What is RSDS really?

Please don't despair!  You can learn to get your life back under control but it does take drastic measures. 
You may go to the doctor because you are having an unusual amount of pain for the injury, surgery, trip, etc that you've experienced.  You are told you have RSDS. 

Do you realize that having RSDS is not just the pain in your limb?  It's not as easy as simple addition of one pain drug to help control the pain.  It's fine tuning, using drugs, different drugs for the different things going on in your body. 


Having RSD means that your body is now out of tune...anything you do, everything you experience, the weather; barometric pressure changes, wind, cold, heat, stress, vibration (cars, planes, music, ) all have an effect on you and your pain and the other things going on in your body. Even eating takes a toll on your body!  If I eat too much and my digestive tract has to work too hard, I can feel as if I have run a marathon! I can get flushed just with the effort of going to the bathroom! 

Your mind is affected:  insomnia, depression, you can't deal with commotion, with groups of people. 

Motion Sickness!
I couldn't carry on a three way conversation and still have to be careful! 
I would feel like I was getting Motion Sickness!! Looking back and forth between two people!  Looking back and forth going down the grocery aisle!  Looking both sides of the road when driving!!!
LIght!  Our bodies have to adjust to LIGHT we are experiencing, so that can make our pain worse!  I was in a  vibrating car on a swaying bridge in bright sunlight with my husband and daughter talking, the radio on.  I had to cover my head with a blanket so the sun wasn't an issue, have them stop talking, turn the radio off, all so I could also deal with the swaying of the bridge and the vibrating of the car!   You see, all these things were adding to the stress on my body and was making me feel worse and worse.  But, you see, the effect of these on my body were not limited to that time and place.  I also knew that the effect would stay with me for a couple days after we got to our destination!


Take time to just think about the effects of everything in your life on your body.

The weather. FALL is an incredibly rough time for us because of the pressure changes, the wind blowing, and storms. There are ups and downs all the time.

Insomnia. It is not just because you are in pain...the RSDS actually causes the insomnia.  You need to figure out what helps you to sleep. 

I read some books that are fictional, easy reads just to get my mind off the pain. 
I used to have a movie I enjoyed that I would watch every night. I knew it every line, every scene, and before long, it would help me fall asleep easier. BUT...never before say 1 or 2 in the morning. We have insomnia. Period. It's part of the RSD.  You might try sleep aides. But, I found they didn't help much at all.

You have RSD. Yes, it's pain. But it's so much more than just the pain. You can no longer live the way you used to live.

When first inflicted with RSD, give up all extra activities, and yes, I mean everything you don't need to be doing. No cookie making at Christmas. No concerts. No shopping. No shoveling. No cooking even. I gave up all my crafts, all my activities.  Do nothing but eating, sleeping, dressing, maybe going to Aqua Therapy, hot baths. etc. 
 
You probably all know that once in pain, it's harder to get rid of the pain.  So, you need to control the things that make the pain worse. The less you are doing that causes pain, the easier it is for the meds to get under the pain and help you.  For me, the nerve blocks helped stop the pain long enough for the meds to help 'CONTROL' your pain.  You may never be pain free, you need to learn to live WITH the pain.  I do have days when I don't feel much pain at all.  
 
 Once you get the pain under control, you can toy with what else you can add back to your life.  Its sorta like learning to walk on a balance beam that is only about six inches off the ground, moving it up higher and higher as you get better walking your fine line.  THEN, you may make the beam narrower and narrower until you are walking the FINE LINE.
 
That all said...my fine line broke last week!!  I have to take time fixing my fine line once again.