Support

When you live with a disease like rsd/crps support can become a major issue.  You can talk until you are blue in the face and unless that person has a chronic pain disease they will never truly understand what you are going through.  Many people will say that they have had pain but generally the pain that they have experienced is acute pain; an altogether different kind of pain than chronic.

A person’s support system usually comprises of a spouse, immediate family, therapists, doctors, nurses, friends; people who know what your hopes and dreams are, know how you live and take care of yourself, know what is going on with your health, know your quirks and the problems you face.  Someone with a chronic illness normally finds that as the years go by their support system dwindles to a few which means that those few shoulder more and more of your support needs until they become overwhelmed and either leave or distance themselves from you. When you are in pain all the time your circle naturally diminishes so you tend to lean more and more on those who are or should be the closest to you.  Unfortunately, rsd/crps has a higher than average divorce rate as well as family estrangement so how do you get the support you need?      

   

The first, and I suppose the most obvious, is Facebook.  There are a variety of pages devoted to t people with rsd/crps.  I personally recommend the following:

• I Have A Chronic Pain Disease and Have to Live With it!

• Dr Patty's Chronic-Intractable Pain & You. A Chronic Pain Advocacy Group

• Pain Sufferers Speak's Support Family

• US PAIN FOUNDATION

• RSD aka Really Sucks Dystrophy

I also recommend the following websites:

• http://www.chronicintractablepainandyou.org

(this site has sub groups rsd crps, lupus, ms, ci, fibro, lymphedema and a men’s only group.  You can video chat with anyone on the site.  It is completely private so feel free to ask any question, talk to someone else with your pain disease or just rant)

• http://rsdsa.org/index2.html

(this is the organizations clinical site; includes clinical guidelines, ongoing research etc…)

• http://www.rsdhope.org/

(one of the original web sites, has excellent information on treatments, meds, additional resources etc…)

And there is my personal favorite:

• http://leslie-livingwithrsdcrps.blogspot.com

There really is no substitute to talking to someone who has this disease. Experiences differ but, we all share a deep and common bond; pain.  Reach out… Talk to someone who has been there…

YOU ARE NOT ALONE!