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 06-24-2015, 05:46 PM #1
dcneedshelp dcneedshelp is offline
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Where to start???? My whole life changed on Feb 9th, 2015. I fell on some ice and broke my ankle. Trimalleolar fracture with both bones fractured in 3+ places. On Feb 17th I had ORIF to fix the fractures but the ortho was not able to reconnect 2 bone fragments of my tibia because my bones were too thin. So I spent the next 8 weeks in bed on coumadin and then went to a boot that didn't fit because my foot was "stuck" in a pointing position. I was not able to flex my foot up at all. The ortho said that my achilles was just too tight and started me on PT to just stretch my achilles. I kinda knew then that there was something just not right. I told the ortho that I was having shooting pain across my foot and he just passed it off as "healing" pain. So I continued with PT and got my range of motion back with flexion and extension of my foot but was unable to move it from side to side. I was also having discoloration of my left foot along with quite a bit of swelling that only happened when I got up. My ortho started me on gabapentin (600 mg / 4x a day). I started taking pictures and documenting things, and it took till 16 weeks post op for him to really pay attention to what I was saying. I still was not able to put any weight on my left foot without incredible pain and the swelling and discoloration was still there. He diagnosed me with CRPS and referred me to a pain management. I started sympathetic nerve blocks in the hopes that I would be able to walk again. We scheduled my nerve blocks 2 weeks apart for a total of 12 weeks. My problem is that after I get the block, it takes away the pain and I can walk, but only for about 1 week. The discoloration is still there and the swelling is a bit better. Being able to walk for 1 week and then waiting for the rug to be pulled out from under me has been really frustrating, to say the least! PT has discharged me because they said that there is nothing else they can do for me without me being able to walk on my foot. I feel like these shots (which are painful to get) are just empty promises that I am going to be able to walk on this foot again. The medical bills are rising so fast that I am not sure how much more I can afford to pay for. My daughter is getting married in 16 days and I am wondering, will I be able to walk down the aisle or not. Does this ever stop? Everything you try, whether it is new medication, or injections, seem like they may help one part but never all of it. And it always comes back to not being able to walk..... The depression seems to be getting worse with every new attempt and being on neurological meds and pain meds is not an option when I want to drive and go back to work. Where do I go from here? Is anything worth it? It all seems like empty promises......
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Old 06-24-2015, 06:00 PM #2
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Hello, welcome to our site..

By any chance did you get any second opinions on the original foot injury , post surgery? Just to make sure there is no fixable damage that can be repaired?
Preferably someone independent from the original surgeon...
And the most highly rated/ skilled you can find...

But there are some risks of spreading of the CRPS if more surgery is done.. but if the other dr sees something that might be causing some of the pain....it might be worth it.
there are blocks and prevention protocols if a surgery is needed.
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Old 06-24-2015, 06:12 PM #3
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Thanks Jo*mar. Yes please, please get a second opinion and NOT from someone in the same practice. It is absolutely fair to have someone else take a look and potentially get imaging such as MRI to be sure there is not something obvious in need of attention. Nerve Conduction Study may also be helpful if your inability to move your foot side to side is from a nerve issue. Having another surgery is not what anyone wants to sign up for but complications do happen that sometimes need revision. You don't want to live this and later find out there was something that needed to be addressed.

It is difficult for surgeons to admit that a procedure did not have the planned for outcome. Your doctor probably cannot step far enough away from this to accurately evaluate you. I went through something similar with a nerve injury from an ortho procedure. My doc was convinced it was a success. It took the operative report from another surgeons revision to convince him something had gone wrong.

IF you require another procedure the following has been shown to help in studies from Stanford. 900mg gabapentin pre-op and 100mg minocycline twice per day for one week decrease the chance of chronic pain. Regional anesthesia is beneficial and sometimes people get ketamine during procedure and sympathetic blocks before and/or after.
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Old 06-26-2015, 11:17 PM #4
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Hi dcneedshelp! I can certainly relate to your story. I have crps in my right leg that affects my hip, knee, ankle, and foot. Crps came first then i broke my ankle and it caused such a flare. I couldnt wear the boot due to the searing crps pain in that ankle n foot. When the cast came off the doctor wanted me back into the boot but i said no way, so he showed me how to wrap it with an ace bandage. Then i bought an ankle brace /support online. Its black, you slip your foot into it and there are shoe laces that you tighten and tie. Looks like something a wrestler would wear. it kept my ankle stable so i could walk a bit. It's thin enough to fit inside a sneaker. I wore it until i gradually built up the muscles of my ankle. Itkeep up with those PT exercises at home if you can. Side to side movement was hard for me too
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Old 07-01-2015, 04:03 PM #5
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I'm sorry to hear about your diagnosis. The only advice I can offer after 20 years with this disease is to not use ice. If the doctor tells you that moving and exercising the affected area won't cause any further damage, then move it. Exercise, stretch, go in the water to do it if you have to. The pain is a trick of the mind. If you don't use it, you can lose it.

Again, make sure your doctor says it's OK for you to move, stretch and exercise the area.

I wish you the best of luck.
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