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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

I was so thrilled to see your message this morning or now yesterday morning. I sat right down to respond. It took me a long time to get everything down but when I tried to find a spell check, my response to you was just gone. I just cried and cried because it took so long to do it. My memory is so bad that I hope I can remember it all. I'm so mortified of the medical and dental people that we've had to deal with where we live. I was trying to figure how long it took for a diagnosis. I think it was almost six years. I was in so much pain for those years, and nobody believed me. It seemed in every case they treated me like I was some drug seeker off the streets. I'm 62 years old and married to the same great guy for 30 of those years. We had to start sleeping in separate bedrooms so that he could get his sleep. So my nights were filled with crying and lots and lots of burning, unending torture. Child birth was better. Before I finally found a doctor in another state that at least tries to keep me as comfortable as he can, having emphysema makes it hard to find something that works and I can still breathe. He's prescribed things that have helped for awhile, but they stop working or I can't breathe.

The big problem now is this woman dentist and what she and her cohort oral surgeon have done to me. She did a root canal back in May or June that kept me in her chair 4 1/2 hours!! My hands are cramping up so bad that I havde to stop typing and try to rub the cramps out. I hope my letter is still here when i come back. YEA! You are still here, and I know I can get this finished with 2 fingers. . .eventually. Been a secretary all of my life, and the RSD has made me pretty useless for that work anymore. It brings me down sometimes if I think too hard about that. I once tested 97 words a minute with 3 errors. Glad my typing teacher can't see me now. I still believe that old saying about life giving you lemons to make lemonade. Only thing is I love it, but it gives me such heartburn that I can't drink it. Well, dang it, things have gotta go up from here.

We have seen so many different kinds of docs because we had no idea why there was this hideous pain. Not one DOCTOR OR NURSE that I asked about RSD had ever heard about it. I was so shocked. In just about every case when I asked the question do they know about RSD, that person would cock there head to one side like an inquisitive puppy and usually a shrug of the shoulders. I've just learned to do my own research, and I do it on a daily basis. There is so much info!

Anyway, I go to this very pretty, very nice and pleasant female dentist. The first thing I needed done was to take out a broken, rotting molar. She ignored that and immediately started with the first root canal. I'm bedridden most of the time. For me that is a recliner because I breathe better sleeping in the chair. She had a plan all worked out for 2 more root canals, some crowns. She made up an estimate for over $8,000 for a bridge. She never did any of the small cavities and left the other one just falling apart and rotting. I started doing what research my body would allow and found some very disturbing news about dentists and RSD patients. At 4 o'clock on the morning of the second and 3rd root canal, I found what I needed to know. Dear God I was so grateful. A woman had had a root canal. She was then bedridden for 2 years! She started looking for answers too and made the decision to get it pulled out. The dentist did not want to do it because he said there was nothing wrong with it. She insisted; it was extracted! Glory, because in one week after extraction, she was outside doing yardwork. Isn't that amazing? I asked for approval for her oral surgeon guy to pull it as well as the two she wanted to do the root canals on. She flatly refused. She said if you do that, I won't be able to make you a bridge. You'll have to have a plate. To stop this pain, they could pull 'em all, and I'll be grateful to gum some mashed potatoes. The oral surgeon pulled 2 or 3 teeth that could not be saved, but he punctured a big hole in my sinuses. My internist sent me to an Eye, Ears, Throat doctor who was so very nice. He was kinda shocked when he looked in there. This is when that pus was really coming out. He got me on antibiotics, set me up with another oral surgeon who was going to put me in the hospital to do it because of the emphysema. The good thing is he was gonna pull the root canal the other dentist did. Before my appointment I gathered some pertinent information about how RSD patients need to be handled differently that normal folks. I had it in my lap, and he yelled at me and said basically he wasn't not interested in the least about reading anything that I brought him. I just told myself to hang in there because he at least will be getting that already done root canal. Feb 6, morning of the surgery arrives. I'm taken to this room that has a long line of gurneys with other patients having procedures. They were all his patients I think. He comes to the end of my gurney with his ass already hiked on his shoulders and starts to yell about this and that. That's when I'd had ENOUGH! I looked him dead in his eyes and said that he was the meanest human being I've ever met in my life. His jaw dropped open because I guess he treats people that don't give him any crap. The man literally made my skin crawl. It's like he has a black soul. In November I was lucky to find God again and am a born again Christian. I wouldn't let that man take a splinter out of my dog's butt much less come near me with a sharp instrument. As I was gathering my things to go, he calls my husband to another room to speak with him privately. Hubby comes back with the black soul doc, who for some reason now has managed a smile if you could call it that. Robert, my better half, said the doc told him that I would be extremely lucky if I even made it through the surgery. If I did make it, that I would be on a respirator in ICU for a week or more. If you ever watch MAD TV, the Lancombe lady says EH, EH--and my feet couldn't get me out of there fast enough. So, I'm looking every place I can find for an oral surgeon that knows the damages that can be done to the RSD/CRPS patient.

Sorry I never said where my RSD started. It's left neck, shoulder down to fingertips, left jaw hurts almost constantly now. Both arms are covered with red and purple ugly lesions. The slightest thing tears open the skin. Have my fingers crossed that the right arm just has the lesions and not the pain, YET. My balance is so bad that my knees look like red apples with lots of bruising that won't go away.

I'm just gonna keep praying and hoping and researching. I apologize for the length of this, and I hope I made sense. I think there are a lot more people suffering with this disease, and doctors are saying it's fibromyalga or some other crappola.

I'm afraid to go back to your response to see if I answered your questions because I might lose this one.

Thank you so much,


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