Originally Posted by josana
Thank u so much for responding Flaminghands (love the name)...and I completely agree with everything u said. This is w/c so they are extremely slow and I feel like I am the only one with any sense of urgency. Never in my life have I had to deal with such a slow process. The original injury was my hand was crushed in a large industrial trash compactor door. First dr. said Contusion and I was sent back to work and braced for 8mths. I kept telling Ortho it burned like crazy and he kept telling me nerve injuries can take 3,6,9,12 mths to heal and the pain I felt was normal. First MRI said neuritis/neuralgia and then EMG/NCV said tenosynovitis and carpal tunnel with sprain/strain..still sent me back to work with a few limitations like no grasping. Bone scans looked ok which to dr meant see u don't have anything wrong. Even though I was in pain everyday..burning,stabbing,swelling etc I believed the Ortho cause doesn't everyone want to believe they don't need any surgery and it will all heal in time? Finally 8 mths into this I get IME and that dr. said CRPS well I had never heard of that even with all my online investigating I did not see.
When 1st dr. saw IME he says well that is what I've been saying all along..NO u did not...I would have looked it up! 3 mths later I finally go to Pain Clinic...where they have me do 3 more MRI's..results stopped the whole thing as there were partial to probably completely torn ligaments and tendons and tennis elbow and torn TFCC wrist, torn UCL elbow, and possible nerve impinged in Cspine. Pain clinic at that point said get another Ortho opinion I am not an Ortho. It took 5 additional mths of arguing with dr. and w/c to get that appt with a dr. I chose. Results CRPS 1 or CRPS 2 or BOTH.
So now I am waiting again to see if they will let me have a Physiatrist, who deals with nerve,bone,soft tissue and nerve blocks etc. so I'm told, cause I want the best person there is. After reading the CRPS websites BUNCHES OF TIMES...I feel like I may be in the category of ABC syndrome, b/c cold takes pain away an always has...Ice was the only thing they gave me.
So this is where I stand, except for the fact the nerve was part of initial injury and not sure if that pertains to ABC syndrome, I suppose I will have to figure out my dx by myself. Never thought a yr and 1/2 ago I would be in this shape. I have educated myself so much I now feel I should be given a Medical degree and Law degree....LOL....Thanks so much and any advice anyone has I am thrilled to hear.......
Hi Josana, I feel sooooo bad for you sweetie! Your story is somewhat like mine in the fact that NO doctors would listen to me or help me. They just kept passing me along to someone else or told me it was normal. (my ortho Dr) My PCP kept telling me to stop drinking coffee and do more PT and that she had no idea what was wrong with my feet! My RSD was brought on by two knee surgeries and I ended up with horrific burning pain, feel like my feet are in vice grips with someone stabbing them with a cork screw. And of course the bizarre color changes and terrible swelling. I have lots of other strange, awful symptoms too. Anyway, I really just wanted to tell you I know exactly what you are going through!!! DO NOT give up! Keep pushing hard and stick to your guns no matter what anyone tells you. This disease strikes so fast and it is so important that you strike back fast. What are the drs telling you to do next? Do you have a PM Dr that has treated RSD before and is super familiar with it? If not, are you calling PM clinics in your area to find one that deals with RSD? I know you are w/c, and I don't know how much that restricts what drs you can see, but I cant stress how important it is to get a super knowledgeable PM that knows and treats RSD. I hope I haven't upset you with what I have said, just really want you to get the right kind of help you need as soon as you can sweetie.
All of us on here know just how you feel and where you're at so post as much as you need to and someone is on here most of the time that can help or at least give you a cyber hug when you need it. I hope that some or anything I have said can help you even if its just to let you know you are not alone. *gentle hug* I hope my rambling on helped if even just a little. Hang in there sweetie and remember NO ice!!!!! Ice makes RSD worse. I hope you are having a painfree night and try to hang in best you can.