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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 02-09-2012, 08:33 AM   #16
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Re: crps 1 or 2 or both

Quote:
Originally Posted by Kevscar View Post
Tell your ortho's that they should refer to your condition as FIIKS, F'ed if I Know Syndrome
Indeed. Thanks for the laugh Kevscar, needed it. Now I hope i can get a nap. I have to nap all the time because I can never sleep. I hope I see you on here later. Karen

Last edited by hatemyfeet; 02-09-2012 at 08:34 AM. Reason: spell

 
Old 02-09-2012, 08:38 AM   #17
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Re: crps 1 or 2 or both

Thanks Karen......think I'll use that line tomorrow, as they must be the same Dr. you went to...
Have a great day!

 
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Old 02-10-2012, 06:01 AM   #18
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Re: crps 1 or 2 or both

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Originally Posted by josana View Post
Thanks Karen......think I'll use that line tomorrow, as they must be the same Dr. you went to...
Have a great day!
Josana....you're slayin' me sister..you are so funny. But, I would NOT recommend my err...ahem....type of people skills if you want future assistance from your ortho. I was fully aware that I would not be going back to that "doctor" ever again. Oh, and I got all my medical records from them before I made my call to them. But, I gotta say, it was the most enjoyable message I have ever left anyone in my life. Guess in a way that's kind of sad for me isn't it? I sure hope you are treated better and get all the help and information that a competent ortho Dr should give any and all his patients. Boy I do sound bitter don't I? Let us know what happens at your appt ok? * hugs* Karen

 
Old 02-10-2012, 07:27 AM   #19
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Re: crps 1 or 2 or both

Well...if u must know...I never planned on going back to this dude either, but here I go.
After today I hope to never go here again...thought about what I would say to this Dr. for so long, like 6 mths, as that is the last time I saw him...and I woke up this morning with a clear thought (how rare) that I would be so sweet and kind and butter him up so that he would have a hard time refusing my requests....You get more bees with honey, if u will.
So, my first words when he walks in the door will be..."there's my favorite dr.....I've missed seeing you every 2 weeks...How are you?"....
TRANSLATION...."It's me ur favorite patient, ha!....it's been a great break not having to come and endure the wrong dx every 2 weeks....How the hell r u, retire yet?"
Thanks for your support and well wishes...I need to go pray now for good results today!!

 
Old 02-10-2012, 07:38 AM   #20
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Re: crps 1 or 2 or both

LMAO!! Heeeeheehee....you always make me roll with laughter. I think you have the perfect plan for the day. Go get 'em tiger. I would ask for a copy of records too. Ya never know what you may need them for. I really hope and pray that the appt goes smoothly for you. Bite your tongue if ya half to. Hmm..that last bit of advice seems a little weird coming from me. Goodluck sweetie and do let us know how it goes! Karen

 
Old 02-10-2012, 12:11 PM   #21
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Re: crps 1 or 2 or both

Well...it is done...and I don't really know anything..BIG SURPRISE....He tried to call w/c and they were out to lunch..another big surprise, they've been out to lunch over a yr. now.
Told him everything...he was surprised to see me, as w/c told him I was getting a new dr. and then I presented him with my IME which he didn't know about..again surprise!
Told him it should not take 5mths to get another opinion, he agreed. I said when you tell w/c to do tests etc. they do it..tell them I need a new dr. a physiatrist who can handle this properly and then I said apparently I have been going to the wrong type of dr all this time. Please tell them that this CRPS requires urgency, they obviously don't get it, if it were their arm they would know what urgent meant. Then in leaving after 1 and half hrs....he tries to schedule a new appt. with me for 2 weeks out, I said do I really need another appt. b/c once you speak to w/c I need to be going to the physiatrist, he agreed and said he would call me after speaking with them....Crazy!!
to be continued after he calls me....hoping and praying for that BIG SURPRISE call to be in my favor.

 
Old 02-10-2012, 12:13 PM   #22
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Re: crps 1 or 2 or both

Yeah....I think they already know that....it's just they have to be professional in front of us...but I bet Dr. is muttering that exact line after leaving the room....thx

 
Old 02-10-2012, 12:16 PM   #23
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Re: crps 1 or 2 or both

Yeah I think they already know that, it's just they have to be professional in front of us...bet the Dr. is muttering that exact line after he leaves the room tho....Thx

 
Old 02-11-2012, 07:41 AM   #24
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Re: crps 1 or 2 or both

Wow! You get down with your bad self. sounds like it went way better than expected. I hope he gets things going for you and fast! Please let us know when you hear anything?? I have a evil headache and am going back to bed. *Big hugs* K.

 
Old 02-11-2012, 11:09 AM   #25
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Crps

Hi, You have certainly had the run around. I feel your "heated" pain. I have been having the hot cold issues for a few months along with the colorful changes in my hands and feet. A bit of background (12/10 ACDF 2 levels, car accident 9/2011) In my opinion I have CRPS. My ortho is not sure as it is not has area of expertise. He sent me to a vascular dr. I went to the chief of Vascular Surgery at LIJ. He said I had CRPS based on my descriptions, what he saw first hand (my hands and feet were very cooperative)and prior EMG's and MRI's. Then tried to figure out what to do with the info. I was told to find a physiatrist that is knowledgeable with CRPS. Not so easy. Finally did and went to the appointment. He felt it wasn't CRPS due to similar symptoms in both hands and feet. He said that it generally affects either the right or left but not both at the same time. He felt is was Raynauds. Not so sure I agree as I have not read anywhere that Raynauds causes the burning heat. He did say he would perform an EMG to test for nerve damage not sure if he was referring to one or both hands or my feet. He also stated that he could perform a Stellate Ganglion nerve block. If that helps then he is wrong and it is CRPS if not it may be Raynauds. At this point I am ready to schedule the nerve block. I just want my life back and to be painfree again. It took my more than 5 years to bit the bullet and have my neck fused. I was feeling so good after 6-7 months post surgery. Now I feel I am back to everyday being filled with various amounts of pain. Sorry for ranting and carrying on. Generally I do have a positive outlook. I am thankful that the car accident was after I had been fused and the car that was in front of me had just turned. Hope all of you have a painfree day.

 
Old 02-14-2012, 07:37 AM   #26
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Re: Crps

Thanks for posting frenchfri...yes, i have had a tuff time of this...patience is running low.
I understand it is hard to dx things like this, sorry for all your pain. Am I understanding u right?...u have hot as ur pain...cause I have cold, like when my arm etc acts up it usually starts it stinging thing, not a burn as it was, more of a stinging and then it gets cold in spots, like wrist and elbow and hand where ulnar nerve is bothered. Please let me know how the nerve block goes? I am supposed to get one as well...hope they hurry up with all this....

 
Old 07-22-2012, 03:41 PM   #27
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Re: crps 1 or 2 or both

Josana, I know all to well about work comp! My injury is the result of my CRPS. I had to fight just to get an MRI done much less seeing an orthopedic and PM doctor! One thing I have learned through all of this: you have to be your biggest advocate!!! If I left it up to my doctor, I would have never had an MRI, I wouldn't be seeing an orthopedic or PM doctor, and I sure wouldn't be having physical therapy right now! I got on the phone with my human resource department and talked to them about my workers comp claim, I got the phone number of the person from workers comp and the contact person there, and then I bugged the crap out of them until I got what I needed!!! Dont wait on the doctors to do these things for you, sometimes you have to put legs to your situation and try to push for the things that you need!!! I have 2 torn tendons and my orthopedic surgeon wants me to finish up my 6 weeks of physical therapy and try to get the CRPS under control, and then they will do the surgery to repair the tendons. If you leave the tendons torn and have no surgery, this will result in constant pain from that as well as aggravating the condition. Once you get the CRPS under control (as much as it can be) I would go ahead and have surgery from there. After I have my surgery (which is supposed to be in about a month or so,) I will let you know if it helped or not. They didnt want to do surgery right away because they said if I did, it would go in to full blown CRPS. As of right now, my condition is considered mild. My injury date was almost three months ago and I am dealing with the same amount of pain as I did the day of the injury. I am ready to get things going as soon as possible because I am ready to get on with things. I dont want to stay on crutches my entire life, nor do I want to deal with this condition, but I know no matter what, pain is something that will now be a part of my life. So I guess this will be my new "normal". Just dont be afraid to speak up for yourself! Find a doctor that is familiar with this condition then stick with them! I'm fortunate that my orthopedic knew of the condition. At first I was angry because she told me that she thought I had a pain problem. I thought, "Duh, ya think! I have two torn tendons, of course I have a pain problem!" She told me about the skin discoloration and the change in temperature from one foot to the other. I still didnt believe her. When I went to my first physical therapy evaluation, he told me that he thought I had CRPS. He actually explained it to me better than the orthopedic did. After that, my ortho sent me to a pain management doctor who totally explained the condition to me. I am doing the lidocain patches as well as the cream. She also put me on Naproxin and Neurotin. Neurotin is a medication that works with the nerves in the brain. It is a seizure medication but it also is a drug of choice for this condition. Speak with your physician and see what plan they would have for you and dont let workmans comp bully you!!! If you threaten to get a lawyer, you would be amazed at how quickly they move!!!! Hope this helps!

 
Old 07-22-2012, 07:09 PM   #28
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Re: crps 1 or 2 or both

Yes, WC will certainly try to bully you to see if you will just go away or worse yet, starve you out and make you come back to work still hurt and really unable to come back and then leave seemingly of your own accord.

After I fell on an unsalted icy sidewalk on my way into work, I had 2 weeks off but my knee still wasn't better. Their contracted CNA told me she was going to keep me on restrictions (which really kept me out of work) and get me an mri. A few days later I was called in to speak with HR at my job and given a paper with a few restrictions, come back to work, and NO MRI. They said this was over and our HR person said she did not want to hear about it anymore, go see my family doctor for symptoms of an unrelated neurological condition. Also she "threatened" me with an IME if I continued claiming this was worker's comp.

My immediate actions were to go see my family doc and GET A LAWYER!!!! They know our rights and can monitor everything for free. It did not help them that their IME doc agreed with my doctors that this is most likely CRPS and I need treatment sooner rather than later. They are still jerking me around though in one way or another constantly but I am finally getting the bone scan that my OS recommended over a month ago. I am only scared that if the bone scan doesn't show anything they will say I don't have anything wrong. Hopefully that doesn't happen.

Anyone with WC or other accidental injury issues needs to have an attorney. I didn't know it could be anything serious when I got one.

 
Old 07-23-2012, 07:44 AM   #29
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Re: crps 1 or 2 or both

The easy to remember rule: If your injury is at or as a result from your work, its Comp.

Comp = Attorney immediately, even if comp cooperates fully; its only a matter of time before they stop.

Don't let them bully you back to work, if you take a job with same pay & less work, it makes it easy for them to fire you and blame the economy. Then you're screwed because they close your comp case.

Repeat: Comp = Attorney immediately!!!!!!!!!!!
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I am not a Doctor - Please DO NOT construe anything above as medical advice. Everything I post is from my own personal research and/or experiences.

 
Old 07-23-2012, 09:18 AM   #30
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Re: crps 1 or 2 or both

Thanks to all for good info.
I have been receiving comp checks for over a yr now. This is not the problem.
Comp and Dr. are not saying that I should not be receiving treatment or checks. Problem is all 9 dr. say CRPS and I am still being treated. The problem is truly that they have taken as long as 6 mths to move forward once a Dr. and Comp says sure she needs a new Dr. Then you go to a new Dr. and they won't let you have that Dr. as a new TREATING DR. I keep having to go back to same Ortho I oringinally went to who is not the correct type of Dr. He says Comp keeps telling me you are going to get a new treating Dr. but they don't ever give me one. No one has ever said I was not hurt at work or that I don't have injuries, they just are taking forever and a yr to treat them. I have had an attrny for forever. He keeps telling me that I should settle and then I can go to my own Dr. and do what I want. I don't want to settle when I am in the middle of it and they are paying for everything. Attrny tells me Comp cases do not get better with time and I need to end it now, dont think I should as I am not interested in their small settlement, but in getting the treatments I need and not at my expense. Who will ever insure me if I am left to go to my own Dr.?? This could be a lifetime of expense and I want to settle with them still sending me forever to get treatments. Is this possible as I live in a state where lifetime benefits are available. I have never spent the first dime on this. Comp . has pd for everything. Still tying to get that new treating Dr. has taken yrs. even tho everyone agrees I should have a physiatrist and they sent me to a physiatrist they will not let him be my new treating Dr. as of yet. Attrny says he thinks he can make that happen but it has yet to happen. Had trigger pt. injections, but don't think it worked. Still going to therapy and they are wonderful. Now I am going back again to the orginial Dr. to say trigger pts. injections did not work...and you keep telling me that Comp tells you I am getting a new treating Dr.....well you need to tell them to make that happen now cause you are an Ortho and I need Physiatrist...so tell them to let me have the Physiatrist and you will be done with me.

 
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