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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 06-19-2012, 02:20 PM   #1
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Just Not Sure

Back in February, I slipped on ice on my way into work and landed on my knee. I have had continued pain, not getting better, and even progressing.

Since I was on company property on my way into work, this is a worker's comp case, which has complicated my medical care from the start.

Since I have a relatively clean MRI, other than a pretty nasty bone bruise but continue to have this pain and swelling, it's been a hard thing to figure out. I noticed maybe about a month after the injury that my knee had some white blotches on it and turned purple if the room is cool. My other knee does not do this. I was at the OS' office last week and mentioned this to him. He did notice it as well and there is a temperature difference of each knee. He has been saying from the start that this pain that I am having is way out of proportion to the injury, but that he believed I was in pain. He says he believes I could have CRPS and wants me to continue physical therapy with desensitization, have a bone scan as a tool for diagnosis, and also gave me a referral to a pain clinic.

I have been going to physical therapy and my PT does not discount my doctor's assessment, but some of the things she says make me think that this is not what I have going on at all. I do not have alot of pain to light touch, which my PT thinks I would have. What I have is more like a deep, burning, tearing of my muscles, and it is very tender, but to a harder touch.

I have read enough to understand that CRPS is different in just about everyone, but I am wondering if anyone else has a deeper burning and not so much a burning on the skin.

 
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Old 06-20-2012, 12:48 AM   #2
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Re: Just Not Sure

I have very little problem with light touch. My bigger issue with my toes, is wearing a shoe that compresses across where my toes meet my foot. Of course this is where most dressy, even dress-casual, shoes have structural reinforcement. (Had at least a six degree temp difference between my feet before starting meds, so two pain management groups have diagnosed as CRPS.)

 
Old 06-21-2012, 05:01 PM   #3
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Re: Just Not Sure

So now my GP is pretty much on board with the CRPS diagnosis. I had to postpone the bone scan as I haven't heard anything from worker's comp. They haven't approved it yet.

I think the biggest help I've had with this so far is the TENS unit I got from my PT. Now I just hope worker's comp will let me keep it.

 
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Old 06-29-2012, 09:23 PM   #4
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Re: Just Not Sure

I have a lot of the RSD symptoms . that does not mean that all will. I have spoke to people with 2 or 3 symptoms.. the sensitivity to touch isn't in every one its not the staple sign that lot of dr,s see it to be.. the discoloration swelling sounds like RSD. once comp approves bone scan you should get the test done then have dr request a three phase bone scan.. good luck.. it sounds like RSD .. but I hope they find it not to be..

 
Old 06-30-2012, 06:27 AM   #5
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Re: Just Not Sure

It's been 2 weeks since I had my worker's comp IME and I still haven't heard anything. I don't think it usually takes this long to get a report back. I'm thinking they requisitioned all of my past records or something--or they are just playing with me. They are not paying me either. My lawyer said to wait until I get the report back to call them. Still no treatment other than physical therapy, which I am gaining some strength and range of motion, but my pain levels are not going down, in fact going up and I think the pain is spreading up and down my leg. I am getting so frustrated. I have to wait on worker's comp because I don't have any other health insurance.

 
Old 06-30-2012, 10:25 AM   #6
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Re: Just Not Sure

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Originally Posted by fluttersby View Post
It's been 2 weeks since I had my worker's comp IME and I still haven't heard anything. I don't think it usually takes this long to get a report back. I'm thinking they requisitioned all of my past records or something--or they are just playing with me. They are not paying me either. My lawyer said to wait until I get the report back to call them. Still no treatment other than physical therapy, which I am gaining some strength and range of motion, but my pain levels are not going down, in fact going up and I think the pain is spreading up and down my leg. I am getting so frustrated. I have to wait on worker's comp because I don't have any other health insurance.
first let me say this even if you get health coverage.. private insurance do not put a comp related injury through it. you can mess up your comp case, lose you medical ins, and be sued for amounts or more that medical paid for and possibly face charges of fraud.(at least I know this to be true in new york) also ..again I'm in NY but I had my Ime end of may and got the results the middle of the following week so I wld cll you atty ann. and ann. they should have it by now.. sitting on this can cause further problems i.e. stress makes RSD worse... good luck

 
Old 07-01-2012, 10:31 AM   #7
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Re: Just Not Sure

Thank you. I talked to my attorney 3 days ago and they have not heard anything about my IME yet either. I am so confused. I have been going to physical therapy and have a TENS unit. I am on neurontin and topamax and norco for pain but have been on those for awhile now thanks to fibromyalgia and some of the things that go along with that. My GP and OS definitely do not think this thing in my knee has nothing to do with the fibro. Now I have awful burning all the way up my thigh and just about down to my ankle. I go see my OS tomorrow for what was supposed to be follow up on the bone scan but since I never got approval from WC, I never got that. He will probably want me to go back to work but since for some reason he said no work pending IME, I know they won't let me go back since I have nothing back from that. I know they are playing games with me now. I am so afraid to go back to work anyway especially since the pain has increased and seems to be spreading and the original pain is still there. I know that since I can move and be mobile I need to. The difference is if I do it on my own pace I can stop when I need to.

 
Old 07-01-2012, 01:07 PM   #8
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Re: Just Not Sure

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Thank you. I talked to my attorney 3 days ago and they have not heard anything about my IME yet either. I am so confused. I have been going to physical therapy and have a TENS unit. I am on neurontin and topamax and norco for pain but have been on those for awhile now thanks to fibromyalgia and some of the things that go along with that. My GP and OS definitely do not think this thing in my knee has nothing to do with the fibro. Now I have awful burning all the way up my thigh and just about down to my ankle. I go see my OS tomorrow for what was supposed to be follow up on the bone scan but since I never got approval from WC, I never got that. He will probably want me to go back to work but since for some reason he said no work pending IME, I know they won't let me go back since I have nothing back from that. I know they are playing games with me now. I am so afraid to go back to work anyway especially since the pain has increased and seems to be spreading and the original pain is still there. I know that since I can move and be mobile I need to. The difference is if I do it on my own pace I can stop when I need to.
first thing I learned is to not make decisions out of fear anger or confusion..be logical and to the letter. if it says no work until results of IME or three phase bone scan than thats what you do. If comp is dragging there feet you need to get on your atty. have them call for the ime report. call every day if you have to. It is their job to be YOUR voice to insurance , state comp board , and courts . thats why they get paid. if they aren't doing their job you need to detail what YOU need and they have to try to make it come to life.Now I know its frustrating and time consuming of time we don't have but it is comp and as far as I've seen that part remains true in every state. vent as much as you need here but remember to make decisions based on knowledge not panic.... good luck and have your atty,s stay on the ins.

 
Old 07-02-2012, 09:52 AM   #9
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Re: Just Not Sure

Just had my OS appointment. I can tell you that doc is so frustrated. He is trying to help me but WC just has his and any other help for me tied up in their whole system.

I told him how now my thigh and lower leg hurt all the way down to my ankle. My whole let was purple at the appointment so he definitely saw it. Worker's comp has not approved the bone scan or pain clinic. He is conferring with a neurologist to see if an emg would be in order, but still, WC is going to be the controlling factor here.

So for me, pain, but no diagnosis, which I know at this point in the ballgame is not uncommon. My OS said that he is very suspicious of CRPS/RSD.

I have PT in a few minutes and when I get home I guess I will play phone tag with my WC adjuster and attorney and see what is up and try to get something moving one way or the other.

 
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Old 07-08-2012, 09:54 AM   #10
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Re: Just Not Sure

I called my WC adjuster since it's been about 3 weeks since I had my IME and I haven't heard anything. She said she could not speak to me since I have an attorney, so I called my attorney. My attorney called WC and told them that she was just in the background making sure my rights are protected and that yes, they can talk to me. Anyway, I got a call awhile later from my lawyer stating that they got a letter about notice of compensation, which she said they don't usually get unless they are going to pay me. It's been almost 4 weeks for me without pay. So she called WC again (why WC couldn't have told her this in the first place, I have no idea) and they said a back pay check was coming and they will be sending me a weekly check until this is sorted out.

Soooo------I am thinking that hopefully WC will work with me on getting this diagnosis and treatment. THey have so many hoops to jump through it's crazy and I know they want to starve you out so you just give up and go back to work. Maybe that is how they separate the fakers from the real cases???? I know alot of people who were really injured that have gone back to work and suffered the rest of their lives unfairly though,

 
Old 07-08-2012, 06:22 PM   #11
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Re: Just Not Sure

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Originally Posted by fluttersby View Post
I called my WC adjuster since it's been about 3 weeks since I had my IME and I haven't heard anything. She said she could not speak to me since I have an attorney, so I called my attorney. My attorney called WC and told them that she was just in the background making sure my rights are protected and that yes, they can talk to me. Anyway, I got a call awhile later from my lawyer stating that they got a letter about notice of compensation, which she said they don't usually get unless they are going to pay me. It's been almost 4 weeks for me without pay. So she called WC again (why WC couldn't have told her this in the first place, I have no idea) and they said a back pay check was coming and they will be sending me a weekly check until this is sorted out.

Soooo------I am thinking that hopefully WC will work with me on getting this diagnosis and treatment. THey have so many hoops to jump through it's crazy and I know they want to starve you out so you just give up and go back to work. Maybe that is how they separate the fakers from the real cases???? I know alot of people who were really injured that have gone back to work and suffered the rest of their lives unfairly though,
yeah That is what they say.. but who is there to protect the ones that suffer like us... i mean do they really think we like living in pain, having to jump through these hoops. but we do it.. my insurance just called for a comp hearing. wondering why.. and stressing because I tried to paint a little of my house on a good day..on and off . and my wife was home so I was also on heavy pain meds.. I guess their idea is that we shouldn't even try to do anything?? we should just lye around and do nothing.. Im stewing in my juices over this and its driving me nuts. I no longer feel like a free person, I feel like a prisoner. a prisoner to pain and a prisoner to beurocracy (how ever its spelled). My Dr (neurologist said I should always do that my body allows me to do. when my body allows it as it might help lessen the issue. do I need this in writing?

 
Old 07-08-2012, 07:27 PM   #12
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Re: Just Not Sure

I hope you did not misinterpret my post. I feel the exact same way you do. My PT told me I should try riding my bike (I'm thinking yeah, right, but anyway). I said that's all I need is for someone from work to report that they saw me out riding my bike. He said tell them it is part of my physical therapy. That is all well and good but they just don't realize what we have to go through to get any of this approved. It would definitely get worse before it got better (the situation).

 
Old 07-09-2012, 09:08 PM   #13
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Re: Just Not Sure

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Originally Posted by fluttersby View Post
I hope you did not misinterpret my post. I feel the exact same way you do. My PT told me I should try riding my bike (I'm thinking yeah, right, but anyway). I said that's all I need is for someone from work to report that they saw me out riding my bike. He said tell them it is part of my physical therapy. That is all well and good but they just don't realize what we have to go through to get any of this approved. It would definitely get worse before it got better (the situation).
yeah OMG.. we are in pain and need appropriate medical treatment why (because we are on comp, or what ever other accident insurance) are we treated like criminals.. really do they think we are having fun going to dr,s all the time doing pt and these friction drugs they gave us.. REALLY!!!!
sorry just having issues myself right now.. comp is making me go to another hearing saying they do not think that my back is related to RSD injury.. just wait till they see what my neuro is sending to them now... with both legs almost black (ish) more purple red bluish.. black ish.. and now with RSD spread to the belly area, both lateral sides of chest in parts of pectoral, and back, and both arms... one.. what will they say now.. huh??? just so not up for games. this is making me very angry... and screwing with my stress levels and emotions . .. one

 
Old 07-09-2012, 10:05 PM   #14
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Re: Just Not Sure

You're not alone. I had an accident in early December and I just got diagnosed with cprs type 2, 7 months later. I've had MRIs, surgeries, injections, medications and will start nerve blocks. It's a long herd road but like everything, catching it early is everything. I went too long and am screwed for life. I hope you get better luck. Best wishes.

 
Old 07-10-2012, 08:32 AM   #15
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Re: Just Not Sure

Well, I have a positive thing to post this morning. My lawyer called and she got the IME report (which she will be sending on to me). I do not know all of the details but she said I will be very pleased.

Apparently the IME doc agrees with my other doctors about the potential RSD diagnosis and has recommended following their treatment plans and I will continue to receive compensation. I am so relieved I cannot tell you.

I know this is by no means the end of my struggle and just because this WC doc says this does not mean the next one will, etc, etc.

It's definitely still a long, long road ahead.

 
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