Hi,

I've been a member of DailyStrength for years. I used to be thaliajen. I've had RSD for 19 years. I had 3 great doctors. My 1st doc was a Physical Medicine Specialist and he diagnosed me. I was fairly new to pain AND pain meds. We tried so many types of meds and therapies. A year or so later, I started to get my life back. My RSD was/is in my left foot and now, left lower leg, too. I didn't think pain like that existed until I was diagnosed.

I was titrated to a proper dose of narcotics, now called opiods. I grew to live with the pain as best I could. Soon, I was back to work. I met a man a year later and we married in 2000. In 2009 we adopted the sweetest baby boy alive. In between, I lost my mother, buried my firstborn child, and miscarried twins. But I never gave up. So being there to help deliver my child in 2009 was special. In 1997 when I was diagnosed, I met a resident whose sister or cousin or someone, had RSD. He was trying to be kind when he told me that I'd be in a wheelchair by the time I was 40. Well, I'm 47 and up until this week, I've avaoided that wheelchair.

Sometimes I have had to use a cane, and that is okay. Normally it is in the Winter and I try hard to do as much walking as possible the rest of the year. I've been an active woman, flying 50K-100K miles a year for work, taking care of my son, and living a life that made me happy. Over the years I have also developed spongey kidneys which means I pass a lot of stones. That part is almost as bad as RSD. I have a wonderful Urologist and a new Nephrologist who are both determined to help me with this. 

As I've aged, I've developed artritis in both knees, though the right hurts more than the left at this point. It really depends on which side I hold my cane. I sadly, also have arthritis in my lower spine, but I'm supposed to get that looked at more closely as it has been deterorating over the past few years. Still, I count myself lucky, as I have lead a life while still an RSD patient. I was lucky- I was titrated to the right dose of the right meds. In 19 years I never had to increase even one pill, not one med. It is strange, very strange, but very true. 

So when I heard about the new CDC guidelines, when I read about it in chronic pain, I wondered if I am the only one here losing a huge part of my life to this scandlous decision. To say that chronic pain is an easy thing to treat with a one-size-fits-all dose, to say we're all the same, is crazy. Chronic Pain is all different. And I KNOW that RSD pain or, CRPS pain as some call it, is nothing to play with. IF your pain was controlled by opiods, is it still? How is everyone doing?

I'm not just worried for myself. I have a great doctor. But I lost a friend with RSD to suicide, and that scared me. That was years ago, before these guidelines. Not all of us found meds that work for us, but those of us who did, deserve to at least keep our lives as they are. I feel terrible for anyone who hasn't found the right treatment. I read some posts today here that made me feel awful. No one in this day and age should be in this kind of pain! 

I wish you all well, and hope your pain is controlled. Please feel free to PM me or answer here. I truly want to know what people with this disastrous disease are doing to control pain and LIVE. 

God Bless!