View Single Post
Old 10-04-2010, 11:19 PM
yiisd yiisd is offline
Junior Member
 
Join Date: Aug 2009
Location: Texas USA
Posts: 49
10 yr Member
yiisd yiisd is offline
Junior Member
 
Join Date: Aug 2009
Location: Texas USA
Posts: 49
10 yr Member
Default 8 Years & Still Fighting

Quote:
Originally Posted by Navysniper7 View Post
It has been 15yrs since my initial accident. It only took the V.A. doctors about 14 1/2yrs to diagnose me with CRPS. They finally snet me to a pain management center who claim to be one of the best with treating CRPS. A plan of action was set and everything was a go and I was on board. However two months later everything has stalled and they are unsure what the next step they should take is going to be. I have been on medications from the start, and they have tried the nerve blocks with no success. I am really considering amputaion to get rid of the nightmare, am I wrong in thnking this way? Or do I stay the course of pain and misery and medication? I am lost and lossing hope and so is my family who is also struggling in this nightmare with me.
I was diagnosed with RSD/CRPS 8 years ago. I have been to doctor after doctor and all have agreed: Amputation will do no good as the pain is not actually in the limb where you think you feel it; so I STRONGLY encourage you not to even consider amputation.
It is hard, very hard, but if you can find a doctor who will work with you, y'all can come up with a combination of drugs that will help. It may take some time, and they may change from time to time, but there are drugs out there that do work. For 1.5 years Lyrica worked great for me, then all of a sudden it stopped helping. I am not back on Ms Contin (Long Acting Morphine) and Morphine Immediate Release for break through. Though it isn't perfect, it works where I can have a half-way normal life. Don't get me wrong. I take about 6 other drugs in my "cocktail" - SEROQUEL being the newest one they added......and with these, I was confident enough to have a three level, 360 degree cervical spinal fusion surgery. I knew going into the surgery that my CRPS could flair to such a degree that I could be institutionalized, but I was willing to risk it. It has been 6 months and I am no worse than I was to begin with. EVERYONE warned me not to have the surgery...as the surgeon is operating right where the nerve center is and it could cause all kinds of problems...But I refuse to let this Horrible Condition Control 100% of my life. It controls enough of it as it is.
My advice: Find a physician who will work with you with the medications. It will take several probabably, but make sure he gives you one that helps you get at least 8 hours of sleep per night because, regardless of whether you needed it before or not, you need sleep now. Combine the sleep medication with some strong pain medications and go from there.
NOW YOUR PART: As hard as it is, you need exercise. Even if it is just a small amount. I promise you it will help if you will keep it up. It is hard and many days I would rather die than even think of exercising. But on those days, I wait until I feel as good as I think it is going to get and then I walk. Maybe just 50 yards, maybe more maybe less. Sometimes I walk in my house just around all the rooms and hallways, but I try and that makes a ton of difference. Just try it. Don't do anything drastic. There is a doctor and there are medications that will help you. I know this....but I also know it may not come quickly or easily. I spent 3 weeks in the hospital just exercising my wrist because I had lost all use of my hand/fingers. BUT, today I type this email with both hands, with all 10 fingers. There is help, just fight for it.
I am not on this sight much, but I will be more than happy to give any advice I can. I went through an entire round of chemotherapy for cancer while I have had RSD. I survived CHEMO while suffering from RSD/CRPS. You can do it.
yiisd is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
finz (10-06-2010), loretta (10-07-2010)