When a Hug Isn’t What It’s Meant to Be

The other day I patted my friend, Laurie on the shoulder, and offered a compliment about the work she does as Executive Director of the Non-Profit where I work.   As soon as I did it, I remembered my action was likely causing her more distress, than the pleasure it was meant to provide. 

So many times I’ve wanted to give her a hug of comfort, especially when she is going through her most difficult times.  Those times I am more likely to remember when given to Laurie, who has about Reflex Sympathetic Dystrophy, RSD, a hug isn’t what it’s meant to be.  In an attempt to offer comfort, welcome or joy of some kind, instead, a hug can cause excruciating pain to someone with RSD.

Though I’ve written about Laurie before, I’ve taken the time to research more about her disorder.  I can’t say I will offer more medical information, as I thought I might when I started this blog.  To be honest, everything is so technical, that I find myself at a loss how to explain what I have read.

Perhaps the best thing I can do is continue to tell more personal stories.  They are easy to find.  One only has to go to the RSD organization's site and there is a world of valuable information.  If you suspect you have, or have been diagnosed with RSD, I strongly suggest you go to this site, if you haven’t already.

Once on the site, there are several options that will lead you to some excellent posts on You Tube.  No words I write can tell the story better than these short video clips.  If they do not tug on your emotions, you are a stronger person than me.  Then again, maybe you just don’t know someone who has RSD.

I know Laurie, and to me she is the face of RSD, though I know there are many other faces.  I’d like to hear more about their stories.  Until I do, I will tell you more about this remarkable woman’s battle.

For Laurie each day is a struggle for concentration.  Imagine trying to focus on anything other than your pain.  Add to it, medications you might be taking to dim your pain, also dimming your ability to keep your mind on your work.  Top it off with exhaustion from lack of sleep.  It is said that the average RSD sufferer gets only 2 hours of sleep a night.

If I didn’t see it for myself, I would not believe Laurie’s ability to maintain her ability to do her job. Not only that, she is outstanding in her work.  Those of us who work under her, often wonder how she does it all.

Laurie also serves as a mentor to me.  I have recently been put on medication that impacts negatively on my concentration, and Laurie has coached me on staying focused.  I’m still a novice while she is a pro.  Yet, it is a sad title to carry when you consider all she has to do to remain so keen.

I will continue to learn more about the people who have, or who have been suspected to have RSD, and bring you their stories.  Until then, I will continue to do research and to observe my friend.  By writing about it, I hope I can help someone who suspects they have RSD, or people who know someone with the disorder better understand.

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.