Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Hi Lori, I am happy to share about my son. was diagnosed with CRPS the first part of 2008. October of 2007 had hamstring lengthening surgery to straighten his legs because he has cerebral palsy. had always had a few pain outbreaks due to spasticity. While he was in the casts, his pain was unmanageable. He came out of the casts with a 20% total body weight loss, tachycardia, and hypertension. I got him back home and started with the local doctors ( the ortho was out of state), and he was referred to a pain clinic by the neurologist after the neurotonin wasn't working. He was literally screaming in pain, couldn't stand to be touched and praying to die. April 23 he had his first epidural and the pain was relieved for the first time. Oral meds just weren't working. So, on May 18 had a medtronic intrathecal pain pump put in. He now receives morphine daily, as well as taking lyrica, valium, and lidoderm patches. His CRPS is in stage 2 and is in the right foot, and left leg. He also has the allodyina, (really painful to be touched) The toes now have started to " perch " , and we are working with phenol and botox to relieve that. The CRPS also has affected 's bladder, and colon. In September, had his colon bypassed and now has an ostomy bag because of so many blockages this year. will use a wheelchair probably for the rest of his life. The leg surgery was supposed to help him get out of it. I think CRPS is the worst kind of pain that someone could experience. So many doctors are still completely uninformed of how pain can damage the body, and damage it permanently. As far as talking to some doctors about RSD/CRPS they will acknowledge it, and then say they think it truly doesn't spread. When I point out my son, then they grudgingly admit perhaps it could happen on a freak occasion. I have dismissed a few doctors until they get better informed. The weather absolutely plays havoc with 's pain. As far as I can figure out, may have had some neuropathy in his feet before the surgery. The surgery caused the peroneal nerve to be damaged, and that is what caused everything to avalanche in such chronic pain. The children's hospital that we use here said they had never seen a child as sick as my son. They have gotten him a lot better. I am not giving up, until he is comfortable, and stronger. He is much better than he was last year. We take him to lots of physical therapy, and are tring to get him into a good aquatic program. He tires very easily now, but is getting back on track. How did your RSD/CRPS start? Daisy >My name is Lori & I have been diagnosed with RSDS/CRPS I for a year & a > half now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 " Daisy " wrote: > > > We take him to lots of physical therapy, and are tring to get him > into a good aquatic program. He tires very easily now, but is > getting back on track. Daisy- Please find the nearest warm water pool for your son. I couldn't believe how much a difference it made in my pain level to be able to do physical therapy in one. It got me from being horizontal in bed in pain 24/7 to being up and moving around and having a life. THAT's what a difference warm water therapy made. in Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2008 Report Share Posted November 24, 2008 Daisy, First, I would like to apologize for not getting back to you sooner. I was out of town for a conference. My RSD actually became noticable after I had my second arthroscopy on my right knee. The doctor had to do a lot of work in my knee to make it functional again. Or so we thought. I was in the same shape as your son after I came home and began trying to deal with the pain. I cried, moaned, and clinched my jaw so terribly that I thought I was going to break it or all of my teeth. My orthopedist has been the most helpful doctor I've had throughout this process. We are worried about what can happen with my RSD when I have my right knee replaced next month. I am excited about getting it done because the pain is becoming totally unbearable since it is completely bone on bone. My pain specialist and orthopedist are working together to make sure that my RSD is kept under control as well as possible. Lori >Daisy wrote: >Hi Lori, >How did your RSD/CRPS start? Quote Link to comment Share on other sites More sharing options...
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