Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-23-2012, 12:14 PM #11
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Originally Posted by JimsGirl View Post
Sooooo similar! Now I have this hideous dequervains scar. Ugh.

I was seeing a wc dr, he sent me to an ortho, ortho did the DQ surgery and lots of PT, didn't help, changed drs, he did a EMG with a neuro, still no diagnosis. Then I started with a new primary dr for wc and she immediately said, "I think you have CRPS." She sent me to a PM, Neuro, and Ortho, all three said "probable" and scheduled me for a Stellate Ganglion block, emg, and bone test - after the block my diagnosis was changed to "CRPS of the right upper extremity." Dr. Prager was asked to confirm, he did a block, and my diagnosis was confirmed.
I had and emg and mri too before diagnoses. The emg, was awful.
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Old 10-23-2012, 12:22 PM #12
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My 2 sympathetic blocks were not successful either. 2 lsb's, 2 weeks apart. The first one did not give me any warmth. The 2nd gave me warmth but my pain actually increased. My initial PM felt I didn't have crps because of this but he referred me to his partner for a SCS. Sometimes I think it is best to change groups and get a broader picture. I had 3 specialists tell me I have crps and 1 (my initial PM) doubted it. Mine was finally confirmed with biopsy done by a much more experienced PM. My initial PM didn't have the breadth of experience to know that one can have sympathetic independent pain (SIP) AND crps. From what I understand SIP crps is a bit more difficult to get into remission. Good luck.
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Old 10-23-2012, 12:39 PM #13
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Thanks to all who are sharing their experiences. The more I read, the more scared I get. I also see there is no definitive test and have read (other places) that these blocks can actually make things worse. I don't know what we will do, as I don't want to put my daughter through unnecessary procedures. And the EMG? That sounds awful!
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Old 10-23-2012, 12:48 PM #14
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I did not go through the emg. didn't want to put myself through that. A neuro didn't say I had to either. I would not want to subject my child to that particuar test if I could help it. Sometimes I think a dx can be made without that test as it was for me. I wish your daughter all the best. ginnie
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Old 10-23-2012, 03:33 PM #15
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after 4yrs of this crap my epilepsy nuero made the dx. after going over all my sympthomes and saw my arms and touched them.
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Old 10-24-2012, 10:08 PM #16
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The EMG was by far the most painful test I had done. All the others were just eh...not that bad, especially not compared to actually HAVING CRPS.
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Old 10-24-2012, 10:34 PM #17
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First my orthopedic Dr. mentioned something like this, then my neurologist said to remember the name.they then got me a nuclear bone scan.. then 1.5 yrs later a tri. phase bone scan. they used both tests to compare . and they found that my lower right leg was virtually non existent on the triphase test where as a year and a half earlier the found bone bruising, tumors, and multiple pockets of liquid..I cant remember the names of it. that along with numerouse mri,s ct scans, and color changes my orthopedic, neurologist, vascular surgeon, spine specialist gave me a positive dx of RSD/CRPS. the I went to a Pain management Dr. and he did a temperature test of some sort..using a laser machine .. it measured temperature differences in each limb. and he confirmed DX.. now just a couple of months ago. a physical exam done by the Insurance medical examiner re-confirmed a severe case of RSD/CRPS.. you can be sure that the insurance company was not happy with that ..
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Old 10-25-2012, 03:13 AM #18
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For those with a formal diagnosis, what type of doctor finally made the determination? What tests were done?
Mine was my pediatric orthopedic doctor. I was 14 at the time, so I was still able to see the pediatric doctors. He knew me since I was about 6 or 7 from previous injuries from gymnastics (I was an accident-prone gymnast...imagine that). He dealt with my previous two breaks when I was younger, so he got to know that I was able to bounce right back into gymnastics pretty easily. Anyway, after I broke my foot, I went through the whole x-ray and cast deal. After the cast came off, I was given that camel walking boot thing and my doctor said that he trusted me, but just work on weaning off of the crutches first, then out of the boot. When I felt ready, I could go right back into gymnastics. Well, weeks passed and I was still on crutches because my foot just felt awful (RSD kicked in...it started when I was in the cast, but escalated after...). I could not seem to get myself off the crutches. My coaches at the gym noticed that something wasn't right since I always jumped back from injuries. My doctor took notice of it too since he knew I always bounced back. He did an MRI of my foot and then did bloodwork to rule out RA. He also had another RSD patient who was 3 years younger than me, so he was definitely familiar and didn't need to do any additional tests. I guess I was really lucky in a sense since he was familiar and didn't go through the whole trial and error. However, it took a few months after the onset of the RSD for me to officially be diagnosed with it.

Long story short I guess, an MRI, bloodwork, and general observations and manual tests were done by my pediatric orthopedic doctor to diagnose me with RSD.
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Old 11-04-2012, 06:44 PM #19
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I slipped on ice on the sidewalk on my way into work so all of my care has been through worker's comp. I hit my knee when I fell and was originally off work for 3 weeks. I worked then for 4 months all the while fighting to get an mri. When I finally did, it came out clear, with just a severe bone bruise. I had been working with a very long hinged knee brace the whole time. Since my knee was hurting worse and worse and my ortho doc noticed some discoloration on my knee, he said he thought it could be crps. He took me out of work in the middle of June. Luckily, I had an independent medical examination by worker's comp a few days later and their doctor agreed. From there I had a bone scan and was rushed to the head of the waiting list at the pain clinic. Also since I also have fibromylagia, worker's comp was betting on my pain coming from that. On my first visit with the pm, he diagnosed me with crps. I have had 5 lumbar sympathetic blocks, all of which lasted about 12 hours. My doc said the blocks DO NOT diagnose crps. He also told me this was not Fibromyalgia. So, even though I've been through alot trying to get diagnosed and treated, really it hasn't been that long considering I was only injured last Feb. Now I am going Nov. 12 for my first consultation with the doctor who does the spinal cord stimulators, so that may (or may not) be my next step I have not had any probems with workers comp since my diagnosis.
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Old 11-05-2012, 12:55 PM #20
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the first time I heard the words rsd was from a podiatrist. The orthopeadic doctor did not want to hear it every time I told him that I was still in pain and it was getting worse. Thats when I ventured out to the (good looking) podiatrist. After my second surgery I was finally sent to pm.
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