After several years of dealing with RSD, my wife still has to tell the doctor that she does not want to do certain things and take certain meds. It disturbs me as her husband, who does not have RSD, that this happens because I'm afraid the doctor may dismiss her as a patient. My wife refuses to take certain meds that she says do not work because she is in a latter stage of the disease and that they will not work, cause her to gain lots of weight, makes her head feel funny. She has every right to reject them, I believe. She's been told to go to physical therapy where they've actually made her feel worse by putting her on excercise equipment. She's tried many of these things with no success and has no desire to beat a dead horse over again. What I don't quite understand is when her doctor refers to a third party their desire for her to do these things. I'm not sure who she is referring to but I get the feeling it's the insurance company whom I hate with a passion.

Hi JimKing,
I know exactly how you feel & so does my hubby---we have been "jumping" through the hoops of the medical field now for 7 years. I was told years ago to see a "shrink" because the pain was all in my head. It didnt matter that I couldnt walk or anything like that---I just needed to see a shirnk & that would make me "all better". Sometimes I wonder how some of these doctors these day actually get a license to practice medicine. I find more information about my medical problems on the internet than they obviously know sometimes---it amazes me. Just know that there are obvious "quacks" everywhere---they just arent in one state.
If you go to rsdhope.org they have alot of information there---too much to read in one night----I have found alot of helpful information there. Just wanted to pass along that site---you might want to check it out. Im sorry that your wife has been through the ringer----I hate to hear that someone else has had to go through what we've had to go through---especially when there is no need for it.
Ive said more than once that the doctors need to experience what they are treating their patients for, then they might be more caring & atleast have an idea of what we go through. Im sure that it would make the whole doctor experience a whole new ball game if they had too.
They might not be so quick to judge us, if you know what I mean.
Janet

have youtried fentanyl patch? maybe start at 25mcg/hr and work your way up. if that is too high to start on, they have a 12.5patch.

mike

Hi Mike,
I started out on the patch. They gave it to me years ago for the rsd in my right foot & then again for my back. They also gave them to me when I was in the hospital for my tkr surgery & they worked. The new patch---the one without the gel in them is what the PM doc gave me but they didnt work at all. I was on the 75mcg. When it would rain---it was like not having anything on at all. Even on dry days they didnt last but maybe 1 1/2 days when they are supposed to last for 72 hours. That is why he switched me to opana 20 mg twice a day. That works great but he wont increase my perocet any higher than 7.5/500 & Ive been on them every since my accident on 8-10-07--so its like taking aspirin. He wont give me anything for the spasms that I have constantly or the swelling. Asking for either means according to his notes on my chart that I put be put immediately on the schedule for the SCS. No disscussion, no nothing. I really dont understand why either. Ive been battling rsd for 7 years now with no real solution for the pain & its traveled from my right foot to my back & now my left leg. Ive not been able to bend my knee since 07. Theyve not made any attempt to fix the fact that I only have 1 artery in that leg---your supposed to have 3. I saw 2 vascular surgeons about the artery---the first one told me to quit smoking & the second one told me to shoot the dog that did this to me. I guess thats their solutions to the problem---who knows??
Janet

i dont know anyone who has crps that lasts 72 hours on the fentanyl patches. i use to last half that(36hrs) now i change patches every 48hrs. it is the only med that takes the edge off for me. i only use the gel patches( i havent heard of any others ).

from what you are explaining to me, percocet would be a waste of time(just not strong enough). i used to take norco 10/325 so i know what you mean about "feeling like aspirin".

when it rains i have to use break thru meds that dont do much for the pain but do knock me out for a few hours so i dont have to feel the agony.

zanaflex 4mgtabs work great for spasms. sometimes i need ativan 2mg or valium.

the scs did not work for me. alli say these days is you have to do a trial for the scs. just make sure you get 50% or more pain relief during that trial, if not then dont let them install permantly because you will just want it out of your body a year later.

you know that smoking is bad for you, so no further comment needed except i will say smoking causes circulation problems especially for crps patients. fix the circulation and the pain,swellinf,color,temperture,bp,etc..should get better.

hope this helps,

mike