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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Dear Cooper,

Lordy mercy, do I know where you are coming from regarding all the little diseases that just make your life miserable but won't kill you. It sucks. I have not read past your post here so I might put in another 2 cents after reading what others wrote.

You are right on the money about no sleep making your pain worse. Have you tried Trazodone? That is non-narcotic and non-addicting so I've been told. It amazes me how fricking insensitive our families and friends can be about the medication that we have to take for this RSD. Hell, yes, we are addicted. But what is our alternative? Do we sit and suffer in silence, thereby allowing resentment to build up against those we love? My RSD pain, cannot speak for anyone else, is sometimes so horrible that I have dropped to my knees and pleaded with God to just let me die, TO PLEASE JUST LET ME DIE!!! What I did was get all the information that I could get my hands on to distribute to those that professed to love me so they could understand what I am going thru on a daily basis, like finishing this post to you because I CANNOT STAND THE PAIN OF JUST PICKING UP MY LEFT ARM TO TYPE. Sorry, I was about to go on a Dennis Miller rant. I was so lucky to find a doc in a neighboring state that understands RSD and is not shy about trying all different kinds of pain meds until he can find one or a combination of drugs that works for you. I may not supposed to say this, but the medicine you are taking sucks big time!! It is laughable to me that that is all you have been given. It sounds like what I went thru before I was finally diagnosed. I saw so many different, uncaring doctors that thought all I wanted to do was get meds to get high. Had I not have had to keep desperately searching for a doctor to just tell me why I was in so much pain (about 4 years), I've read that the RSD could have been put into remission. For each of those docs, and there were close to a dozen, I wish they each could live in my skin for 24 hours. They would be singing a whole different tune. As I said, I travel close to 3 hours to another state to see a doctor who is kind, keeps up with the latest treatments, etc. for RSD. He has never made me guilty a day. I take my meds exactly as prescribed. They don't completely take the pain away. But with no medication, I have zero quality of life.

So, this is what we've been dealt, and we have to stand up and say or sometimes shout "I'm in horrible pain!! PLEASE HELP ME!!!" We must be our own advocates. Read everything you can in every place that you can find about this disease. BE INFORMED!! STAY INFORMED!! Sitting back and being the dutiful, sweet little old lady got me NOWHERE. I apologize for being so fired up about this disease, but I've suffered a long fricking time. I pray that all doctors would just familiarize themselves about RSD. So many people could be spared so much needless pain because of simple ignorance on the part of doctors.

I've noticed that if I get stressed out, my pain shoots to a 10 in a nano-second. Been having some success with deep breathing exercises and meditation. I try to keep my distance from quarrelsome people or chatter boxes. That helps, too. It is just self preservation for me.

Good luck and you hang in there. Read these posts. Take what you want and leave the rest.

Sansy





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