The Fear of RSD

The other day I started thinking about the pain my step-daughter, MM, has been suffering.  She’s been told she has Fibromyalgia, an often debilitating pain disorder.  While researching more about Reflex Sympathetic Dystrophy, RSD, for this blog, I saw that often people with Fibromyalgia also have RSD.  That’s like a double whammy for someone already in pain.

Watching my friend Laurie, I could cry to think MM might also have RSD.  Okay, I’m not a doctor, and I should not worry when there is nothing that actually proves she has RSD.  So, I will not jump to conclusions.   What I will do is ask MM to talk to her doctor about RSD just to play it safe.

“Play it safe.”  What misleading words.  The only good thing I have found out about learning you have RSD is that if you learn you have it early the treatments are sometimes more successful.  There still is no cure.  It seems more like a cancer that goes into remission.

My research has also revealed that there are only a few ways to know if a person has RSD.  It’s more a combination of symptoms that might mean a person has it.  Ironically, the symptoms are very broad.  As listed in an article by Dr. William F. Shiel, Jr., Medical Author the following symptoms may vary.  You can read the complete article here..

1.     Acute (three to six months): burning, flushing, blanching, sweating, swelling, pain, and tenderness. This stage can show early X-ray changes of patchy bone thinning.

2.     Dystrophic (three to six months): early skin changes of shiny, thickened skin and contracture with persistent pain, but diminished swelling and flushing.

3.     Atrophic (may be long-standing): loss of motion and function of the involved hand or foot with contracture (flexed scarring process), and thinning of the fatty layers under the skin. X-ray can show significant osteoporosis.

An MRI can also tell it the person is showing signs of osteoporosis, thinning bones, another symptom of the disorder. 

RSD is not classed as a disease.  Although I’m calling it a disorder; many people refer to it as the “beast”.  You will see this often if reading forums on the subject.  I believe if anyone has been diagnosed with, or suspects they may have RSD, these sites may be helpful.  There is a benefit to knowing you are not alone.  As well as understanding, there are suggestions of what has worked for others and information on new treatments.  One such forum is found here.

In my final paragraph today I want to reiterate the previous paragraph.  No matter how understanding a family may be when learning their loved one has RSD, like so many other invisible diseases, there may be times even family and the best of friends may not fully understand the pain the sufferer is going through.  After all, in the beginning they look fine.   That is a common complaint among people with RSD.  People think they are lazy or just trying to get attention.  That is not the case.  I will touch on this next time.