, profoundly heightened sensitivity of the area particularly to temperature and light, a color change in the skin, and also hair and nail changes.  The pain is often described as burning or stinging.  This disease is said to be very poorly understood and therefore often left undiagnosed.  It is extremely painful.  Many health professionals claim that irreversible damage can be prevented though.  Early diagnosis is to the patient's advantage.

There is little solid knowledge about this condition.  Every case is different; however, there seems to be three characteristic stages.  First there is usually swelling, pain, stiffness, and discoloration in the limb or affected area.  Sometimes there is also added hair growth.  This beginning stage is roughly 1-3 months long in most cases.  Increased pain and swelling, profuse sweating and more stiffness come about in the second stage.  Often osteoporosis can set in during this stage as well.  In the third and final stage the muscles will atrophy.. tendons contract and the limb withers and becomes useless.  The patient does not necessarily have to have this progression to the third stage, though.  With ongoing treatment including intense physical therapy, counselling, and pain management the normal progression can be halted.  There is no known cure but there have been cases where the disease has gone into spontaneous remission, similar to that possible with cancer patients.

What helps one person may not necessarily help another.  It is a process of trial and error.  There are some things that seem to work better than others in most cases.  The first of these is physical therapy.  The patient MUST use the limb as normally as possible.  In order to decrease the pain enough that they can do this, the attending physician will treat that symptom with medications like aspirin and similar non-steroidal drugs or with a regional nerve block.  It is also important to attack the disease at a psychological level.  The patient must try very hard to stay in a positive frame of mind and to have faith that what they are going through doesn't have to ruin their life.  Laughter and support from family and friends is of utmost importance.  Relaxation and visualization can help the patient stay focused on a positive end result.
 
 

What does RSD feel like??  I would have a very difficult time describing that were it not for the September 8, 1997 article in Awake magazine.  Bob has never been very articulate with explaining feelings and emotions that he himself was experiencing.  When he read this article though, he felt a great sense of relief.  Someone understood him!!  Someone else knew what he was going through!!  Reading this write-up by the Canadian Awake correspondent helped him to be able to put words and pictures to his pain and suffering.  For this, I would like to thank Karen Orf and the Awake magazine from the bottom of my heart for publishing this story.  I would also like to thank the employees of our ISP for bringing this article to my attention.  I hope that I can continue to pass on this information for others who need it.

If RSD had to be characterized by one thing, that thing would be PAIN.  The pain never ends.  It is continuous.. all day and all night.  The limb can swell as much as three times the normal size.  And to use Karen Orf's words..

"It was like being in a house of fire, and I could not escape.  I am not exaggerating!  For me, it was the worst and most persistent pain imaginable.  There were so many types of pain in various degrees.  At times the pain was like a horde of bees stinging me.  Other times, it felt like a vise crushing me and like razor blades cutting into me.  I could not even bear to have my long hair touch my skin -- when it did, it felt as if thorns were sticking into me.  I was desperate for some relief from the agony."  ...  "I wondered how many cuts it would take to get rid of this torture.  I felt like a fox in a trap that seeks relief by gnawing off its trapped limb."

Coping can be a BIG challenge for the patient, but it is possible.  They will likely always have pain.. sometimes more and sometimes less.  It is important to have understanding doctors with positive attitudes.  There must be a semblance of a normal life for the patient.  Even with an abnormal condition, it is possible to lead a productive life.  Family and friends need to give support without pressure.  Sometimes the person will feel very down, but they need to be gently convinced that this can happen through it all.

Here is another excerpt from Karen's story...
 

"I also found, and still do, that soothing music and relaxing breathing exercises help me.  One of my favourite things to do is to lie in a comfortable position with a view of the sky and the ever-changing clouds.  Then I meditate and travel in my mind to pleasant places.  Laughter is always good medicine, as is a positive attitude -- and even more so when you know you have the loving support of family and friends.  It is essential to realize that RSD does not have to defeat you.  Good medical professionals can help you win the battle. ... My beliefs have been a big help.  I am not some specially chosen victim.  God is not to blame.  Pain is one of the misfortunes of life that can befall anyone.  Earnest prayer has been a boon to me."

 

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