Reflex Sympathetic Dystrophy
My life has been crazy with a diagnoses of Reflex Sympathetic Dystropy which is a neurological condition that causes severe disabilitating pain in my legs and can even be in my whole entire body. The pain of this disease is said to be worse then cancer pain. I can believe it. I have had ten major painful surgery, but they were nothing compare to RSD pain. I could spend my day screaming in pain. The pain can last 24 hours seven days a week. Strong pain meds don't even touch it. Diludid shots don't even touch it. The pain is a shrap shooting pain with burning that feels like I am on fire. I have been getting nerve blocks every week for six or more weeks. Thoses injections have been a blessing. Everyone with this disease has different things that work for them. Some people take neurotin and that helps them. Broken legs, surgeries, car crashes, and many other issues can cause RSD. My was caused by a hospital error.
This is what I have been dealing with all fall.
This is what I have been dealing with all fall.
Is your dx of RSD a new dx or have you known that u have this disease for awhile? U certainly do a good job of describing the torture of this horrific malady. I also have RSD or CRPS as they now like to call it (Chronic Regional Pain Syndrome.)
ReplyDeleteI got it from an auto accident in 1998 when a woman blew thru a stop sign and totalled my car and myself. It took two years to get the dx, and during that 2 yrs I had been accused of being a drug addict/narcotic seeker and told to see a psychiatrist for mental illness. It took a pain specialist (Anestesiologist) who dx RSD on my first visit and immediately put me on Sched II narcotics. As you rightly state, they do not do much. In 2000 he implanted a morphine pump. I was forced to quit work and part-time school and go on disability.
In 2005 I developed and was dx with Narcolepsy, the sleeping disease. I must take amphetamines to stay awake during the day. Cannot, for ex, risk driving without taking amphetamines as I could very easiy fall asleep at the wheel. Having to cope with these 2 disorders, plus fibromyalgia, is a huge effort to survive each day. The sedating effects of the pain meds interfere with the strength of the amph to do their job keeping me awake. The side effects of all the meds, esp the amph, are awful, inc lack of saliva, constant cotton mouth, shakiness, foggy brain, sometimes total blackouts... I take most of my pain meds at nite, which is when the amph is wearing off. So while I am coming off the uppers, I am feeding sedating meds to my body, which culminates in a crash, leading to blackouts. I find myself passed out w my head on my kitchen counter for at times hrs at a time, for ex or w my head on my desk at 4am and my last memory was at 7pm.
I talk to friends on the phone and have no memory of it nor what was said. I could go on and on.
If u r new to RSD, I'd be glad to share w u some of the best sites online to help u understand the disease...I know I've learned more from these gr8 sites than I have from my tx doc.
Nice fill someone in on and this post helped me alot in my college assignement. Thank you on your information.
ReplyDeleteI too have RSD, auto accident, and was diagnosed a year later with celiac disease. I have such severe pain, and sometimes I do not know if I am having an RSD flare or the celiac. How do you manage both.
ReplyDeleteWell I acquiesce in but I dream the brief should have more info then it has.
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