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Originally Posted by rachel's daugther
Hello Everyone, I am a new member and have learned a lot reading posts these last few months. I would now like to ask for your advise. My daughter has CRPS She was diagnosed in Feb 2010. We have been to the Rehabilitation Institute of Chicago for 10 weeks (twice a week for 1/2 days). When we started she had it in her left knee and while in re-hab for 4 weeks it spread to her lower leg, ankle, and foot. After it spread they suggested we do a Nerve Block, the 1st lasted 11 days and two weeks later the 2nd lasted 9 days. Both times the pain came back full force. RIC will only do 3 N.B in a 6 month period and her PM Doc does not want to do another one. I am surprised because they worked will for her. She now is in PT 3 times a week somewhere else, doing PT (Tens), Hydro and OT. All seem to be making her pain and CRPS symptoms worse, but I keep telling myself she needs this. Her PM Doctor at RIC does not want to do another nerve block or give her different pain meds, suggests she keep doing what she is doing - feels summer/friends are the best meds/biofeedback/PT/suck it up attitude. She can walk for short periods of time and is on Lyrica, Trazadone, Metanx and was taking Tramadol but didn't like the side effects and felt it was not helping, so has wend herself off of it. When we brought this up to the doc, he does not want to give her anything else. Her pain levels are at a 10 sometimes and I wish she would have dif. alternatives. We saw a Neurologist and she put her on clonidine at bedtime, which she hasn't been taking for long but is starting to have sleep problems. The Neurologist just didn't seem to want to get involved. I'm just not sure where to go from here, I need some guidance. Can anyone recommend another doctor who knows RSD that I can get a second opinion in the Chicagoland area. I'm trying to find someone who will listen and maybe try some other treatments. She hasn't had CRPS for long and from what I read now is a critical time. Doc does not agree with me and says I'm to anxious. I am looking into the 3 week program at Children’s Hospital in Boston, MA and thinking of Oxygen Therapy. Also my daughter does not have pain in the back of her knee, her calf or her toes, is this normal for CRPS. If anyone has any suggestions I would greatly appreciate it.
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I have suffered from RSD for 8 years in the left wrist and right knee. I agree with your doctor who does not want to perform too many nerve blocks. Unfortunately I had a pain management physician who performed block after block after block. Now they do no good at all and in fact have made matters worse.
I am adamant about seeking out a pain management physician who is Board Certified in Anesthesiology, Physical Medicine and Pain Management. I finally found such a physician and he feels the numerous nerve blocks have put me in a position where nothing seems to work. Started Ketamine topically, but MS Contin is the only thing that really works.
I am 4 months post op for a three level Posterior AND Anterior Cervical Fusion. The neurosurgeon had only performed one other such surgery on a RSD patient....she is not institutionalized in a mental facility. I opted to go ahead with the surgery, though almost everyone on this site said "NO" "NO" "DON"T DO IT"! Well it has been 4 months and though I am not healing as quickly as someone who has no medical condition, I am doing OK. My RSD is NO WORSE and my Neck is MUCH BETTER. Basically I am saying " Don't listen to all of the alarmists ". Though your daughter hasn't had time to really get to know her body.....she will. She will learn when a flare is coming and when she needs to go to bed & rest to try to prevent a bad flare. Ice Packs, Anti-Inflammatory Meds, Physical & Occupational Therapy Help....but it takes time and it is not a miracle cure.
I wish you all the best and tell her to keep her head up. That is the MOST important thing. Take Pain Medicine so that she can remain active. FIND A DOCTOR WHO WILL GIVE THE APPROPRIATE PAIN MEDICINE TO HER. If she hurts frequently, I guarantee she will get worse. Lack of sleep makes it worse, KEEPING PAIN AWAY IS KEY to getting this under control - for now.
Good Luck.